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Breast Cancer Survivors and Those Who Care

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  FORUM:   Share Your Breast Cancer Story
TOPIC:   Cancer Treatment Discussion: Chemo, Radiation, etc 


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MONTHONY
MONTHONY's Photo Posts: 117
7/15/13 10:16 P

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Yes, I had those very sharp pains after lymph node removal and radiation, and it was intense. My cancer was in 1998, and gradually the pains were less frequent. I have remained cancer free for all these years.


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JESSIG5
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4/12/13 2:58 P

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I don't know if it is applicable but I had nerve damage from surgery on my parotid (facial surgery) last year. The surgeon explained that the nerves in my cheek area were cut during the surgery but that the severed ends would gradually grow back together and probably return to normal. It can take a year or longer to happen.

The funny side effect (which I didn't experience) is that the saliva glands and sweat glands are in the same area and both types of nerve endings were cut. It is possible for the wrong nerves to grow together (sweat to saliva and vice versa). In that event, I would sweat when I ate and my mouth would produce saliva when I was too hot. emoticon I haven't experienced that problem but my lawn man had the same operation and it happens to him.

One day at a time; one pound at a time.



AGAWRITER
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4/12/13 7:34 A

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I talked to my doctor (well, his resident), and she said it was probably nerve damage from surgery. Didn't know what to do about it.


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AGAWRITER
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4/10/13 8:55 P

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Thank you. It came up so suddenly that I wasn't sure. You made me feel better.


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JESSIG5
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4/10/13 8:05 P

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It has been over two years since I finished my radiation and I still have what seem like muscle spasms in that area. particularly when I lie a certain way and move a certain way. Sometimes they are sharp enough to take my breath away.It doesn't happen very often. The burns have healed but I do have some small areas that are still very dry and irritated. The radiation doctor told me that it is possible to have skin damqge or side effects of the radiation even years later; that is why we have to have regular checkups for the rest of our life.

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CONCHA77
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4/10/13 7:42 P

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Yes, even after my radiation treatments months later I had those pains :( I wish you all the best with your radiation and recovery. Hugs and Health. Connie


If you want your dreams to come true, you mustn't oversleep.




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AGAWRITER
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4/10/13 7:32 P

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Quick question: I am in my fifth week of radiation, and just last night started having a severe pain in the area being radiated. Not the skin, which is nice and burnt, but more o a muscle nerve pain whenever there is pressure on the area-- lying in bed, or just a hand touching the area. Anyone else have this?


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CONCHA77
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4/9/13 9:04 A

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I feel your pain, MATER88. The meds for me are the worst part too. Some have no symptoms with them and others have many. I am hoping after a few months side effects will ease and my body will adjust. Good Luck. I wish you well. Connie


If you want your dreams to come true, you mustn't oversleep.




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MATER88
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4/8/13 10:55 P

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I did so well during surgery and radiation that I wasn't particularly worried about the Arimidex. But I am now starting to feel uneasy about it. I have had hot flashes but I can mostly ignore them. But now I am having other symptoms that may be medicine related. My right jaw has been hurting (off and on in severity) since the beginning of March. My insomnia has gotten much worse. I am sleeping at least 12 hours a day once I finally get to sleep. I am also feeling fatigued and tired without doing much of anything. My DH thinks (hopes) it is a delayed reaction to my radiation. I went back and figured out that I spent 266 minutes less exercising in Feb. than in Jan. January was the last month of radiation. I would like for it to be the radiation because I can just wait it out. But having trouble with the meds has upset me more than anything about this whole cancer journey.

Edited by: MATER88 at: 4/12/2013 (22:40)

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JESSIG5
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3/27/13 9:21 A

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Since my cancer was triple negative, there are no follow-up meds for me to take so I can't speak about hair loss. I am glad to say that my hair has grown back even thicker than it was before the chemo.

Since my chemo treatments were interrupted I had the pleasure of losing my hair not once but twice. I was so critically ill though that I really didn't care; it was the least of my problems.

Wishing you the best.

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One day at a time; one pound at a time.



BECKYANNE1
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3/27/13 7:38 A

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I've heard about the hair loss. I had hair loss last year after all of my surgeries, but it got better and now I've got it again, but I can't say it's from the meds. I wasn't on any meds the first time. I guess time will tell. The last time it got better when the weather got nicer.


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KELL724
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3/27/13 6:03 A

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Does anyone have problems with hair loss on these drugs? i am on Tamoxifan, have some side effects but it's manageable but hair is getting thinner and doc said that is a side effect of either drug. Just went to my new doctor last night and so far so good, my last healthcare system dropped me because I owed them too much money so I switched after being doctorless for 3 months. I do have weight gain issues too with this drug but alot of it is me I am just so hungry all the time. emoticon


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BECKYANNE1
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3/26/13 12:58 A

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MATER-You have the 2 meds mixed up. Tamoxifan can cause uterine cancer and Arimidex affects your bone density. I was on the Tamoxifan and just recently switched to Arimidex because I had my ovaries removed which put me into menopause. I've always talked to my Dr. about the side effects and he has always said that the benefits out way the side effects. Remember, these side effects don't effect everyone and they will watch you. I was concerned with the achey joints you could get and my Dr assured me that he has only had 1 patient that has had issues and it is reversible. So I felt much better about that.


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CONCHA77
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3/25/13 8:13 A

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Well, after long consideration and a second opinion I decided to get back on the arimidex (2nd time around) I had another "scare" from my recent mammogram --but all is ok with that....But that did scare me into taking the meds once again. I don't like taking them at all with the weight gain, hot flashes, etc. but I feel it's the best for me in the end. It's really a tough decision, I can relate with you on that. I am just going to have to eat better, work out more to help with the weight gain, and try and tolerate all the other side effects as they come.
As far as the osteoporosis I will be needing a bone density and thanks for that reminder...
I had a hysterectomy so am not concerned about cervical or uterine cancer. I wish you luck and Blessings, MATER88, and yes, think positive. Hugs and health. Connie
We can do this!


If you want your dreams to come true, you mustn't oversleep.




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MATER88
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3/25/13 2:31 A

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I remember that my medical oncologist said that tamoxifin could cause problems with bone density. I have osteoporosis in my family so I don't need bone density problems as I already have osteopenia. She wanted me to be on Arimidex but I thought she said that in addition to hot flashes you are more prone to getting some other cancer like cervical or uterine. Did I understand her? Have any of you had any problems like that on Arimidex? I talked to a friend who had a bone scan at first and then it got a little worse. She took some shots that she had to give herself in the stomach or thigh. She said that was a new treatment for osteoporosis. You can only take them for two years but at the end of that time she had better bone density than before. Have any of you been on shots like those? She also said that the hot flashes get better. I was complaining that in addition to making me feel awful it also reminded me that I had had cancer. She said that she chose to think of it as having the hot flashes made her know the meds were working. I think I will use that in my thinking. I want to remain as positive as possible. Thanks for listening.


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LADYMARCIA1
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2/27/13 5:18 P

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I was on Arimidex for 5 years. After a long discussion with my oncoligist, I went off of it about 5 months ago. I have weight gain (about 40 lbs) and now I've started loosing. I don't know if it was the cause of my memory loss or just being older than I was 10 years ago. I now only take my vitamins and feel better than I have in 5 years. So I'm glad I stopped taking it and hope that it was the smart thing to do. Time will tell.
emoticon emoticon emoticon emoticon emoticon

I think I can. I know I can. I will.

Don't let yesterday use up to much of today!

"There are two ways to live:
You can live as if nothing is a miracle OR as if EVERYTHING is a miracle." Albert Einstein
I choose the latter!


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CJYOUCANDOIT
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2/27/13 8:59 A

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I have not been on arimidex but I have been on tamoxifen which also causes increased hot flashes. My oncologist prescribed effexor --an anti depressant-- to help with hot flashes. It did not make them go away but did help bring them to a tolerable level. Basically it is choose your poison. I am almost to my 5 year mark and will quit the meds. I am hoping to be able to drop weight a little better. I think it is important to follow what the oncologist tells you but it it also important to be informed about the options and side effects. Good luck.

"The secret of change is to focus all of your energy, not on fighting the old, but on building the new." -Socrates


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MATER88
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2/25/13 12:17 A

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I had a lumpectomy on both sides and radiation. My medical oncologist wanted me to take Arimidex. I've been on it for about a month. Can Arimidex cause memory problems? I'm 66 so maybe it's my age. But I know it can give some women hot flashes. And I'm one of them. They are not so bad since it is winter but I'm not so sure about when it gets hot. I see my medical oncologist this Thursday and I am going to talk to her about it. Is there anything that any of you know about what they can prescribe and are the side effects of the anti-hot flashes enough to not even bother?


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BELAMEE
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2/24/13 11:58 A

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I have heard of people taking a break. Its great that can be done. Great on the Cardio! I have an elliptical and going to start that. I know I can't do 30 minutes. But if i can do 5 minutes that would be great. I have been doing walking and stretching. The stretching alone feels so good! Onward and forward! Have great day!

Keep the faith.


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CONCHA77
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2/23/13 7:25 P

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I finally decided to get off the meds, for now. I am at a lower risk. I just need a break from all of it. I see my Dr Monday. Who knows, I may go back to taking Arimidex later. I just don't feel it is necessary for me right now.
Hope everyone is feeling great! I am FINALLY getting back to my cardio!! It has been a long long time. Hugs to all.


If you want your dreams to come true, you mustn't oversleep.




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BELAMEE
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2/23/13 5:27 P

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I am taking Arimadex, this is my 4th month taking it. I am at high risk. I chose bi lateral mastectomy and had a full hysterectomy. No need for chemo or radiation because of surgery and it was all removed. 10 years ago I had lumpectomy for phyllodes tumor. I have several of the side effects of the medicine. aches,pains,memory,hot flashes, hair loss,insomnia,nauseous. But that could be from the surgical Menopause also. I can live with this. It took me several months to decide whether to take this drug or not. I am glad to be taking it and have it available to me. Only you can decide if it is for you or not.

Bilateral mastectomy May 22,2012
Hysterectomy Oct. 4,2012


Keep the faith.


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BECKYANNE1
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2/9/13 6:54 A

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Right now I'm taking Tamoxifen. I've got a bottle of Arimidex to start taking instead, but I've held off because of the surgery I had. I didn't want to confuse any side affects with surgery issues. I haven't had any problems with Tamoxifen and I'm keeping my fingers crossed I don't with the Arimidex. If I do I can always switch back. When I started taking Tamoxifen, the side affects scared the heck out of me and I questioned if I wanted to be on them or not. My Dr. encouraged me to stay on them and so far so good. It's pretty much a personal decision. Good Luck!


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CONCHA77
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2/6/13 8:44 P

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Thanks for your input, Carol. Appreciate it. I really to make a decision soon.




If you want your dreams to come true, you mustn't oversleep.




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CARPROTH
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2/6/13 6:14 P

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AllI can tell you, Cynthia, is that I wish I had gone off the hormone inhibitors earlier. It's been 10 months now, and almost all the drug side effects are gone. I say almost, because while I was taking them, I developed bone spurs on portions of my spine, and these in turn have led to a pinching of the sciatic nerve and the feeling that an ice pick has been jabbed in my right butt cheek and the tingling runs down the outside of my leg and has my foot spasming. I'm seeing a pain specialist and we're trying method after method for alleviating it - so far only very temporary relief. It's not so bad when I'm sitting, but anything weight bearing (impact or no impact makes no sdifference) triggers it. As you know, women in our position are told weight bearing exercise is mandatory for maintaining bone density, and I have no idea when I can get back into a workout regimen that includes much-loved walking and hiking.

I hope you, in conjuction with your doctor, make a decision soon about continued drug treatment. I know every case is unique, and that you are very pro-active concerning your continued care. Whatever verdict you reach will be the correct one for you.
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Carol

Carol


Shoot for the moon. Even if you miss you will land amongst the stars.


Nothing changes when nothing changes.



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CONCHA77
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2/6/13 2:33 P

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I am now taking Aromasin -another from of Arimidex --and am also considering getting off of it once and for all. I have joint pain and I am tired all the time along with dark circles. I have a appt. with another specialist to see what the odds are with me off the pill once again. (I did have radiation and lumpectomy in 2011/21012)

Edited by: CONCHA77 at: 2/6/2013 (14:34)

If you want your dreams to come true, you mustn't oversleep.




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JESSIG5
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2/6/13 2:31 P

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I'm sorry I can't answer your question, Cynthia. I just wanted to wish you the best, whatever choice you make. These are very difficult decisions to make.
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CYNTHIAHOARD
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2/6/13 1:52 P

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I have read the most recent (?) posts. I have had a 40# weight gain after losing 23 #. I just saw my oncologist on Monday and he said the weight gain and severe fatigue are due at least in part to the Arimidex. A Nurse Practitioner told me on Tuesday that she knew three women who had lumpectomies who did not have chemo, radiation or aromotase inhibiter. We talked about investigating the odds around not taking the Arimidex and recurrence because right now I am pretty nonfunctional.. I like the experience that Carol had coming off of the drug. Anybody else read any articles or studies on the longterm picture of the AHs and cancer recurrence? Anybody else out there decided to stop or did not take the AH?


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CONCHA77
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7/17/12 8:51 P

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I discontinued Arimidex two weeks ago so it is too early for noticing any changes, physically . I decided after all the side effects (different for all) it was better if I went without the med. and have my Dr keep a close eye on me. I am considered lower risk and dr agreed with my decision. Hoping I made the right choice. I say "to each their own." Hope everyone is feeling well, I do need to catch up on my emails, been busy. Hugs and Health.


If you want your dreams to come true, you mustn't oversleep.




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BRAVEONE92
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7/16/12 11:07 P

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Like-wise Carol, I will not be sorry for choosing a healthier body, and
feeling better in the present.

Glad to hear that you are doing much better over-all. emoticonemoticon

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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CARPROTH
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5/18/12 11:15 A

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I've been off all endocrine therapy drugs for 2 months now and have noted several changes: my blood pressure (which before cancer had been 118/78 and with aromatase inhibitors had shot up to 154/86) is now heading back down; hair loss (as monitored in the shower when washing it) has stopped; the psoriasis glacier that was creeping across my scalp (and costing me $100/month in med co-pays) is retreating even though I ran out of the expensive meds and did not re-order; at the gym I am once again raising weights during strength training after 2 years of lowering them; I have not had bone pain in almost a month (not counting my arthritic joints where I've always had it); and my skin seems not so sensitive (I had been bruising at almost every touch). I've also seen the scale start to go down again (over the 2 years of cancer meds, weight went back up 15 unwantede pounds).

I'm still experiencing muscle aches, having difficulty sleeping, and am definitely not where I want to be. But for me, at least, the trends are pointing in the right direction and I believe I made the right decision for improved health now rather than a possibility (never more than that) that my cancer would be deterred from rearing its ugly head again some time in the future. I know women who took all the meds and the cancer came back. I know others who took them and it didn't - kind of comes down to a crap shoot similar to getting it in the first place. Whatever happens, I will not be sorry for choosing a healthier body and improved quality of life in the present. I hope you're as happy with whatever decision you reach.
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Carol

Carol


Shoot for the moon. Even if you miss you will land amongst the stars.


Nothing changes when nothing changes.



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JESSIG5
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5/18/12 9:55 A

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I am lucky enough or unlucky enough, depending on how you look at it, that there are no cancer drugs for me to take following chemo as my cancer is triple negative. And since I was diagnosed at Stage IV, the doctors thought it had already spread to my other organs and there was really no hope. Since they have not found it after this two years in the other organs, they did admit that POSSIBLY it was only Stage III, meaning that it may not have spread. Because I was critically ill and weak when they did the mastectomy, the surgeon did not take the lymph nodes even though normally he would have. That being said, I have had all of the side effects which you all mention such as the sore joints, hair loss, no energy, etc. I don't know but it seems that these could be side effects of the cancer, not of the drugs. If so, for you ladies who have discontinued your drugs -- do you see an improvement?

One day at a time; one pound at a time.



CONCHA77
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5/18/12 8:45 A

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CARPROTH, and BRAVEONE,
I have been seriously thinking about giving up my arimidex, I do have a DR appt in July to discuss with dr about it. I also get side effects, sore joints, hair loss, etc. and feeling very slow compared to before. I was stage 1 and had no problems with lymph nodes. Did you notice any changes when you quit, such as more energy, feeling better, etc? Back to yourselves? Just curious? Appreciate any input. Connie


If you want your dreams to come true, you mustn't oversleep.




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BRAVEONE92
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5/17/12 11:30 P

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CARPROTH, I have to agree with all that you stated, because I too,
could not tolerate any of the pills. I too, had a low rate recurrence of
getting cancer back. I am taking my chances as well.


"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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JESSIG5
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5/17/12 3:33 P

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An article on Yahoo today:
http://health.yahoo.net/news/s/nm/study-unpicks-gene-changes-behind-breast-cancer

One day at a time; one pound at a time.



BECKYANNE1
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4/17/12 9:18 P

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Tamoxifin can be taken pre menopausal and post menopausal the way I understand, but the Arimadax is taken post menopausal. Plus there are different side effects with both.


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JESSIG5
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4/17/12 3:47 P

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Carproth, I love your use of Gladiatior. I will remember that.

One day at a time; one pound at a time.



CARPROTH
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4/17/12 11:58 A

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I've been on all 4 endocrine therapy meds (Arimadex, Aromasin, Femara, Tamoxifen) - the first three are aromatase inhibitors which remove estrogen from the body. Even post-menopausal women continue to make minute amounts, and estrogen is also stored in fatty tissue (hence the admonition to lose weight). They are prescribed only for women who have no desire/interest in having children in the future. Tamoxifen is the grandmother of endocrine therapy drugs and affects how the body utilizes the estrogen it has - not removing, but regulating.

I've been on all four. With each one I experienced side effects: severe bone/muscle pain, insomnia, extreme vaginal dryness, bruising and bleeding easily, a marked increase in blood pressure, water retention in extremeties, formation of bone spurs, rapid acceleration in progress of osteoarthritis, psoriasis covering my entire scalp. It got to the point where I was taking four additional prescription medications just to help counteract the effects of the one original endocrine therapy med. After 18 months of trying to find one I could tolerate, by doctors agreed that I would probably be better off stopping them entirely. My Oncotype DX score was very low, I sailed through surgery and radiation, and I have (or at least had) an otherwise healthy body.

The reason for taking the long-term oral chemo is to lessen the chance of the cancer returning. It's no guarantee that it won't be back - just one more factor like healthy weight, limited alcohol, diet, activity levels, etc. I decided that I would rather stop the drugs that were making me unhealthy right now and take my chances that if the cancer should return, I would be able to face it with a strong body and fight it again.

I recently heard a woman speak at a fund-raiser for breast cancer, and one of her lines stuck with me: "If you look up the word 'survivor' in the dictionary, it will say 'someone or something that continues to function'. That pretty well describes my 15 year old refrigerator, that's not me." I agree and have come up with my own word to describe my journey - Gladiator: A warrior armed with knowledge, trained by experience, and engaged in a fight to the death. I'm determined to kill the cancer, not the other way around.

Carol


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CONCHA77
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4/17/12 7:54 A

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Does anyone know the "difference" between the Arimidex and Tamoxifin? (I guess I could look that up....) Are they both for prescribed for different kinds of BC? May be a dumb question, just never thought about it and I know some of us here take one or the other med.
Have a great Tuesday?


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BECKYANNE1
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So far so good with the Tamoxifin. I really haven't noticed any side effects yet. Keeping my fingers crossed that I don't.


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60SIXTY
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I just saw my medical oncologist last week.
She didn't think the tamoxifen had anything to do with my increased joint pain.
I did not have chemo - just radiation.

Linda - North East Indiana, USA `Goal to build myself up to reach 1,000 fitness minutes per month.

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BEGOODE
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I've been taking Tamoxifen for 4 months now and so far haven't noticed any side affects. But I came down with the Shingles just a month after comlpleting radiation and still dealing with the side affects of radiation. Now that I'm over the shingles I feel so much better. I'm back to walking 5 times a week so maybe that is helping.

Far away in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them, and try to follow where they lead.

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This is my 3rd month taking arimidex and i THINK that it is attributing to more joint pain. It is bearable though and I am trying to do some stretching, some beginning yoga, and looking into meditation. Like I mentioned a few months back, I already did have some joint pain so really not sure why this is. I spoke with the Dr about it and she did suggest yoga. I am hoping that it doesn't get worse, regardless of what is causing it. Surely makes me feel a lot older than I am. I am in my mid 50s. Any other suggestions? All in all though I am feeling pretty good. Connie
Have a great week, everyone.

Edited by: CONCHA77 at: 4/16/2012 (07:46)

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JESSIG5
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About the joint pain: I just wanted to add a word. My daughter was on the tamoxifen for the five years and now is in a clinical study for a new drug which would be taken for five years following the tamoxifen. (She may or may not be taking the drug as it is a blind study.) My own cancer was triple negative and there are no follow-up drugs available to take. We have equally suffered from joint pain following chemo and radiation. She will be a 10 year survivor this summer and I am over two years so it is difficult to isolate exactly what causes the pain. Her doctors say it is the result of treatment; my doctors call it carpel tunnel and arthritis. All I know is I did not have the pains before treatment and I did afterwards and they started during the chemo.. I don't care what the doctors say about it, MY JOINTS HURT. It doesn't matter what they name it.

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60SIXTY
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I posted more about how I am dealing with this on the chat thread.
Had a better night.

Linda - North East Indiana, USA `Goal to build myself up to reach 1,000 fitness minutes per month.

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PINK-SOLDIER
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Hope you are adjusting to the medicine. it's always best to discuss any concerns or side effects with your dr. Hoping all questions will be answered.

Inga
Co-Leader of Breast Cancer Survivor's & Those Who Care. Days Go By...So Live Your Life.

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60SIXTY
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Just stopping to say hello & keep this thread at the top of my list of recent posts.

Concha - it may take a while before you know if the med has side effects.

Linda - North East Indiana, USA `Goal to build myself up to reach 1,000 fitness minutes per month.

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CONCHA77
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I begin taking my meds on Monday and hoping that I am able to take these meds and not have too many side effects. I already have issues with bladder and also have some joint pain and I am only in my mid 50s. I guess we must do what we have to do.....
Hope everyone is doing well. I think of this team often. Hugs. Connie


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CARPROTH
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Don't be so sure it's the weather, Lina - I've never taken Tamoxifen, but both aromatase inhibitors I've used really intensified my arthritis pain. My oncologist took me off the last one for 2 weeks (one week ago) to verify that it was the drug, not something else, causing the joint pain. I see him a week from Monday and we'll decide then what course to take.
Carol

Carol


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60SIXTY
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This may sound crazy.
I am wondering if the tamoxifen is making my joint pain worse.
Probably not. The weather changes are more likely to blame.

My skin is getting super dry and my bladder control is becoming more challenging. I know that the tamoxifen is causing those issues. I figure I have to put up with it.

I am still having issues with the way food tastes. This started about the second week of my radiation. I find cooked veggies revolting. I enjoy bell peppers. I am forcing myself to eat a salad made with spinach. Yesterday - I figured out that if I added a tangerine to the spinach and sunflower seeds - I liked it. I am eating more fruit than I ever have in my life. I am also having to force myself to eat protein.

Linda - North East Indiana, USA `Goal to build myself up to reach 1,000 fitness minutes per month.

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CONCHA77
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Hello everyone, Just checking in, only 3 to 4 days left on this vacation and then homeward bound. I am hoping that everyone here is feeling well and healing.
For me, I think being away from home is just what the Dr ordered and also it's been great mentally, seeing my kids and grand kids here in Guam. When I return i begin taking the Tamoxifen. I am thinking positive about it and hoping I don't have too many side effects. I am feeling almost back to my ole self as far as energy and I am healing very well.
Anyhow, will check in later. Hugs and Health to you all.


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GENESIS2012
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60 & Brave - We all have a little different story but it seems we all have a lot of the same questions and or issues. I ate broccoli all the time and a lot of other foods that were supposed to prevent BC. I exercised and tried to watch my diet. It still happened. Since then I have really been shocked to find how many woman have had BC. I go to the pool and I'll be talking to one of the women and BC comes up and I find that 3-4 out of a group of 6 women just standing in the water and chatting have had BC at one time. I have a daughter in her 30's and I told her how important it is to get a mammogram every single year. I tell every woman I know how important this is. It isn't our fault we got BC - we didn't do anything wrong - it just happens and we just deal with it and go forward. I always pray that the Lord will use my BC to help some other woman. I truly believe that while this disease stinks, it's not the end of the world and I know there is purpose to my being a BC survivor.

60 - I really relate to you with the bursa, back and joint pain. My Chiropractor tells me the same thing you are being told - pool; ice; heat; massage, etc. and he also told me not to stay in the same position - whether sitting, standing, lying down - for more than 30 min. - or to move into another position if I start feeling pain. It is hardest at night for me - when I first get into bed it takes me 2-3 hours to just "settle in" and feel semi-comfortable. I, like you, don't know how much is from the Arimidex/Amorasin and how much is from the bursa problems and the fall I took in Aug.

Begoode - you have only noticed hot flashes so far and I sure hope it stays that way for you. Let me know how it goes for you as time goes on. I didn't have any really noticeable side effects from the Arimidex for several months and then the joint pain started. As I said, I just switched to the Aromasin because I had read about several women who had less side effects when they switched from Arimidex to Aromasin. It's only been a week but so far I have noticed any difference at all.

60 - What is the Pain Management Doctor doing? Massage? I am so desperate to find something to help with this pain. I don't know what the worst of it is - the bursa pain; the sciatic nerve pain; or the joint pain from the cancer drugs! I feel like I went from 60 to 90 in less than a year. I'll try anything at this point and I would be totally happy if it would just get marginally better - just enough to be able to do some of the day to day things without the pain. So you do water aerobics or just move around in the pool - use a hot tub???

Carol emoticonemoticon

The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving, let your requests be made known to God. Philippians 4:6 TLSB

Carol
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BEGOODE
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1/14/12 9:17 A

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I started on Tamoxifen the week after Christmas. So far the only side effect I've had is hot flashes. I still get tired easier at times but wonder if that isn't still from the radiation.

Far away in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them, and try to follow where they lead.

- Louisa May Alcott, author


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60SIXTY
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BRAVEONE92 & GENESIS2012
thank you for sharing.

I am sure all women search for answers that are not there as to how did I get this.
Part of the reason I worry - is because I have daughters and a granddaughter.

Gen
I have bursitis of both hips, but the right is ten times worse. Mine is semi-chronic as well.
My chiropractor sent me to my pain manager for treatment.
I am also encouraged to walk in a pool instead of my neighborhood.
also, alternate heat and ice, then massage. I haven't tried the massage yet. I am told to do it gently and that it may desensitize the area of the pain.

My medication is Tamoxifen - I started it a few days after Christmas.
Before that, I was on Levofloxin, an antibiotic that can cause tendon problems.
My bursitis and tendonitis got a lot worse. My left shoulder was particularly bad.
In just the past week I have noticed my shoulder is much better.

Anyway - between the antibiotic and my pre-existing bursitis and back problems - it is hard for me to know if my Tamoxifen is causing any problems.
My biggest problem that I know is from the Tamoxifen is skin dryness.

Linda - North East Indiana, USA `Goal to build myself up to reach 1,000 fitness minutes per month.

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GENESIS2012
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1/12/12 6:25 P

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You know sisters, I honestly think everything is just a "theory" as to why we got breast cancer - and I'm not all that sure it matters to me "why" as much as it matters that they are finding better ways to treat and cure this miserable disease every day. Right now, if it wasn't for the stiff joints I have from my medication, I'd feel great. I just switched from Ariminidex to Aromasin a few days ago. I haven't noticed any improvement with the joint pain/stiffness but maybe it's too early to tell if there will be any improvement. What complicates this joint pain issue for me is that I fell flat on my back with my left wrist under me in mid-Aug. and I broke my wrist and jarred my entire body - I could feel my teeth rattle I hit the ground so hard! Well, I'm not sure how much of my joint pain comes from the fall/break and how much comes from the medication. On top of that I have a bad bursa sack in my right hip joint. This is a kind of chronic thing in that I've had it since I was in my 30's but it would come and go. Since my fall, it has been almost constant. I am going to a really good Chiropractor and if I listen to him and do my homework - icing the area several times a day and walking in the pool instead of on hard surfaces, as well as not staying in any one position too long - I might see a good deal of improvement in time. Has anyone else changed meds and, if so, how long was it before you noticed any change one way or the other? Also, does anyone have anything they do for the joint pain that is particularly helpful? All suggestions appreciated! emoticon

The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving, let your requests be made known to God. Philippians 4:6 TLSB

Carol
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BRAVEONE92
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I have read the stories on this page, and it interested me. So I
thought I would like to tell you what happened in my BC case.

First of all, I had a radical hysterectomy when I was 47. The
reason was, that I had very painful cysts covering both ovaries.
The pain was equal to childbirth pain, @ times. When the
surgeon was finished, she advised that my womb seemed
to be inflamed as well.

Later, I was given a prescription of estrogens to take for the
rest of my life. I would go to the rubberized track and walk
every day after work. I tried to keep on walking as soon as
I was able. I even went back to work in 4 weeks, instead of
the normal 6 wks. I had already started the estrogen. I
eventually started noticing that I felt when walking, that I
was staggering like a drunk. At my next visit, I told my
doctor. I also was told by her that my BP was now high.
I was so healthy back then, I had no problems, and had
no primary doctor, except the gynecologist. I visited once
a year. Prior to surgery, I had no BP problem at all. I
refused BP meds. But she insisted that I come back
a few days during the week to be tested. Finally, she
put me on a BP pill on a Fri. Apparently it was too much
for me, and during early AM Sat., I went to the potty,
and as I started to go back to bed, I passed out and
injured myself. I have no idea how long I layed there.
When I woke up, I tried to yell for my DD, but couldn't
speak a word. I crawled to her room and touched her,
she saw blood and somehow she got me to the car.
She was only 15, no permit to drive. But she got me
to the hospital. They kept me for a week with a heart
monitor. Told me that my BP had bottomed out! I was
so angry. I thought that more thought should have gone
into the dosage that I should have taken. I refused to
take another estrogen pill, because of my BP.

Then Nov. 2010, I had my normal annual mammogram.
On the 14th, I was told I had BC! The reason was from
hormones in my body. I could not believe it. To make
a long story short, they told me that I could get hormones
from my adrenal gland. Age 70.

As far as my mom knows, there has not been any breast
cancer in either sides of my family history. She is 92. I
am the only victim.

I have wondered many times, if the foods I ate, had anything
to do with it. I have rarely eaten soy products, nor milk, nor
very much meats. I keep thinking, then what caused me to
have so much hormones, to bind to something else, and
cause BC. I have read countless research on line and books,
but I am taking the view of my surgeon, who did a bilateral
on me. He stated, "We truly don't know why you got cancer."
He went on to say, there's lots of research and such, but we
don't have a true answer as to the cause.



Edited by: BRAVEONE92 at: 1/12/2012 (17:54)
"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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60SIXTY
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Gen
I don't think the docs give enough info sometimes.
Our hormone levels definitely drop at menopause, but they don't stop. A total hysterectomy with removal of the ovaries would remove most hormone production, but even then, I don't think it is 100%.

My gynecologist told me that the "mean" age for menopause was about 52.5. By the time I reached 55, he considered it late to still be menstruating and ran tests to make sure it wasn't something else. As it turned out, I was still ovulating. I only know a two women who didn't hit menopause by 55. Most of my friends were before 50, so they are shocked by my story.

The research does show that the more years that a woman actively menstruates, the greater her risk for breast cancer. The calculate from start to finish, and subtract out the number of months of pregnancy & also breast feeding if that changed the pattern.

You may have heard of the famous Nurses Health Research Study. A lot of this research came out of that. I was in it for a while. Regrettably, I dropped out, because I began to question who the researchers were and thought they asked to many personal questions. This was the first major research that focused on women. As I understand it, even the initial research on the safety of estrogen supplements was done on men. They must have been crazy. Research was not done on women historically because it was considered that the unpredictable influence of fluctuating hormone levels would ruin the testing.

Scientific method has come a long way. I don't think it is always done correctly. But, I believe that the best research is God inspired.

Linda - North East Indiana, USA `Goal to build myself up to reach 1,000 fitness minutes per month.

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GENESIS2012
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I'm no expert, but my oncologist told me that estrogen fed tumors are extremely common among women after menopause. He also told me that these tumors are very treatable with a very high "cure" rate when caught early through routine mammograms. The surgeon also told me the same thing. My mom had a lumpectomy in her late 60's - back in 1986. Back then the doctors didn't tell you much - just what you had and what they were going to do. I am positive her tumor was also hormone related. As my oncologist told me, most women think that once they go through menopause they no longer produce estrogen. Well, maybe I'm nuts but it seems to me that's how they were pushing hormone therapy for years - "You aren't producing estrogen and it's bad for your heart." Remember that?? Well, I guess we really were producing it and no one bothered to mention what pumping more estrogen into our bodies would do to our breast health! As far as inheriting the breast cancer gene - my mom was the oldest of 6 sisters and none of them had breast cancer, nor did her mother. She told me her grandmother died from it but who knows - my mom was born in 1916 and her grandmother died when she was very young. They knew just about nothing when it came to diagnosing cancer back then and even less about treating it. I have one aunt and two cousins on my dad's side who are breast cancer survivors. Actually my aunt passed away last year at the age of 91 and it had nothing to do with her double mastectomy in her 60's. I don't know too many women who can't find breast cancer somewhere in their families if they look long enough. I guess I just figure that we get whatever we get, and we just need to keep the faith and don't give up - ever. I didn't think going through menopause in your mid to late 50's was a "late menopause." I was 54 - I'm 63 now. I believe my mother was 59 or 60, In fact, most of my friends were in their mid to late 50's when they went through it. The main thing we all have to remember is that we are NOT responsible for our breast cancer. It happens to women who are reed think and to women who are overweight. It happens to women who have breast fed their children and to women who didn't breast feed. It happens to women who eat totally healthy diets (remember Paul McCartney's wife, Linda Eastman - a slim vegan who was gung-ho on health issues.) Cancer does not discriminate. I am so grateful that God has given us the increased knowledge we have today and ability to fight this disease. Cancer is not a death sentence today - the first time I participated in a Relay for Life, I knew that. emoticon

The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving, let your requests be made known to God. Philippians 4:6 TLSB

Carol
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60SIXTY
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I think I joined this team in October, but I am just finding this thread after checking the team newsletter this morning.

emoticon to those of you who are new.

My story -
I am 63. My mother was diagnosed with Stage 1 ductal carcinoma at age 65 or 66.
The Friday after Labor Day, I had my annual gyn exam. My insurance doesn't cover wellness, so I had to pay for it. The following Tuesday, I was called to come back for a mammogram with magnification. They told me insurance should pay for this - although I still had deductibles to meet, at least the cost was negotiated. The radiologist and a BC navigator met with me and my husband about 20 minutes later and showed us the mammogram and explained why I needed a biopsy. They advised me on the best place to go for that, which was about a half hour further away. The biopsy was the following Monday. On Wednesday, I called them for results. I was told I had DCIS & was explained very skillfully about how treatable this was. I saw a surgeon that my gynecologist recommended on the following day. My surgery was a lumpectomy on the last Wednesday of September.

By now, I have completed 33 radiation treatments and am now on Tamoxifen.

My risk factors:
They don't know if breast cancer has a genetic link among women the age of my mother and myself, but we certainly have a lot of it in my family. This includes a cousin who is the same age as I a.m. What I do believe to be inherited is having a late menopause - I was almost 58 & my mother was also mid-50s. This is a know risk factor.
Additional risk factor - frequent chest x-rays between the ages of 5 amd 15. [because of a spine deformity.]

Overweight. I thought I was overweight in my 30s because I was so underweight in my 20s. I have learned from spark, that my weight may have been normal. By age 50, I was moderately overweight. At age 58, I suddenly & quickly gained about 25 pounds. I got all of that off with spark, but regained most of it in 2011 because of increased orthopedic problems that led me to having to change my cardio. I know I handled that whole situation poorly - but hope to do better in 2012.
I am told that Tamoxifen makes weight issues more challenging.


Linda - North East Indiana, USA `Goal to build myself up to reach 1,000 fitness minutes per month.

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GENESIS2012
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1/7/12 10:03 P

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Thanks for the encouraging words, Carol. It's good to hear something positive and I'm so glad for you that the Aromasin is working out. I am hopeful and have come to the conclusion that it probably couldn't be worse because the joint pain is debilitating for me on the Arimidex. I have felt like I'm a 95 year old woman for months and haven't slept well for longer than I can remember. I didn't have any increase in blood pressure but I did gain about 7 lbs. - which is a lot on my 5 foot frame. I hope to shed that 7 plus another 15-20 using Spark. For me "tracking" what I eat is mandatory. If I don't track, I have no conception of what I am putting in my mouth. Can you tell me how long it was before you noticed a change when you started the Aromasin? Thanks for your input - I really appreciate it!

Carolemoticon

The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving, let your requests be made known to God. Philippians 4:6 TLSB

Carol
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CARPROTH
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1/7/12 3:28 P

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Hi there, Carol!

The Aromasin has been much better for my body than the Arimadex - no more muscles that feel like lead or pains in my bones that feel like they're coming from the marrow. I still have slightly elevated blood pressure (mine was always on the low side before) and the 10 pounds I gained with one aromatase inhibitor still hasn't come off with the other, but I definitely feel stronger than I did before and am sleeping better. I hope it works for you, but if not, there are others to try also.

Carol

Carol


Shoot for the moon. Even if you miss you will land amongst the stars.


Nothing changes when nothing changes.



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GENESIS2012
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1/7/12 1:26 P

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Hi, Carol

I'm new to this team and was just reading this thread and saw your reply to Connie. I just started taking Aromasin last night after being on Arimidex since last May. I asked my doctor to change me over after reading some posts on the American Cancer Society website. It seemed a lot of women who had joint problems with Arimidex did much better on Aromasin. Every person tolerates meds differently but I think when there are several drugs available we should find one that we can tolerate and not just throw in the towel and accept the nasty side effects. I started having horrible joint pain after about 4 mos. on Arimidex and told my oncologist. He told me to take Tylenol. Well, sorry, but that is not a solution. It would give me a little relief but I was ready to throw in the towel - which I didn't want to do because I read that these drugs make the risk of recurrence of these estrogen fed tumors over 40% less likely. So, I started doing some research. I have been in contact with several other women I went through my radiation with - we became buddies in the waiting area - one of them was on Femora (hope I spelled it right) and she had terrible side effects so her doctor switched her. I haven't heard anything from her in a while but I'm assuming she must be doing better on the new drug since she hasn't said any more about it. I hope the Aromasin will work for me. I'm also starting weight bearing exercise on Jan. 18th (going to get insturctions on using the free weights and weight machines the proper way that day) and I'm taking calcium with D and trying to get milk in my diet every day. Hope you and Connie are doing well on your meds! Did the Aromasin make a difference for you?

Carolemoticon

The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving, let your requests be made known to God. Philippians 4:6 TLSB

Carol
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FUJIIMAMA
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12/18/11 9:50 P

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Pink-Soldier the nurse at my onc office had me take L-glutamine. I still take it if my hands start to get tingly. Usually a few days at 1-5 g seems to to the trick. Hope this helps. P.S. for anyone still goin through chemo they had me on 30g the first 3 days after a chemo treatment. Considering I was on taxotere and carbo and have almost no nueropathy, I think it help. So talk with your Dr.


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DRUIDPRINCESS
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11/19/11 5:39 P

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Thank you for posting this discussion. I have never spoken to anyone else during my treatment, so I was respectfully thankful to hear from other people who have been through similar things to me.

In brief, breast cancer in one side, double mastectomy, chemo, radiation, tamoxifen for two years then arimidex for five. My cancer was diagnosed in 2004 when I was 41.

My only problems were during my reconstruction surgery. This has taken three years while doctors have constantly stuffed it up. They had to undo one of the reconstructions at one stage, encouraging me to pen the (very short) poem :

My mother always told me bad things come about in threes.
To my surprise, the same applies to my mastectomies!

I went back to the gym to do weights before I learnt I was not meant to lift heavy weights (because of the chance of lymphoedema) and now lift more than my instructor! Research has since shown that weight bearing exercise helps keep up bone density (that Arimidex depletes), and so, at the ripe old age of 50, have the bone density of a 22 year old!

I have had no problems with Arimidex, so my stay on it has been extended. I have a follow-up appointment next month so things might change then.

With thanks to your blogs, I am going to ask about my hair, which I noticed recently has thinned and receded about 1/3 inch in the past twelve months, and my teeth seem to be losing their strength.

All the best to everyone here,

from lyn in Australia



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CYNTHIAHOARD
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11/15/11 7:10 A

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So far so good. I have not gained or lost any weight which I am happy about, the not gaining. My exercise is still not back to pre chemo levels, but I am getting there. You will no doubt make the best decision for yourself which is most important. The hard thing about all of this, is that ultimately we have to make the decisions about our care. Take Care Cindy


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CONCHA77
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11/7/11 6:38 A

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Thanks for your thoughts and comments. Really appreciate it, the subject was really bugging me this weekend for some reason. Onward. I will discuss it with my doctor(s) and I don't start mine until the end of December so I have plenty of time to ponder.
Cindy, please let me know how you do, I will be thinking of you. Hugs and Prayers.



If you want your dreams to come true, you mustn't oversleep.




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CYNTHIAHOARD
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11/6/11 7:46 P

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Connie
I started Arimidex a week or so ago. I too had read lots of nightmares and was very worried. Then it occurred to me that the people posting are the ones who have problems. It is highly unlikely that someone will be sure to write about their positive experiences. I too was leary but have gone ahead with it and so far am doing fine. Just a thought. Cindy


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CARPROTH
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11/6/11 4:29 P

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Hi Connie!

I gather that if you're going to be taking Arimadex, your tumor was hormone +. Even if you're post-menopausal, your body still stores estrogen, especially in fatty tissue. Aromatase inhibitors are designed to minimize that, thereby lowering your chance of a recurrance. There are at least 3 or 4 meds out there besides Arimadex (I'm taking Aromasin after 6 months of bad side effects with Arimadex), so just work with your oncologist and find one that you tolerate best.
emoticon
Carol

Carol


Shoot for the moon. Even if you miss you will land amongst the stars.


Nothing changes when nothing changes.



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CONCHA77
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11/6/11 1:48 P

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I am only in my second week of radiation and am doing well ~except for the fact that I am reading up on this Arimidex, which the Dr. has prescribed after my treatments~
I guess I am concerned about the side effects from Arimidex having read oodles of info on the web and then now here on this team. Almost to the point that I think I should get a second opinion about the subject. It all just isn't making any sense to me- as I had the tumor removed, now radiation, so why do I need this pill if they got it all (CA) in surgery? Welcome to any suggestions.
Hoping and Praying that everyone is feeling good today, God Bless,
Connie




If you want your dreams to come true, you mustn't oversleep.




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PINK-SOLDIER
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11/2/11 1:34 P

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Thanks Cindy, I take liquid vitamin b, and wear wool socks and also use heat packs on my toes, it is a temporary help, I will look into further help for it.

Inga
Co-Leader of Breast Cancer Survivor's & Those Who Care. Days Go By...So Live Your Life.

Motivational Quote:
"You have within you a supply of energy limited only by your ability to discover and develop it. In body, mind and spirit, you are endowed with capabilities far greater than you know, keep reaching for your potential. "




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CYNTHIAHOARD
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11/2/11 1:30 P

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Sorry to hear about the ongoing problem with neuropathy. I have some in my fingers and doctor says it will go away with time. I hope he is right! It seems like a long time for you to still be having problems. Hope somebody has some ideas for you. Cindy


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PINK-SOLDIER
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11/1/11 5:54 P

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I am still experiencing neuropathy for over 2 and a half years after chemo, it's worse in my feet. Anyone have any ideas to make it better? Exercise has definitely helped strengthen me, would not be this far after chemo without my daily workout.

Inga
Co-Leader of Breast Cancer Survivor's & Those Who Care. Days Go By...So Live Your Life.

Motivational Quote:
"You have within you a supply of energy limited only by your ability to discover and develop it. In body, mind and spirit, you are endowed with capabilities far greater than you know, keep reaching for your potential. "




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JAZZID
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8/11/11 2:41 P

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My last chemo treatment was in 2007, however, I remember that the fatigue and joint stiffness (... I remember that during chemo and after it was harder for me to kneel down and get back up) that I did develop during chemo definitely lasted a year and is common... After radiation, I lost weight, and developed soreness and stiffness in my back to the point where I thought that the cancer had spread to my spine, but other women experienced this as well... eventually these symptoms went away. But even now, I will never be like I was pre-cancer, I am pretty strong, workout, lift weights and have tons of energy, however, some days, it feels like a freight train ran over me, not often, but every now in then... I have to make sure that I get enough sleep and proper nutrition.

Edited by: JAZZID at: 8/11/2011 (14:43)

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JANNERUN
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8/11/11 1:15 P

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Swazy--That is the way I felt also. I almost felt bad to have long hair when so many people at the oncology office were without hair and feeling so sick. I didn't feel sick until about 2 days after my first treatment, then the aches & nausea started and lasted a couple of days. It's that darn red devil!! Good luck with your treatments.

I have been done with chemo for 3 months, but still every once in awhile I have to take a sick day and just sleep the day away. Is this usual? I've heard that the chemo can stay in your system for up to a year. Does anyone know?

Jan

There is no failure in life, as long as you keep moving. One foot in front of the other.


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JAZZID
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8/10/11 7:55 P

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Hi, I just wanted to comment on the Arimadex.. I have been on it for about 3.5 years. I have had some aches, but nothing major. But now my hair is thinning, so much that I had to start wearing a wig again... I spoke with a few women who had this same thing happen to them... But as far as pain and energy, I haven't had a problem... I have noticed, that I get more cramps in my feet, calves, upper thighs, etc., but I don't know if it is a result of me taking the Arimadex. It's good to know that there is an alternative, I never knew about Aromasin... I am glad that it is working for you...



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CYNTHIAHOARD
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8/10/11 2:41 P

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Swazy I hear what you are saying. I had my first chemo two weeks ago today and had similar feelings. Yesterday my hair fell out, yet another marker. It is one day at a time and the reality just keeps hitting me in different ways. I had my 10 day bloodwork and I was dangerously low with my white counts so will have to have Neulasta from now on. Not looking forward to the side effects of that either! I guess it is what we have to do to beat this thing. None of if fun and all of it putting my life on hold. Will continue to think about you and send you thoughts and prayers. Cindy


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CARPROTH
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8/10/11 11:31 A

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I posted earlier about my experiences with Arimadex - bone/muscle pains, lack of energy, etc. For the past 2 months I've been on Aromasin (generic exemestane), another aromatase inhibitor which for me, has way fewer negative side effects. The bone pain is gone as is the muscle heaviness. With Arimadex, I had been consistently lowering weights when exercising at the gym. Now I'm back adding them again and feel invigorated rather than drained after a work-out. I still bruise easily, but as least when I kneel on the floor I'm not getting up with black and blue knees anymore. I know some women who do extremely well on Arimadex, I'm just not one of them and am grateful there are so many alternatives and that we found one suited to my body make-up.

Carol


Shoot for the moon. Even if you miss you will land amongst the stars.


Nothing changes when nothing changes.



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SWAZY33
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8/10/11 7:49 A

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I will be starting my first chemo today. I'm as ready as I feel I can be for something like this. It's just such a strange thing...to look and feel healthy...and then go through chemo that will make me look sick ( i refuse to let it make me feel sick too!) I really think that will be that hardest part for me today. I will be sitting in infusion area with a bunch of ppl that already lost their hair and may not feel well and there I will be with all my hair (for now) and I just thinkTHAT is when the serious reality of all this will sink in. I want to try and focus on me for now but that is not really my nature. I am a person filled with empathy for others and I don't know if I can handle other ppls pain while dealing with my own. Probably sounds like a crazy thing to be worried about but, secretly hoping I will be the only one there today. Thanks for all your continued prayers and support..I'll take all I can get ;)

Live simply.
Love generously.
Care deeply.
Speak kindly.
Leave the rest to God.



BRAVEONE92
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7/2/11 11:26 P

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Cindy, Arimidex is the first pill my oncologist prescribed for me.
I had too many side effects and went off them. Other women
take them, and do well. If you cannot take them, your oncologist
will change you to another that you may tolerate better.

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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CYNTHIAHOARD
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7/2/11 1:56 P

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I am interested in anyone who can provide additional information about Arimidex. Cindy


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BRAVEONE92
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5/7/11 8:47 P

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Darthy, I appreciate hearing this information re: your cousin and
the pills. She is not the only one, that I know that has refused
to take pills. As I stated below, I am on Femara. I have been
on them about about 3 months. So far, my side effects aren't
terrible. When or if they do create more suffering for me, I
plan not to go on another pill of any kind. I know that it
might be a big risk to do so, I will be at peace with it. I
already have enough medical problems. I absolutely have
to stay healthy & strong, to take care of my 91 yr. old
Mom and my DH, who is older and is a heart patient. One
of us has to stay well.

I don't want to encourage anyone to question whether
they should take the anti hormone pills. That decision
is a personal one for every woman to make. It is a
very serious decision and I realize that it could be
a life threatening one, to decline taking them.

Edited by: BRAVEONE92 at: 7/2/2011 (23:24)
"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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DARTHY12
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4/28/11 4:49 P

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Any choice will have to be your own, but my cousin chose not to take Tamoxifin 9 years ago and she is still doing great. She told me she had already put her body through enough and she chose not to take it.


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BRAVEONE92
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4/23/11 12:54 A

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I am hearing more & more women, who took the pill therapy for
5 years and thought finally they were finished. Then the doctor
wanted to put them back on a different pill. I am sorry but I don't
buy it. I am beginning to wonder if it's your money they want,
because you have to keep going back for visits. I personally
won't do this. This is my own opinion and I am not trying
to discourage others who may feel different.

The pills are no guarantee, that cancer will not come back.
I know of a few cases personally, where cancer did come
back. I could not take Arimidex because of the side effects.
I am now taking Femara. I do plan to take it for 5 years
unless, I am changed to another. I think every woman
has to make her own decision about her body. Most
of the time, it is a very hard one to make.

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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LMK359
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4/21/11 8:10 P

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So I went to my 5 year check up with the oncologist all excited he was going to tell me that I would be done with the Tamoxifen in September then he tells me that there is evidence that beginning Femara after 5 years of tamoxifen can further decrease breast cancer recurrence. And what did I think. Didn't know there was another possible step to preventing breast cancer from returning. This has just thrown me for a loop. He said that my prognosis is already good to begin with so that the magnitude of the benefit from Femara is small but it is a possibility to take. I know you are never guaranteed you won't get cancer again but I thought once 5 years hit it was a good sign. What are the advantages to doing Femara after Tamoxifen? What are the downfalls? I don't know what to do. I almost feel if I don't do it and then it comes back I will feel guilty for not doing everything I could. Help.

Lista - in Minnesota

"Be Alive While You Are Alive"

"A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty."


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PAT3ONTHEBACK
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4/8/11 12:23 A

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I'm so sorry, EVWINGS, it sounds like you are having some really bad reactions. I didn't have any teeth problems and didn't get headaches from the Arimidex when I was on it. I still oscillate between freezing cold and hot flashes, but the flashes are quite tolerable now. Barely need to shed unless it is warm in the room already.


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BRAVEONE92
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4/6/11 10:12 P

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I was on Arimidex but only after a few days, I was so
sick feeling, weak, hardly able to do anything. My BP
went to stroke level. I took myself off them, but I called
my oncologist. She urged me to go back on them for
awhile. I took one month supply. When I went back to
see my oncologist she changed me to Femara. I have
felt so much better. I have been taking them for a little
over one month. At first, I was weak some days. Then
some days I actually feel normal! I am having alternate
feelings of my body feeling too warm, I shed clothes
and then I feel chilled, an hour later. This goes on
throughout the day. Today, I have done a little better,
but who knows what tomorrow will bring.


"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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EVWINGS
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4/6/11 6:52 P

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I graduated from my radiation treatment on March 21st. I was on chemo pill and now Arimedex for the next 5 - 10 years. My burns from the radiation are healing, but I wish they were better. I'm still peeling underarm where the lymph nodes were taken. I was in a lot of pain during the radiation. My back was hurting so bad, at one point I had to have an MRI to make sure nothing had spread and wasn't found! I lost a lot of hair, so I went ahead and had my head shaved. As it is growing in, I most likely would have had some that would have stayed, but I'm glad I had it all taken off. And doing my facial routine this morning, I noticed that my eyebrows are starting to come back!! I had one hot flash through all of this!! Most of the time I'm cold!! I haven't noticed much pain in my joints, bones, etc., but I have had my teeth end up in terrible shape. I have had 4 crowns come off and 2 teeth (my eye teeth no less) have fractured and I have about 1/2 of them left. I never did anything about getting the crowns reseeded because I felt if the radiation/chemo/combination was doing this they wouldn't hold anyway. Now I think it's been too long. My jaw still hurts on a daily basis and since I started the Arimedex I am getting daily headaches. Have any of you had this problem??? I don't see my chemo oncologist until the first part of June. He is very busy, too. He has three offices in three counties, so even if I called, I may not get a response for several days. The last thing is about my "markers". My chemo doc said two of the three were excellent, but the third was really bad. He felt that IV Chemo would be over kill and since my mass had been 1.3, he wanted me on the pills then the Arimedex. This has basically been my treatment story. I've had the Arimedex for 16 days. I hope things don't get worse on the jaw issue.

Ev

Early detection saves lives. It did mine!

Leader:
Inner Journey

Co-Leader for:
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To God - everything.



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PAT3ONTHEBACK
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3/31/11 6:09 P

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Hello, Carproth--thanks for posting. I was on Arimidex first. The muscle pain was bad enough that i felt like a cripple sometimes. An old old lady most of the time. When I could stretch it out, I felt fine for the most part. I was more susceptible to injury and that was the big downfall. When I switched off to Femara, I immediately noticed a huge improvement in energy level and it was strange that nothing hurt. I had a tailbone pain which caused me a lot of discomfort on a driving vacation we were on. As soon as I went off Arimidex, the pain was greatly reduced; gone completely in a month or two.


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CARPROTH
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3/27/11 10:53 A

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I've been on Arimidex for 6 months and have noticed a marked increase in bone aches - not the joints (used to that with osteoarthritis) but the arm, leg, and shin bones will start predicting the weather even though it's staying exactly the same. Like yours, my pain/ache doesn't come immediately after exercise, but will manifest itself erratically. I spoke with my doctor at my 6-month follow up this week and he wants me to monitor instances and keep a notebook on side effects. He said sometimes it takes a while for a woman's body to adjust to the meds, but if my situation persists, he'll try me on another aromatase inhibitor - several out there that do basically the same thing, but individuals often react differently to specific formulae. Have you tried any meds other than Femara, and if so, what were those results?
Carol

Carol


Shoot for the moon. Even if you miss you will land amongst the stars.


Nothing changes when nothing changes.



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PAT3ONTHEBACK
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3/25/11 11:38 P

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I am on Femara, an aromitase inhibitor, like Arimidex. I know it causes muscle pain and weakness. What I have been noticing is muscle pain from exercise, like the normal soreness you get from doing something new, except that it doesn't show up for two or three days. It seems to take so long to manifest. I did a new exercise on Tuesday with the elliptical, and it was well into Thursday before I felt it whereas I used to get sore within 24 hours of the new exercise if not the same day. In the same way, it seems to take forever to add strength, and then I lose it awfully quickly. How does the muscle pain and weakness manifest itself for you?


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PINK-SOLDIER
PINK-SOLDIER's Photo SparkPoints: (105,715)
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3/21/11 3:00 P

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Please post any concerns or if you are in need of support during your breast cancer treatments. Discussion is also open for drugs taken after treatment, such as tamoxifen.


Inga
Co-Leader of Breast Cancer Survivor's & Those Who Care. Days Go By...So Live Your Life.

Motivational Quote:
"You have within you a supply of energy limited only by your ability to discover and develop it. In body, mind and spirit, you are endowed with capabilities far greater than you know, keep reaching for your potential. "




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