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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
9/17/15 3:50 P

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I just found the answer on www.breastcancer.org, and the answer is yes to do daily moisturizers. There are a lot of other tips on here as to skin care. I'll post the tips since there are a few of us about to undergo radiation therapy. Here you go:

www.breastcancer.org/treatment/radia
ti
on/skin/care


TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
9/17/15 2:17 P

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This is a question about daily moisturizers during radiation... I was told to do daily moisturizing during chemo but didn't, and my skin is fine. Now I'm being told to do daily moisturizing during radiation and wondering if I should or not. I'm actually being told that I should start the daily moisturizing now - three weeks before radiation starts! I'm wondering what others have to say on the subject.

TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
9/12/15 2:26 P

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Abby Sharpe, I've never been pregnant, so I don't know what pregnancy brain feels like. But it's good to know it's similar, so that I can describe it to other women who have been pregnant. So thanks for the analogy. I haven't had any skin problems with the chemo, so hope my skin will fare well during the radiation too. I met with the radiation oncologist last Thursday and we had a great meeting. We talked about my concerns about side effects, and I feel comforted by our conversation, so I've decided to do the radiation. I was told my hormone pills will cause hot flashes. Is that what you mean by the pills?

Layniemac, I'm stage I, triple +, bilateral. I've just finished AC chemo on Thursday, and will start Herceptin in three weeks, and radiation in about four weeks. They're planning on doing 15-20 radiotherapy sessions on both breasts for me. So we'll be going through this together. I hope you stick around so we can support each other through this.

I had peripheral neuropathy for many years prior to starting cancer treatment, and so far it hasn't been made worse by treatment, and I hope that stays the same. I'm on ibuprofen and Baclofen, which helps a whole lot.

Edited by: TIGERSEYEHEART at: 9/12/2015 (14:27)
MATER88's Photo MATER88 SparkPoints: (197,497)
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9/7/15 10:08 P

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I'm so glad to hear that! I hope you do well on the rest of your journey. emoticon emoticon emoticon

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LAYNIEMAC88 Posts: 3
9/7/15 6:28 P

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Hi! I am also triple + and am currently in remission from a Stage 3 diagnosis in February. I am currently doing Herceptin alone and radiation therapy. Herceptin does not make me feel any side effects except for one time when. I was on antibiotics and the nurse thought that was the culprit. I have had 3 radiation treatments out of 29 and so far, no real side effects.
Leftover side effects from chemo is still some chemo brain i find that sometimes I cannot find the words I want to use or I get a little confused sometimes. It's not as bad as it was during my 4 drug cocktail as it is now on Herceptin. I still have neurpoathy off and on and it hurts when I do have it. I feel pretty good overall.

ABBYSHARPE's Photo ABBYSHARPE SparkPoints: (12,295)
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9/4/15 9:47 A

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I know I'm new here, but I went through a lot of this, too. Chemo brain was very similar to pregnancy brain. And my medication caused hot flashes. I didn't need any lotions for radiation until near the end, and then for a few weeks afterward. But the good news it when it's completed, it's over.



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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
8/27/15 7:12 A

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Hi Mater. I'm so happy you replied too! Thank you for your guidance so that I understand now that chemo brain is not just from chemo drugs. Did your family find the information helpful?

About 20 years ago, I was on a concoction of meds that caused cognitive dysfunction, so I may know where you're coming from. It was really debilitating and disruptive in my personal life and professional life. I couldn't even follow a simple recipe! I'd get routinely lost mid-sentence, so could barely carry on a conversation. I constantly forgot what I was doing. Things that were once routine I had to really think about consciously in order to complete the task and do it correctly, like brushing my teeth, getting dressed, driving... The world inside me and outside me was a completely different place. Is this something you can relate to? In other words, does this sound similar to what you're experiencing?

Edited by: TIGERSEYEHEART at: 8/27/2015 (07:13)
MATER88's Photo MATER88 SparkPoints: (197,497)
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8/23/15 6:00 P

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Christina,

Thank you so much for the link you posted about "chemo brain." My medical oncologist has made me feel so much better by telling me that it's the meds. But this article explains it in more detail.
I am going to print this article out and show my husband and daughter.
I really appreciate that you responded.
emoticon emoticon emoticon

Edited by: MATER88 at: 8/23/2015 (18:01)
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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
8/23/15 5:38 A

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I just found an amazing article on chemo brain. MaryAnn, You're right, that hormone therapy can also cause chemo brain, as can other drugs used in cancer treatment - not just chemo. Here's the article, in case anyone is interested:

www.cancer.org/treatment/treatmentsa
nd
sideeffects/physicalsideeffects/chemR>otherapyeffects/chemo-brain


TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
8/23/15 4:51 A

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Hi MaryAnn.

Thank you so much for your heartfelt reply. I'm so sorry you're suffering from cognitive dysfunction from treatment. I'm wondering if what you're describing is what they call "chemo brain," which is a side effect of chemo. This is something I'm extremely worried about too, as a result of the AC chemotherapy that is almost done. Chemo brain can start during chemo or after, and it can last up to a few years, or be permanent.

Re the hot flashes, I'm already suffering incredibly with these, and have been told they will likely get worse - like has happened with you.

Again, thank you for reaching out! emoticon emoticon




Edited by: TIGERSEYEHEART at: 8/23/2015 (04:54)
MATER88's Photo MATER88 SparkPoints: (197,497)
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8/20/15 7:59 P

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That is a lot to consider. I had a tumor in both breasts and I had a lumpectomy on each side and a lymph node on each side removed, too. I sailed through radiation with no problem at all. I did my best exercising then. I wish I had been prepared better for the meds I got put on. I am way past menopause so I wasn't given tamox. I am taking Arimedex. That's when I got side effects. I've had hot flashes (although it is better after two years.) But my memory problems have been significant. I can forget what I'm taking about in the middle of a sentence. I have talked to my medical oncologist about them. She has offered to put me on something else. But since that was her drug of choice I have decided to continue taking it. One of my health care advisors told me right now they say to take the pills for five years. But she said that they may recommend another five after the first. Oh, I also now have intolerance to both heat and cold. It drives my husband crazy. I do so hope that your journey will be blessed and you can come out the other end just fine.
MaryAnn emoticon emoticon emoticon

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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
8/14/15 11:22 A

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Kay, thank you so very much for your reply. You're very profound and straightforward. I really appreciate that.

I don't spend a lot of time on researching. I was a medical transcriptionist for 30 years, so I can easily read information and I am very good at finding information. I agree with you about cancer forums, which is why I decided against joining one - other than SparkPeople. There is also a whole lot of misinformation floating around forums. With the bare minimum that I've read, that's enough to have me incredibly worried.

Like you, I have very aggressive cancer too. I'm triple positive, which would have been a death sentence many moons ago, but now they have treatment for hormone positive cancers and HER2 positive cancers. So as long as I do the treatment, my prognosis is better. But then I'm also at higher risk of side effects, since each treatment has side effects. Also, my mother had premenopausal breasst cancer, which means a more aggressive cancer. On top of it, I'm highly Ki67 positive, meaning the cancer cells are growing at a rapid rate.

So we're kind of in the same situation, but not, in the sense that we both have aggressive cancers. I wonder about quality of life, in my case. Would I rather have 5 years without the side effects of brutal treatment, then die of cancer? Or would I rather have 10 years with side effects of brutal treatment and then maybe die of cancer?

SIMPLELIFE4REAL's Photo SIMPLELIFE4REAL Posts: 9,709
8/13/15 7:10 A

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Christina,

I understand where you are coming from with your concerns. I think, in my case, since I was triple negative, grade 3, stage 2b that I wanted to do everything I could.....knowing that I didn't have any targeted treatments available. You are on the opposite end of the spectrum having targeted treatments for Her2+ and er/pr+ and being treated in both breasts at the same time. Are you triple positive? Your treatment plan is much longer than mine and more involved.

I imagine you are spending hours on the computer doing research on everything you can find about your particular form of breast cancer and it's treatments. I did the same thing for months and months. I still get into "research mode" from time to time.....but that's another story.

I think it's great that you are doing all this research and questioning things. We each have to make our own decisions because we are the one that ultimately lives with that decision. One thing I will say is that people tend to post on the threads at breastcancer.org and other sites like that when they are having problems with side effects or have had complications arise. I noticed that in pretty much every area of treatment. I think it gives a lop-sided view of things.

I can only really speak for myself, and the long-term side effects I've experienced with treatment. On a scale of 1 to 10 (with 10 being the worst), I would probably put my SE's at about a 2. I have: (1) very mid neuropathy on my feet from the taxol; (2) some joint paint that I attribute to the chemo; and (3) the firmer, drier breast from rads. My risk for LE from the ALND and rads is the SE that I worry about the most.....but I seem to be fine with that two years later. Heart issues and secondary cancers are a lot less likely to occur than LE, but can be obivously much more serious. For me, I felt those risks were one's I was willing to take in exchange for a significantly reduced risk of stage IV breast cancer. I know I can still go to stage IV at any time, but at least with the treatments, I have a chance of making it through. Without the treatments, I'm sure I would be stage IV by now and most likely gone because grade 3 triple negative cancers tend to be very aggressive.

I don't know if that helps you any with your decision-making process.

Wishing you the best....




Kay from Tennessee



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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
8/11/15 2:59 P

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Thanks, Kay. I found the post. OMG is he ever long winded! LOL! That's great info, though.

Not being able to do reconstruction in the future is one of the things that concerns me too in that list of side effects. Even the side effects you describe of a firmer and drier breast may be unsettling. Definitely a higher risk of LE is unsettling!

As I said when first joining this forum, I'm bowled over by the brutal side effects by each treatment. It's positively frightening! I honestly don't know if I will go past the AC chemo in treatment. It's just too scary. I could die from treatment. Or I could be left with other serious diseases - even another type of cancer. Or all the treatment I have could all be useless if the cancer comes back. I would think those thoughts went through your head too. How were you able to keep going through treatment, despite all these very, very serious risks? I'd really appreciate your insights.

SIMPLELIFE4REAL's Photo SIMPLELIFE4REAL Posts: 9,709
8/9/15 9:31 P

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I'm sorry the link didn't work. I was trying to direct you to a post in breastcancer.org. It's a great post. To find it go into the discussion board part of the site and then go under the Radiation subsection. It's the third pinned post under that section. It's called "A rad onc weighs in on radiation "burns".

As far as side effects of radiation itself, I haven't had anything significant. My radiated side is firmer than my unradiated side and my skin is drier on that side and it's very minor. My biggest gripe about radiation is that it makes it much harder to do reconstruction in the event that it's ever needed. It also makes lymphedema more likely. I had a complete axillary lymph node dissection because there was cancer in 2 nodes. Between the ALND and the rads, I'm at a pretty high risk for LE, but I haven't had any problems so far. Knock on wood!

Kay from Tennessee



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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
8/9/15 5:00 P

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Thank you for your reply, Kay.

The link didn't work. Thank you, though. I've had lumpectomies to both breasts. They're recommending radiation to both breasts because I had cancer in both. My breasts are small to moderate sized too, so that gives me hope.

Re the lotions and potions... I was told I'd need daily moisturizers for my face, scalp and body for this AC chemo too, but so far I've needed barely anything. It's extremely humid where I live and I have very healthy skin to begin with, so I think those factors are working in my favour. Perhaps that will be the same with radiotherapy?

The hospital for radiotherapy is about 40 minutes walk, or 10 minutes walk and the rest by bus. So it's doable.

Yes, I understand the fatigue is almost a guarantee from what I've read and heard. The MIL of one of my friends back home in Canada had treatment for breast cancer, and she had a lot of fatigue too. My mother had breast cancer at 49 yrs old and had lumpectomy and radiation. I remember her being very tired from that.

I read a very disturbing list of side effects and I'm wondering if you can give me your opinion on this. Perhaps others would like to chime in too?

www.cancerresearchuk.org/about-cance
r/
type/breast-cancer/treatment/radiothR>erapy/breast-cancer-radiotherapy-sid
e-effects


SIMPLELIFE4REAL's Photo SIMPLELIFE4REAL Posts: 9,709
8/7/15 1:07 P

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Here's an excellent post written by a radiation oncologist that really helped me to understand what happens to our skin during rads treatment. community.breastcancer.org/f
orum/70/to
pic/783321?page=5#idx_121


I bought all kinds of suggested lotions and potions, but ended up using very little of it because I had miminal skin breakdown (at my collarbone area). I can't remember if you had a lumpectomy or MX. It seems that people with small or moderate sized breasts that have a lumpectomy don't have much of an issue with skin breakdown. I fell into that catagory. My biggest issue during rads was fatigue....a lot of that was a hangover from chemo and surgery. I decided not to fight it after the first couple weeks and got into the habit of coming home after rads and taking a nap.

I hope you don't have a long drive to where ever you are going for rads. I did mine at the local hospital instead of going to where I went for chemo and surgery. It was nice to be able to get in and out quickly.

Kay from Tennessee



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TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
7/30/15 12:39 P

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Yay! I just found an excellent source of info on radiotherapy. Here it is, in case anyone is interested:

www.breastcancer.org/treatment/radia
ti
on


TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
7/30/15 12:11 P

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I actually just found everything I need to know about herceptin on one site. This is from the pill manufacturer's website. So I don't need more information on that. Here it is in case anyone is interested:

www.herceptin.com/breast/herceptin

So I'm still interested in hearing about people's experience with radiotherapy for breast cancer. Or if anyone has a good website to share that explains it?

TIGERSEYEHEART's Photo TIGERSEYEHEART Posts: 3,775
7/30/15 8:26 A

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Could people share their experiences with Herceptin infusion and radiotherapy? I'm doing cyclophosphamide (Cytoxan) and doxorubacin (Adriamycin) chemo right now. When that's done in September, I'll be doing radiotherapy, Herceptin infusion and pills (for estrogen and progesterone positive - I don't know what pills yet). So I'm wondering if people can share their experiences with Herceptin and radiotherapy.

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