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SNUZSUZ's Photo SNUZSUZ Posts: 13,962
9/25/12 7:32 A

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That's exactly how I feel about my oncologist and radiologist! My radiologist is the best doctor I have ever had. I wish he would be my doctor for everything:)

Sue (snoozy suzy)
PST. Carmichael, California
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JENFIELDS13 SparkPoints: (1,453)
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9/22/12 2:25 P

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Hi All,
I sure do understand the weight gain from chemo and steroids. I always thought you lost weight on chemo. My doctors and nurses told me that you don't want to lose weight on chemo. Okay so now I am just a week shy of a year post chemo and all I seem to want to do is eat and gaining weight comes with it. I had an allergic reaction to one of the chemo drugs so they really pumped the steroids into me and said that it would take 9 months or so before everything was out of me! I like this forum and understand all that you are going through. Hope you find a new oncologist as it is important to connect with your doctor. They are helping you stay alive. My doctor doesn't have the best bedside manner but she is incredibly good at what she does. Thankfully I really connected with my radiation oncologist and she has been great. I am in remission from Stage 2C breast cancer and am BRAC 1. I need to lose weight and get healthier to keep that cancer at bay. Keep fighting and trying your best!

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SNUZSUZ's Photo SNUZSUZ Posts: 13,962
9/20/12 8:31 P

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I have an appointment for real this time for the PET scan and it is exactly one year to the day since the first chest xray when they found the cancer. It's for the 26th and then I have an appointment on the 28th for the results.

Sue (snoozy suzy)
PST. Carmichael, California
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JILLINOISRN's Photo JILLINOISRN Posts: 42
9/20/12 4:03 P

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My primary doc had no problem getting me a referral to a new onc. The new one has been around the block awhile, and did some of his training at Johns Hopkins, which I'm very happy about. I haven't made an appointment yet, since I'm due for a MUGA scan to see what my heart is doing (young fat-phobe ordered that), and I kind of want to just get that over with before changing so the new guy has the latest info. I'm on 3x/year appointments now, and yearly bone marrows, so that's good. Nothing 'major' going on mid-switch.

Now just to get rid of the weight ! I WANT to get rid of it (skinny guy didn't seem to think I was interested in losing weight, when I've been actively working on it since I cleared the 3-month period when stuff was leaving my system). I even told him about finding Sparkle, and he didn't get it. Oh well...

I thought I'd get 'skinny chemo'- I got the fat stuff ! But at least I'm alive to whine about it !!


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MARYMOIR SparkPoints: (28)
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9/16/12 11:12 P

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Definitely sounds like time for a new onco. I switched after my chemo was over (liked the 1st guy, but couldn't get in to see him for post treatment SEs cuz he became head of ACOG after that) so I always got a random NP. New guy much more thorough and even though it's sometimes hard to see him, his RNs and NPs are very good at getting his opinion and getting back promptly. We pay these folks a lot of $$, so we deserve to be taken seriously (and not insulted!!)

Good luck with your new doc

SNUZSUZ's Photo SNUZSUZ Posts: 13,962
9/16/12 5:28 P

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I love this team! It is so reassuring to know that others feel the same way as I do and have gone through so much of the same things. Not that I would wish that on anyone, but it is nice to be able to talk to other people we similar experiences:)

Sue (snoozy suzy)
PST. Carmichael, California
glassslipper.info


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MOM2ACAT's Photo MOM2ACAT SparkPoints: (155,562)
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9/16/12 3:44 P

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I think it's good idea to find another oncologist, it's important we feel comfortable with out doctors, especially the ones we spend a lot of time with. I see more oncologist once per month, more often than I see any of my other doctors.


My name is Shari; I have been a Sparker since July 2006, and living with Stage IV breast cancer since 2007.

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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SNUZSUZ's Photo SNUZSUZ Posts: 13,962
9/16/12 8:24 A

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I agree with Faithandjoy! You are the one that beat it! And stress is the worst thing for healing! I hope you find a good doctor this time;)

Sue (snoozy suzy)
PST. Carmichael, California
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FAITHANDJOY55 SparkPoints: (998)
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9/15/12 7:00 P

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Hang in there, it will get better!!

Remember he might have helped with the scheduling of the chemo but you are the one that beat with taking the chemo and all the side effects.. Don't let this one person bring you down. Celebrate who you are and what you have already accomplished in your life.

This is the beginning of a new life for both us..let us embrace it and run with it!!!!

ƸӜƷ**. ƸӜƷ**. ƸӜƷ**. ƸӜƷ
Carmen

JILLINOISRN's Photo JILLINOISRN Posts: 42
9/15/12 5:25 P

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My primary doc agreed to send a referral, no problem :) I've been seeing someone a different hospital 'group' of doctors, so there will be some need for information transfer, but that's fine. The guy I saw did a great job with the leukemia- but now it's just painful to go see him. :(

I thought I'd get 'skinny chemo'- I got the fat stuff ! But at least I'm alive to whine about it !!


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SNUZSUZ's Photo SNUZSUZ Posts: 13,962
9/15/12 10:08 A

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You really should ask for another oncologist! That doctor sounds like a nightmare! My oncologist does not have much of a bedside manner, but at least he doesn't say negative things to me. He doesn't say anything at all, that's the problem! I have been thinking about asking for a different oncologist too because fo that, but your dr. sounds a lot worse!

Sue (snoozy suzy)
PST. Carmichael, California
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JILLINOISRN's Photo JILLINOISRN Posts: 42
9/14/12 8:08 P

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Sounds good emoticon

I thought I'd get 'skinny chemo'- I got the fat stuff ! But at least I'm alive to whine about it !!


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FAITHANDJOY55 SparkPoints: (998)
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9/14/12 7:41 P

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Then I would say that we will be great friends and ecnouragers for each other. I like this site too although I am still tryign to figure my way aroudn it just joining this week. I am so not computer literate...that takes me some time to figure things out.

This is how I see thigns...God might have chosen the paths we are on, we get to choose how we will walk them...I plan on trying to stay positive...smiling emoticon , singing

♪♫*♫♪♪
835;♫♪ ..dancing (/) (\) (/) and loving ♥ with all that I have.

JILLINOISRN's Photo JILLINOISRN Posts: 42
9/14/12 7:04 P

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Thank you so much for your kind words.

I only had a few days of steroids, but remember the reason I wanted off of them- I was hungry ALL of the time. I was lucky I didn't need them (they were for nausea relief), and I can only imagine what it might be like having to take them for asthma.

I've been about 65 pounds heavier, and at one point was 120 pounds less than my highest weight. The roller coaster is exhausting. I'm so glad I found this site ! I like that it is based on being healthy, and not as rigid about any specific number.

I too am always around, and would love to be of use to someone (disabled nurses don't make good patients- LOL). emoticon

I thought I'd get 'skinny chemo'- I got the fat stuff ! But at least I'm alive to whine about it !!


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FAITHANDJOY55 SparkPoints: (998)
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9/14/12 6:26 P

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Thanks for the message..I just read your message about yourself...I am sorry you had to go thru what you did...I also gained weight with my chemo/radiation. My oncologist abhors fat people too...horrible bedside manner which I finally pointed out to her. I eat so healthy that it is sickening..keep track of what I eat and have a roommate to prove it. Most of mine comes from the daily steroids I have to take for my asthma..since getting asthma 3 years ago I have gained 100 pounds, it is not easy to take off. Do not be discouraged, stand up for yourself and be proud of who you are and what you have accomplished with beating your cancer. Tell your oncologist that you worked just as hard actually harder at beating it since you were the one putting the chemo into your body with all of the side effects. I am proud of you as I know it surely isn't easy..I only did 3 months of chemo, it was not a treat.
Leave me a message anytime you feel like getting it off your shoulders..I know what you are going thru and how you feel.

JILLINOISRN's Photo JILLINOISRN Posts: 42
9/14/12 5:29 P

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Since stopping chemo a year ago, I've been trying to lose the weight I gained while ON chemo. I gained 40 pounds (not on steroids). Insulin dose and diabetes are also in the mix, along with activity limitations due to fibromyalgia, bone spurs, degenerative joint and disc diseases, and a severe intolerance to being overheated (I wear ice vests to appointments and the once/month trip to the store and pharmacy).

EVERY appointment since last September (end of chemo- was on for 19 months) has been focused on my weight. At least %50 of what he says to me is about weight. He's told me to not eat unsweetened fruit. (I don't always get in one serving of unsweetened fruit/day- I'm not fat because of fruit emoticon ). Told me to go swim in the YWCA's heated pool- as I'm sitting there in an ice vest. Asked if I sit at home and eat cookies, candy, cakes, and chips all day. I don't even have those things in my home. (and that was kind of snarky, IMO).

Maybe they don't have fat people in Iran, I don't know. I've tried to tell this guy to back off, but he keeps it up. The only time he backed off is when I started crying- then turned it into something about him- he'd worked hard to keep me alive, and didn't want me depressed- I wasn't depressed, I was/am FRUSTRATED. But it was about how hard he worked. I got the point, but it's not about him. emoticon

The guy did a great job dealing with the leukemia. I was half dead when I got diagnosed. I've had 4 'clean' bone marrows, starting with the one in the hospital after the induction chemo (spent 6 weeks inpatient initially). I'm now on 3x/year appointments and yearly bone marrow biopsies.

I sent a request to my primary doc for a referral to another oncologist. I have been dreading seeing the other guy for quite a while, and it's not helping the old eating disorder messages that I fought hard to deal with. I don't want to be a wimp, but this guy is a negative now. His job is done. I'm seeing an endocrinologist next week to deal with the insulin issues (were fine before chemo).

I thought I'd get 'skinny chemo'- I got the fat stuff ! But at least I'm alive to whine about it !!


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