TRIPLE POSITIVE GROUP
Comments
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Dragonfly -- very happy to hear that your onc said its benign. I hope you find relief for the pain so you can sleep.
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dragonfly great news!!!!!!!!
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dragonfly - Do you think it is related to the tamoxifen? Could you switch to an AI?0
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Omaz I definitely think this is related to Tamoxifen. Although the docs all keep saying this isn't "typical" for Tamox I don't think it's a coincidence. The shoulder and hip problem began within 6 weeks of starting Tamox and the back pain onset was a month later. I can't believe all three areas could develop problems in such a short period of time for any other reason. A few docs are suggesting an autoimmune problem but I'm not buying that. I finally have an appt with my new MO on 5/3 so I'll definitely be asking about making a change if it's possible.0
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Yay Benign!!!
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dragonfly - thank goodness they are saying a B9 lesion, you must be so relieved. Hopefully your new MO can get to the bottom of your pain. Seems pretty coincidental on the Tamox timing. I went off Femara briefly when I had exchange surgery and I could feel the difference in my joint pain, it dissipated quickly, but came back not quite as intensely when I started back on it. I am interested in whether it increases the longer I am back on it. It seems like the way to determine if this is linked to Tamoxifen is to have you go off briefly and see if the pain goes away. I now have "trigger thumb" on my right (dominant) hand, which I have read is attributable to AI's. I am currently waiting it out to see if it goes away, but will bring it up with my MO in May if I am still having trouble. I have to stabilize the thumb to not have it be painful 100% of the time, it is annoying. This journey is not for sissies, is it?
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Saw the PS today and all looks "fabulous" according to him. Lol. They do look good. The lump turned out to be a keloid that formed where the alloderm meets the muscle, or something like that. Whatever, it is not cancerous. On the way out, I stopped at my oncs office next door to see if my BRCA results were in, and they were...negative. So...it looks like the hysterectomy is out, as gyn didnt recommend it unless it was positive. He said he preferred to monitor me closely, and I will probably go off Tamoxifen to an AI in the next year.
My urologist contributed my kidney stone that had been minding its own business for years and then suddenly growing, to the chemo. ONC said he didnt think so, but Urologist said he isnt buying it.
If I wasnt planning to be the old lady that crabbed about every ache and pain before, I will be now!0 -
HOORAY DragonFly and Fluff! We can't ask for anymore than that! Congrats.
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Lol Arlene.....we can sure ask, but it doesnt always get us anywhere!
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Thank you Lago for your reply. I couldn't quite work out how to do the diagnosis thing at the bottom but I had a1.7 cm Grade 3 tumour removed via quadrectomy March 12. Sentinel Node Biopsy which showed no node involvement and no LVI. I am having a CT Scan and MRI today. I am due to start chemo in about 10 days 8 x FEC followed by 5 weeks radiotherapy after which the consultant says Herceptin and Tamoxifen.
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loopsy - hello, welcome. To add your diagnosis info, if you want to, go to the top of the page and click on "My Home" and then click on the red bar that says "Edit My Diagnosis" and then answer the series of questions and your diagnosis info will fill in on the bottom line when you post to different threads.
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Thank you, I'll try to do that now.
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Loopsyloo You sound like you are in good care. They are treating you aggressively. Your tumor is small and no nodes or LVI is excellent. While there are not guarantees your prognosis looks really good. Your onc should be able to give you your recurrence stats for the next 10 years. I think you will be pleasantly surprise how low it is… NED (no evidence of disease) stats are high
Do try and get your stats up there. More other know about your diagnosis the more we can give you information.
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Just testing I have added the diagnosis.
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loopsy - the only thing missing is your cancer type (IDC, ILC...), otherwise perfect!
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Fluffqueen - FANTASTIC news! All around! Yay!!!
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loopsyloo i had the same chemo regime as you did (very common in Canada and UK) if you want any info/experience with these drugs please feel free to private message me. The only difference is that I had FEC-D - doceataxol, you may want to ask if this will be part of your treatment plan. Adding a taxane (taxol or taxotere) from my understanding, to your drug combo is very important. They will start you on herceptin during the taxol0
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hi hillck! its been awhile - i have sent you a PM
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FEC-D (or T) is pretty standard here in Australia too. I am now 4 cycles into T (Taxol) and finished up FEC last month. My 3rd and last FEC ended up just being FE due to liver function problems...
FEC was physically stressful trying to stay ahead of the SEs but I found they were all manageable. Taxol, although it has less SEs I am finding far more tiring and emotionally draining. I think it's because the main SE is pain (and a bit of diarrhoea) and it is restricting my life much more.
I really recommend you read the pinned thread with advice about SEs and definitely get stuff for dry mouth, mouth sores, constipation, hand moisturiser, dry eyes... Dry seems to be the theme with FEC...
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Hi girls, new to this board but diagnosed in 2009. Just checking in to see how everyone is doing and who is still around. Here is a curve ball for you. Has anyone gotten pregnant after treatment? I was diagnosed when I went into to chat about having another baby and yes I have to beautiful kids already but I wanted another. We have a very small family (mom and step dad) and I want my grand kids to have cousins and relatives to enjoy life with. What are your thoughts and has anyone made this decision. Yes I am older at 42 but seem to be fully functional LOL. TCH rads, neratinib trial and vaccine trial in seattle just finished in feb.
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shelclaire have you red this: linky and this linky 20
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Ashla,
Sorry it took me so long to get to this! I've been BUSY with teen driving...haha.
Ok, ab flab is stubborn and in my experience there is only one way to get rid of it and it is NOT crunches....I actually don't do ANY ab work outside a few core moves because the abs are engaged all the time when I do weight training and cardio. Most women have fabulous abs under that stubborn fat layer!
This is the only thing that works to make MY stomach flat.
Cut sugar.
Oh that sounds simple, but alas, it is NOT. There is sugar in EVERYTHING, milk bbq sauce, cheese sauce!. And if you want fast results, cutting sugar also includes NATURAL sugar for a week or so. So, no fruit.
There is no need to re-invent the wheel. I can honestly say, every spring for bikini season or any time I need to break my sugar addiction I go to the South Beach Diet, phase 1 (no sugar in any form)...if its to break the addiction I do it for about 3-5 days and I'm good...if I want to lose my middle I do it for a week, maybe two, and then back to normal eating (watching calories).
If you don't want to go that route, just cut back your sugar intake to less than 15 grams of added sugar a day. Your middle will melt off. (Side note: Kroger has "Carbmasters" yogurt. Most yogurt is TONS of sugar....but Carbmasters isn't. I use it as dessert when I hanker for sweets while doing Phase I of SB diet.)
You may be saying, Hey Ton Lee I don't have an issue with sugar!
The science behind the nutrition shows fat stored in the belly MOSTLY comes from sugar consumption when caloric intake is maintained to weight loss levels.
I don't know how active you are, but if you want to PM me your vitals, height, weight, activity level, I can put together a loose program for you. (This is the obligatory, consult your doctor first remark.) But, it's not hard. You have to burn more calories than you consume, and the calories you consume shouldn't contain more than 15 grams of added sugar a day.
After the initial two week no sugar thing, you can introduce fruit back into the diet. I love fruit and find it hardest to resist this time of year....but if you can do the diet for two days a week even (no sugar) and the other 5 days maintain a calorie deficit, the science shows you will lose.)
Tonya
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I'm new here and need some help about protocol choices. I've had one infusion of AC in a planned ACTH regimen. Only now have I had a chance to read a lot of the studies and potential long-lasting side effects of the various options. I'm particularly interested in the options without the adriamycin. Is it possible to change protocols even though you've started one already? I feel a bit railroaded into this one and don't feel I'd have chosen it if ALL of the facts had been laid on the table. In fact, when I asked about the non-anthracylcline options, my oncologist simply said it was not standard of care so I let it go. I know more now and don't want to let it go. Thanks for any info anyone can give me. Roz said that lots of people here have done TCH.
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Not sure Annieug. I did the TCH instead, my onc did give me the choice. I would call your onc first thing Monday.
Fluff, great news on b9!! I just got my BRAC testing back this week since we are at a point un treatment that its time to perhaps switch to an AI. Since I am BRAC negative, I guess no oo will be done.
I have had 2 tiny lumps pop up on my chest. One is about 3 inches above my breast, on the sternum. It almost feels like a small lymph node, but is not in the clavicle region, and is not near my neck either. I go in for zometa this week, so will get it checked. I am hoping its just some sort of lipoma, etc from 2 rounds of fatgrafting.
I hate the feeling of "What if...?" with every little twinge.
TonLee, great advice. I try to keep off sugar as much as possible. Not easy. I do feel lots better off it. Once you get in the habit, it's easier to keep rolling with it. My vice is carbs...bread, muffins etc. I try to limit them to a treat every now and then!0 -
annieug - Welcome to the group! TCH is an accepted protocol for HER2+. Here is a link to the main page for the NCCN treatment guideline (National comprehensive cancer network). You will need to sign up and login but then you can have access to the information. If you look at the guidelines for treatment both AC->TH and TCH are listed as category 1 regimens.0
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Tonlee...
Thx so much for your intelligent answer. It makes a great deal of sense . I'll put all my info out there for everyone to see. Goodness knows after talking about hairloss, my boob size , diarrhea and ovaries..I've got nothing to hide here. Maybe it'll be useful to others.
It's the odd weight gain that puzzled me.
I'm 5'6" and prior to dx I weighed 128. My bone structure is very small so that's actually 10 lbs higher than I've been most of my adult life. During chemo I went up to 140 lbs at least. After chemo I seem to have lost about 6 lbs just being more active and off the steroids.. I was 134 this am .
The problem is that all of the added weight is in my middle. My belly, flabby abs and my boobs even seem bigger. I have big boobs to begin with. I read that steroids can result in loss of muscle tone in the extremities and pack it on in the torso. But The sugar thing seems very plausible.
I have never been a sweet eater but I have been packing in fruits.....strawberries, mangoes, watermelon, blueberries . Several servings every day which I never would have done before.
THere was a very interesting 60 Minutes last week. One of the topics was sugar and how bad it is for us. He attributes lots of medical problems to sugar..both naturally occuring and processed. The Harvard MD said that the reason we crave it is because in the evolutionary process there has never been a naturally sweet food that is poisonous. He also said early man did not have access to year round sugar to eat enough to harm him.
Right now I'm just getting my mojo back. prior to rads and walking is the only exercise I have started.
OKay. I'm starting now. No sweets for 2 days.
Thanks again for your expert advice.
Send me the bill!
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Ashla,
Even with a small bone frame your weight is pretty good
If you can fit any weight bearing exercise in (even in place of walking if you have to choose between the two) try to do that...chemo/steroids actually ate up some of your muscle, which lowered your metabolism...so your body isn't as "forgiving" as it used to be....but you can get it back, just build muscle.
You don't have to go to a gym.....I love this site...a little hard to navigate, and don't be intimidated by the hard bodies, it is really good body weight bearing exericses.....and SHORT.
http://www.bodyrock.tv/category/bodyrockers/
Then just try to limit sugar two days a week...and if you don't notice a big difference, then try cutting white flour as well and ordering the SB Diet book.. (some people metabolize white flour almost like it's sugar when it comes to insulin levels in the blood after eating it...and that stores fat.)
Keep me posted!!
Good luck!
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Thanks, Omaz.
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annieug, if you are not comfortable with the protocol you are on, be sure to discuss this fact with your oncologist. If you are unsure about what s/he is advising you to do, get a second opinion. I met with 2 oncologists before selecting which one I wanted to work with and I am glad I did as this increased my confidence in my oncologist.
I don't know anything about changing protocols once you have begun, so this would be a good question to ask your health care team.
I can tell you that our diagnoses are very similar and that I did do ACTH. That being said, however, treatment decisions need to be individual decisions and you need to be confident with what you are doing.
You can also call the American Cancer Society and talk to someone. Their 24 hour number is 1-800-227-2345.
Hope this helps!
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I think Easter set me back on the sugar thing--too much candy around for the kids. I find the research on a possible vaccine against HER2 pretty interesting. And the aspirin research. I think my father has reached 90 years of age because he is a regular aspirin user. Tomorrow I see MO and get results of 2nd MUGA. I hope it is okay since my mom has been having heart issues, and I was only at around 60 before.
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