TRIPLE POSITIVE GROUP

I am one year out from completion of chemo and we can all agree that it is a journey through hell.  I also had a UMX, no reconstruction, plus 28 sessions of radiation.  Thirteen years ago I had DCIS, stage 0 with one per cent chance of recurrence after undergoing a lumpectomy plus radiation.  Imagine my shock to have a much more serious form of cancer and a large tumor under my arm.  I take letrozole and function well on it.  I also do not obsess about the what-ifs down the road. I refuse to be covered in ANTS, automatic negative thinking.

I am amazed at well I feel now and how healthy that I appear to be.  My MO tells me that I have an 80 percent change of non-recurrence which are wonderful odds.

I have discomfort from my surgical site whenever I lie down to sleep, but it is manageable.  My MO told me today that it is simply nerve and muscle damage.  I suppose every day will bring reminders of this disease.  Still, I am happy that I did the treatments and I am grateful to be alive. 

debiann, children are the greatest.  I know.  I used to be a fifth grade teacher many years ago. Consider them angels that you need in your life right now.

When I was first diagnosed as her2-my BS said to me-"this changes everything, we now have to treat this as a whole body disease...you are going straight to chemo".  I think that is what you are saying too-SpecialK-that chemo is more for those stray cells, and to shrink tumors, but possibly not remove them.  MY BS also told me that my non her2 breast may not respond as well to chemo as the her2 breast-and she was right....that tumor shrank less than any.

lago - my MO also said she prefers femara to arimidex -didn't ask why, I was so tired of all the medical speak at that point!

I was 57 when Dxd. I was 3 years past menopause. I got anastrozole. (Arimidex)

So many posts I can't keep up... And my cat did not puke today!

So I decided to just post this to all of you going through chemo.  My final chemo was 2/26/13 and final Herceptin was 12/9/13.  So today, 6/5/14, I can tell you I feel like a million bucks.  I had to run all over our campus for meetings and I just couldn't believe how much I felt like my pre-diagnosis self!  I have strong legs again, I can stand up from a chair without using my arms to help.  My feet tingle and burn here and there, but I can keep that from happening by wearing good shoes, taking my B vitamins, drinking lots of water, being patient and getting enough sleep.  I have hair and nails and I can breathe without feeling wheezy or short of breath.  I'm flexible again (as much as I ever was, which wasn't much) can sit with my right leg tucked under my left butt cheek, which I've done all my life except the past year and a half when I just couldn't bend my knee that much.

I feel happy and hopeful.  Food tastes good and I sleep well.  I still sleep too much when I get the chance, but heck, I've always been like that.  My skin on my left boob looks normal after 35 cycles of radiation (I had one very tan, brown boob last summer which sat next to a big pale white one).  I'm no longer crippled from the AI and besides a few recent hot flashes and some mild anxiety here and there, I don't even know I'm on it.  Hopefully my bones don't either.  

And yes, chemo came close to killing me.  There's something in that sweet little mix of taxotere and carboplatin that knocked me on my butt and put me in the hospital bubble ward for 5 days.  I wasn't even allowed to have flowers in my room or wander down to the gift shop.  I never told anyone but my nurses this, but I had tarry black stools during my stay, which is a sign of bleeding in the upper GI tract and can be very serious.  I think it was a tear somewhere from all my vomiting.  I needed at least 2 units of packed red blood cells during taxol, but my NP could only get reimbursement for 1.  At a hemoglobin of 6 I wasn't low enough for 2 (huh?). I was gasping for air just walking through the parking lot at Meijer.  I couldn't stop pooping, couldn't control when it would come on and had to wear diapers during dog walks and work days. My washing machine and rug scrubber got quite a work out.  (I actually killed the washing machine, it had had enough).  I had hemorrhoids that made me cry.  I couldn't sit in meetings, had to get up and pace on my  wussy legs.   I went from a left ventricular ejection fraction of >70 to <55%.  I was one sick, tired, old, haggard, bald, sore, toe-nailess puppy.

So keep going!  It really is a blip and then slowly (way too slowly for my taste) it all starts to come back.  Many, many prayers and much understanding from Pbrain!

football - because you had all those nodes removed, if you had not done the ALND then rads would have been recommended. I know there are those that do both, but I think that number is diminishing and now it seems to be an either/or situation.

Pbrain, is your ejection fraction going back up? How bad is radiation? I'm having a hard time committing to it, thinking of umx instead, but then wonder if I'll regret that down the road. My current train of thought is that the purpose of chemo is to save my life, I have to do that. But the purpose of rads is to save my left boob, so by removing it I could avoid exposing myself to more se's. I'm sooooo tired of decisions. 

My bs said I don't need rads if I do umx. I already had lump with no node involvement, but the margins were close so she wants to clean things up. I don't think she's planning on taking anymore nodes. Of course I'm getting used to all these wonderful surprises, so I guess someone could think I still need rads.

Amazing thread- amazing amount of info!

Debiann-  A UMX will give you side effects, lasting ones, especially if you choose reconstruction.My chest/arm area will never feel the same. My range of motion is getting better through yoga but still a little limited. (w/0 recon probably easier). However, I didn't have the choice of a lumpectomy because of multifocal- also had a spot of DCIS.

I had rads --supraclavicular, chest wall, scar, drain site - not full armpit as I had had ALND and they didn't find anything additional).  My rads was due to nodes, LVI. , Because I had UMX they used the bolus on me every day in order to try to give my upper tissue an intense burn (which I fought with my calendula cream). Anyway, the last week I finally got a pretty ugly burn.  Now a year out, my radiated skin looks like all my other skin and it's not sensitive like it once was.  Rads was hard for me psychologically I think because I had put all my energy into getting through chemo in as positive a way possible and I was just not up for "waiting for the burn" of rads. But physically, rads and the recovery from it was not all that bad.

Rozem, I don't see my MO till July. I'm 49 (dx at 47) and haven't had a period in a year and half and estriol levels are extremely low- below 5%. She had me start with tamox because she was afraid my period would come back. She didn't think there was a need to take the Lupron shots and take AI. I'm wondering now what she will think. Does this mean tamoxifen is a bad choice? Should I be worried as these are my vulnerable years - I'm just a few months out of finishing Herceptin- 1.75 years from dx? 

Footballnut- you are rocking chemo! Keep up the great spirits! I know there are down days but isn't it awesome what you can do!

Lago, I actually find the idea of bc as chronic as oddly comforting-- I think of a chronic disease as one that you can LIVE with, like lupus or MS, or heart disease or diabetes.  I like to think it's a condition that I hate but that I can manage.I also think that in the future they will be able to do tumor analysis that will more accurately predict recurrence- so perhaps they really will know when some people are cured. 

PBrain- you went through the wringer. So inspiring how you didn't give up and that you've recovered so well. 

I also wanted to mention I have three old friends who were triple positive. They all were premenopausal. Two got Herceptin right when it came out. One is eleven years out (1b), one is ten years out (3A- BRAC+)), and one is six years out (2A). And they are all doing great. 

Thanks momwriter for telling me about the se's of umx. If I go this route I'm not doing recon, at least not right away. When I was discussing options with the ps he asked me what my goal was. I said I want to do the thing that's the easiest with the least se. now if I could just figure out what that is.

I too am doing rads on both breasts-including my masectomy left breast.  My BS also originally told me I would not have to have rads if I had a masectomy.  However, that changed as I was multi tumored in that breast and now they are saying one of the six tumors was also close to my chest wall.  So a masectomy does not always guarantee no rads.  And my BS was actually trying to use no rads as incenitive to have a double masectomy...so I am glad I did not listen to her with that just in mind.  I would have been pretty upset.

momwriter I was 49 at diagnosis/perimenopausal. Last cycle 2 weeks before chemo. My onc felt I was so close to menopause (also bases on my mom and sister) that it would not come back. She started me with Anastrozole and tested my estiol levels for 5 months to be sure (while I started Anastrozole). My on never liked Tamoxifen and now with the latest info from last weekends oncology meeting it is supported that the AIs are more effective and luprin/AI might be an option in some cases for premenopausal women. But my onc definitely has a bias against Tamoxifen which  IMO might be a bit unfair. At one time there were no AIs. All women got Tamoxifen and did very well on it. That's why they still use it today. It's a good medication and lots of women are on it with great outcomes

Debiann I ended up doing the BMX because they found a small amount of LCIS in the other breast so it was recommended. Do I feel different, well yes but I don't really remember what I felt before because this seems normal to me. My main issues are from the lymph node surgery. My range is not the same but not bad and a little stiff when I raise my arms high. As far as the implants, well my PS doesn't want me to do exercises the focus on only on the pecs but that's about it. Also remember you will lose sensation in that area. I have some skin sensation but there is a dead spot but it doesn't bother me. I'm glad I did it.  Reduces my chance of a new breast cancer to 1%. I had very dense tissue. Also if I kept the other breast and just removed the LCIS I do believe I would have had to do rads. I got a pass on rads even though I was in a grey area. So far I'm fine.

as far as recon goes. Not everyone has problems and takes the scenic route. But we don't know that until we go through it. I had BMX with TE's, fills then permanent saline implants back in 2000. The first couple weeks were rough with pain, but after that it was not so bad. I never had any healing issues or infections. After the permanent implants and the tattoes I never saw a PS for almost 9 years when I decided to exchange for silicone gummies.  Yes, you have a loss of sensation, and they will never look or fell like real ones, and it did take a while to get my range of motion and strength back, but I never regretted my decision. In my naïveté ,and because I was never told otherwise, I did all kinds of excercises and jobs I probably should not have. It's a wonder I didn't get LE along the way!

BTW...

ICYMI from ASCO Vitamin D is not tied to breast cancer outcomes. We've discussed this many times here.

http://www.medpagetoday.com/HematologyOncology/BreastCancer/46116?utm_source=cardio-meetings&utm_medium=email&utm_content=mpt&utm_campaign=DCH