TRIPLE POSITIVE GROUP

How long post-chemo did you continue taking the glutamine and other supplements to ward off peripheral neuropathy? I had stopped taking my supplements at about 2 weeks after my last dose of taxol but found the tingling resumed so I bought another container of the powder. I'm now 5 weeks post chemo but actually having side effects flare up that I never had during, including itchy eyes and mouth sores. I'm a little wary of what else might come up.

This might be good news for those who are receiving (or did receive) Herceptin on a weekly basis: 

Weekly Paclitaxel/Carboplatin/Trastuzumab Therapy Improves Pathologic Complete Remission in Aggressive HER2-Positive Breast Cancers, Especially in Luminal-B Subtype, Compared With a Once-Every-3-Weeks Schedule

http://theoncologist.alphamedpress.org/content/18/5/511

My left side has typically been my problem side and it was my cancer side.  

ChickaD, chiming in to say, I had mouth sores and diarrhea after round 1 of chemo, and then neither were a problem after that!  I even innocently thought to keep a calendar of how I felt the first few weeks, expecting that I could plan to make the best out of good days, because wouldn't each round be the same? NO.. it was everchanging! But that's all I really remember, I was on a lot of benadryl and steroids to counter allergic reactions. Ha! Wishing you well!

Pbrain, awwww... hope you feel better soon too.

I will have my last round of herceptin in two weeks. I'm considering skipping it. The last two months I've been going downhill, now with strange immobilizing exhaustion here and there, stinging skin, achey joints, burning feet (didn't have that through chemo), tummy upset, and cranky as all get out, anxiety, etc etc etc. PLUS in the last month my hair stopped growing back!! I shaved my legs a month ago, and nothing since. (Hair on head has grown so slow, it's ridiculous, but at least it looks like I meant to have this pixie cut look.)  

So, my onc says to all of this, "well, I guess we'd better see you in a month and see how things are going." Really? I'm crashing here!  My inspirehealth doc says, "Sounds like your mitachondria need help. They are the cells that affect fast growing cells - which could explain every one of your symptoms. Likely due to herceptin/tamoxifen mix."  I love that doctor. So, am on mega supplements to help. But really feeling like my body is saying, 'enough.'  Anyone else have this sort of thing going on?

Gotta tell ya, I want you all to be happy and healthy and well, but there was something oddly comforting to be able to come here and see people saying what's really bothering them. We don't get to do that a lot in the other parts of our lives.  Etheric hugs to all!

ChickaD - If you still have the mouth sores, ask your MO to prescribe Majic mouthwash. I had a really large sore after tx1 and it cleared it up pretty quick. My MO also told me to use it proactively a couple times a day for the first week after each tx. For me it did the trick and I never had another mouth sore.

Camille - vent all you want girl. That's what we are hear for.

Marlene - at 5 weeks PFC I still felt pretty crappy too. It really wasn't until about 8 weeks PFC that I felt like most of the SE's were gone. It's hard to be patient to feel better because we are done with chemo and just want to feel better. Unfortunatley it takes a while for chemo to be done with us.

FeelingtheMagic "stinging skin, achey joints, burning feet (didn't have that through chemo), tummy upset, and cranky as all get out, anxiety" sound more like Tamoxifen than Herceptin especially since you didn't have this the first 6 Herceptin treatments.

LeeA about the frequency of Chemo and/or Herceptin. I have read over the years that some say every 2 weeks is better for chemo, every week for Herceptin. But if you notice at the end of the link you posted it does say "more study needed." While I agree it would make sense the constant stream of drug in your system may be better it might not be significantly better.

For many patience they can't possible travel every week for treatment. Also for some busy treatment centers, they wouldn't be able to see as many patients. That could me turning away some or more mistakes. We know how over worked our chemo nurses are. So if that difference isn't that significant I doubt they will change.

 ♥ ♥ ♥ camillegal ♥ ♥ ♥

Marlene At 5 PFC weeks I just started to feel better. I never stopped taking Acetyl-L-Carnitine. I still take it because it's a memory booster. But I do still have the numb heel… which has been bugging me because it gets worse in the rain. Looks like, or should I say feels like rain all week.

marlene - wanted to add that I took L-glutamine in combinatin with acetyl l-carnitine and B6 - I have continued taking the B6 and acetyl l-carnitine for the reasons lago mentioned above - I figure my neural pathways need all the help they can get, I just did not continue with the l-glutamine.  I am considering going back to it though because I am having a hard time building muscle even though I am working out. It is predominantly used by bodybuilders so I may try it and see if there is any improvement.

(((((((camillegal)))))))

camillegal I think everyone is crabby today. I know I finally feel better because I just worked out. My friend is crabby that I'm meeting for lunch. My mom was crabby. I think it's the rain. But we all need hugs at times.

Oh it's good to hear of others crabby, cuz I'm usually not---but Lee never cry---as was said at this stage of the game  WE CAN NOT WASTE THE MOISTURE

AShla hahahahahahaha

Some really good news too late for us but with huge implications for all breast cancer patients and especially us Her2 pos gals. Maybe not enough to pull us out of our mental mucks but researchers treated a group of herPos estrogen and or progesterone positive ladies WITHOUT chemo and a certain percentage achieved pCR. They are trying to identify the subtypes!

http://www.onclive.com/publications/obtn/2013/May-2013/Neoadjuvant-Regimen-May-Not-Require-Chemotherapy-in-Some-HER2-Positive-Breast-Cancer-Patients

I had an appt with the RO first thing this morning, then onto the physical therapist after that. RO thinks I should consider rads due to the extranodal extension that was noted on my original path report from 9/13. But as with everything else about my case there are no studies or data that they can go by to give a clear picture about what the real possible benefit of rads would be. He did show me my PET scan from 10/13 that clearly showed at least 2 positive nodes had cancer. But the pathology from my ALND after chemo showed all 29 nodes to be clear. When I told him I was leaning towards not doing rads because I don't think the benefits out weigh the risks, he understood and said it was my call. In the end I feel very much at peace with not doing rads.

Next stop, PT. She worked on the tight muscles and the cording so tonight it is feeling a little sore. I  know in the end I will be glad I had the PT, but it sure isn't fun at the moment. She did say that the swelling she felt is post surgical and not LE swelling, so that was good to hear. I also got cleared to start using 1# weights! woohoo. I feel like such a wimp. I didn't even go buy weights, I figure I can use water bottles until I "graduate" up to 2#ers.

Suegr8 U are so right about the moon, u know I did forget about that. hen I worked e always kne hen the fool moon as there just by the ay people ere acting and we were alays right--That as so interesting to me, ho could I forget, cuz I used to read about that.

Marlene I so agree with Ashla hen a baby is laughing it just brightens up everyone in the room.

Bren hatever choice u make is the right one. So good for u. And PT is not so much fun but it helps.

Kayb.....I read that also tonight! I love that science daily. Downloaded the app. I could spend hours just clicking from topic to topic. So interesting.