TRIPLE POSITIVE GROUP

CONGRATS Willa, so glad to hear the good news.

Ingerp, I felt so much better after I stopped taking arimidex. One of the first things I noticed was that I could kneel on the floor (as in changing cat litter, wiping things off the floor). My knees didn't hurt! I also think I had quite a bit of neuropathy in my feet--mainly my feet would hurt and kind of have hot spots and I wouldn't feel steady at times. That is gone. The biggest change is how much, much better I feel mentally and emotionally. I had quite a lot of anxiety, and I was on meds for that, but I still felt anxious and also depressed. I also lost about 45 lbs--a bit of that has come back but that ok because I don't have the facial wrinkles I had when my weight was lower. So it does get better and I just want to say to those of you who feel like you are just slogging through, I felt that way too. It does get better and I know you can do it. Much love to you all.

Hello my friends, Angels Gal here,

Sorry I haven't posted lately. I have been connected, reading the posts that come in. With working a full time (40 hrs) and the fatigue that comes with AI's I enjoy coming home and taking a long nap every day.

Today is a big day for me. My 4 month check up with Oncologist. We shall see if I continue to be the healthy girl my Dr said I was back in September where my numbers were very good. I know that the first 5 years are the most critical for us Her2 triple positive gals so I will be ticking off in March 2020 the beginning of year 3 since Diagnosis and chemo began.

This is such an amazingly supportive place. I love the virtual hugs and affirming words even when times are confusing and tough.

A very merry Christmas to all, and may we have a blessed New Year too!

AngelsGal

I received my first Christmas gift yesterday. 4 month check up report is I am in full remission. There is no indication of disease any where in my body. Numbers and cancer marker test are all at normal levels! I can now move forward without the dark clouds of doubt shadowing everything I do. I know there is always the possibility that it will return Her2+++ is just like that. Yet for now, this moment I am rejoicing and enjoying the moments. Merry Christmas everyone, do not loose heart or be discouraged. Hope is a powerful thing! Love and prayers, Angelsgal

rlmessy,

Glad to hear your surgery went well. Yeah, those drains are a pain! I had a lumpectomy and ALND, and had one drain. But, it took me forever to get rid of my drain because I didn't rest enough so take it easy.

Congrats on the clear SN! That means no ALND for you and a smaller chance of lymphadema. Here's hoping you have an easy recovery.

rlmessy - Does that mean you have residual tumor from the surgery?

rlmessy - I assume you will be getting TCHP and tamoxifen/AIs,which should treat anything that has moved via the lymphovascular systems. That is the whole point of systemic treatments like chemo and hormone suppression.

Rlmessy- You should be offered plenty of systemic treatment that is likely to take care of any stray cells, like Hapa mentioned. Unfortunately there are currently no blood tests or imaging that can determine whether microscopic cancer cells are circulating or hiding elsewhere in the body. Luckily the systemic treatments are extremely effective and although none of us has any guarantee, Stage 1b has a very good prognosis. Also Triple positive can be treated with targeted therapy (Herceptin and/or perjeta), chemotherapy and hormonal therapy- it’s quite the arsenal. I hope you’re healing well. Hugs to you, we’re right here with you

Hello friends! I’m currently on a Kadcyla regimen & have a serious (and seriously annoying) cough. Dry, unproductive hacking. It goes away when I lie down to sleep. Can’t seem to get my MO on the phone to ask what I should take to calm it. Anyone have any advice/experience

Hello Paloma - could be allergic cough? might want to try OTC antihistamine like cetirizine, it doesn't interact with kadcyla and doesn't impact liver function but make sure to confer with your MO; also, cough seems to occur as a side-effect of kadcyla like (18%) - today I'm having my long delayed and now dose adjusted 2nd kadcyla dose - hopefully my liver stays calm on the lowered dose

Does anyone have joint pains after chemo? - have recently noticed that when in a prolonged position like I was sitting on the floor wrapping presents, moving from that to get up was just a slow achy thing, caught me by surprise as my last TCHP was 09/13 and I'm not on the tamoxifen yet

Paloma..a couple of things to try...hot shower, menthol cough drops, tea with honey or some pineapple juice solo. Those are my go to remedies for a dry cough.

FNPMom, just curious if you had some joint pain before your diagnosis? I had problematic knees before and during chemo it seemed like all my achy joints were completely healed. After chemo, it magically reappeared. My OC said that the chemo attacks everything including inflammation in your body so actually helps with aches and pains. Not sure if others have head this but I found it interesting.

Hi guys - no achy joints prior other than my left hip hurting when running, which made me switch to cycling - have not cycled since the diagnosis (afraid of falling and breaking something, delaying plan of care - just power walking for now) it feels like my joints get stuck and achy - I feel it even in my hands - avoiding NSAIDs because of my liver so, I've been using peppermint oil and it helps

I got done with the 2nd Kadcyla dose yesterday; this time, I felt so cold after - loaded up on warm drinks and a dedicated portable heater - felt tired but woke up today feeling normal - lab check on 01/10/19 - my fingers are crossed that liver enzymes stays stable - my onc can lower it further from 3.0 to 2.4, but after that he'd have to herceptin/perjeta me - I really want this drug though - my HER2 was in the DCIS and I think that was the remaining 11 mm (they no longer did prognostics after neoadjuvant and I agreed since it wouldn't change plan of care)

On another topic - the things we tell each other lol - but as I was wiping after voiding this morning there was a trace of blood on the tissue. I'm not on tamoxifen yet (waiting to get stable on my kadcyla dose) - I think my ovaries are turning back on, I have 2 daughters and they're on their cycles this week - I'll have to talk to my onc - anyone contemplating doing complete hyst with bilateral ovaries/fallopian tubes being removed too?

FNPMom - my ovaries turned back about 1 year after my last chemo and my period returned - luckily I was due to see my onc a couple weeks later so when I mentioned it to her she had me start zoladex injections to shut my ovaries back down (plus I was on tamoxifen for 10 months already) - at this point she thought removing my ovaries was not necessary as it’s a big decision and permanent unless I felt I’d rather do that - at this moment, for me, I don’t feel like having another surgery if I don’t have to so I’ll do the injections for now - I hate having to make these decisions - I never know if I’m making the right one lo

I am reading more and more TPBC women are getting Kadcyla and not Herceptin and Perjecta regimen ...I thought Kadcyla was only after H&P and residual disease? But reading some are getting Kadcyla right after Chemo.

Those of you on Kadcyla, what side effects do you have?

I have had 4 rounds of just H&P with ever side effect of both medicines except diarrhea, I am severely constipated instead.

I may ask to either drop Perjeta or switch to Kadcyla. TIA.