TRIPLE POSITIVE GROUP

thanks Coach Vicky, I had no problems getting Armidex name brand filled yesterday ... I die notice cash price was $2,634 for a 30 day supply, I paid $0.00 as I meet my high deductible already. Once I reach my deductible, everything is paid 100% on my Aetna Plan... Onc told me start on June 15th, since I stopped Exemestane on the 1st. My debilitating bone and joint pain continue, it has not lessened since stopping, on a side note, my hot flashes has increased ... I am not normal, LOL...

I would like to know what everyone, if needed, is taking for insomnia? I am handling letrozole pretty well, the trigger thumbs have resolved, hot flashes diminished, energy level is good except for lack of sleep. I just really need to sleep.

annie - have you tried melatonin? My BS really encouraged it because many breast cancer patients have a lower than average level. There is some indication that it is helpful from both the sleep front and the cancer front. It is a good idea to titrate up from a lower dose up to 10mg (his recommendation) if you tolerate it, but it can cause some vivid dreams if you start too high. I can’t personally testify as I have not tried it. I do have sleep issues that pre-date breast cancer, but haven’t taken anything to help with it. I am a person who doesn’t require a lot of sleep to function decently, while also knowIng that sleep is important and restorative - it’s an area I need to work on, lol! Here is a link. It also goes without saying that sleep hygiene is important - dark cool room, no tv or phone, etc. - I also need to work on that..

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5503661/

Hi all,

I am new to this Board and hoping to benefit from your wisdom if any of you have had a similar experience or may have seen any research, etc. I was diagnosed in November with a large, grade 3 HR+, Her2- (IHC equivocal, FISH-) tumor with at least one malignant node. I jumped right into neoadjuvant chemo (AC-T) plus a clinical trial immunotherapy drug plus placebo. I had a partial response to chemo before a double mastectomy and implant reconstruction two weeks ago. The pathology came back as expected-a smaller, but still there tumor and a single malignant node. Once again, the Her2 was equivocal and sent for a FISH test but my oncologist assured me that it would be very unusual for it to test positive after testing negative.

You can probably guess the next part: the Her2 came back positive but low. I am slated to talk with my MO Wednesday about next steps, but her initial guidance was to do another (milder) course of chemo and begin a year of Herceptin and possibly Perjeta. I am ready to do whatever is most likely to get rid of this nasty beast, but wondering what questions or concerns I should raise with her? I still have my port and I was fortunate to have few side effects from the first go at chemo outside of hair loss and mild neuropathy which has resolved.

Thank you all!!!

I take Melatonin for sleep issues. The chewable are fantastic to keep by your bed in case you wake up in the middle of the night and need to take some - no need for water. Don't take too much as it can cause insomnia if it is taken at too high of doses

Hi there! I have not posted anything here but have been closely following since I started chemo in March. Happy to say I’m done!! 4 x TCH with Herceptin to follow for the remaining year.

My last round was on June 2 and just wondering what everyone who has finished has their recovery been like. I know we are all snowflakes & no 2 are the same but curious as to what recovery was like. I am currently experiencing the thigh and upper arm muscle weakness which makes simple tasks feel like an Olympic sport... I also gained 20lbs. No idea how that happened but according to the scale & jeans it did. Think that a lot of that 20lbs is fluid retention as I seem to bloat up as the day goes on. I have been trying to be more mobile & active but these lead legs makes it hard. I have also just started on a b-complex supplement.

Also any ideas on what to expect with Herceptin alone. Hoping it’s a lot more friendlier than chemo was!

Thanks everyone so much and hoping everyone is doing as well as can be on this crazy ride

@Dup403 - I did 6 rounds of TCHP and 1 round (so far) of HP. I'm 1 month post chemo.

Most of my (presumably) Chemo related issues have cleared up including, nose bleeds, fatigue and minor neuropathy in the feet. My blood counts this week were almost back to normal.

The only issues I still have are, some muscle soreness in my thighs (feel like I've done 1000 squats) the occasional odd taste (it's 80% back) and, a minor version of that tongue/mouth issue (I had all Chemo) which I hope is just residual and, will be gone for good by my next HP dose.

I don't know if it's because I didn't get steroids (other than treatment day) but, i ended up losing 21 lbs during Chemo and gained 5 of it back in the last month 😌.

I go for my BMX tomorrow, hoping I get the all clear on pathology and sentinel nodes but, I'm preparing for bad news to be safe (easier not to get my hopes up).

Morrigan 2575 1000 squats sounds about right. I did take steroids, day before, day of and day after treatment which I think is where this weight has come from. I can work on losing the weight but I need my legs to do this and that’s my biggest issue right now.

I hope everything goes well for you tomorrow and am sending good thoughts your way

Morrigan — will be in your pocket tomorrow with prayers all goes uneventfully with a speedy recovery. I’m doing Taxol with Herceptin but did have one solo H so I could distinguish which SEs Came from which med.

Herceptin— the real thing, not a biosimiliar, very little SE. indigestion not a problem when prescribed one daily omeprazole DR 40 mg capsule dry/runny nose. Using a nasal saline spray and saline gel/rose infused vaseline and Claritin. First echo after initial Herceptin infusion all heart function ok; will retest in a couple weeks.

Biosimiliar Kanjinti has many significant SEs — only had one infusion of it then switched to the real Herceptin.

Prayers for tomorrow’s surgery.

🌈

j

Triple Negative is the very aggressive, very bad one. Triple Positive is more aggressive than HR+ (ER/PR+) cancer, it also has a tendency to spread which is why you almost always (always?) need Chemo. However, it's not as aggressive as TNBC.

HP does level the playing field bringing survival rates to just slightly lower than HR+ BC. There's also other targeted drugs available for HER2+ (including Triple+) BC (TDM-1/Kadcyla and Nerlynx) both are approved for early stage BC.

If HER2+ comes back it's most likely to dominos in 2 years and, if it does, it's more likely to be metastatic. However, Herceptin, Perjeta, Kadcyla and Nerlynx all lower the recurrence risks

Do your own research and, be your own advocate. I like my MO but, I would go in with a notebook of questions every week. Stuff I read on the Internet, stuff I found here are BCO, stuff mentioned by other cancer patients.

Dup403--just my $0.02 on Herceptin only. Yes, it's not a chemo drug, so not many SEs but I can't say none. I had really upped my protein intake through chemo and then cut back when I was finished. I started to notice that I felt kind of funny coming out of Herceptin--almost a little drunk. I started making a point to eat meat the two nights before treatment and it helped a lot. And yeah--a runny nose for that whole year, and for a few months afterwards, but that's not a big deal. Hang in there. Schedule something super fun for yourself when you're finally finished.

morrigan,

I'm so glad to hear that 90% of your cancer was gone! It's good to know that chemo did *something.* You probably have already checked the Kadcyla thread; I'm sure that's a good source of info about residual disease.

bliss - hi! I don't recall seeing Andi67 post on this thread, at least not recently - when I checked her profile it looks like she is PR-, but did see that she posts on the stage IV Herceptin/Perjeta thread and last posted late April. Maybe someone over there has had PM contact with her?

Has anyone had experience with high numbers in a tumor marker blood test?Mine was high and now scans are being ordered. I am very scared.