TRIPLE POSITIVE GROUP

KimCee

welcome LaughingGull. Sorry you must join us, but this is a wonderful group of helpful and knowledgeable women. I am not sure why the MO said that. Both courses of treatment are the standard. I know the weekly Taxol is a bit easier on some. Maybe he felt you were being aggressively treated. My oncologist gave me the choice. I only chose weekly Taxol due to the fact that I have to work full time. The other choice was TCH.

And btw, I think we are all train wrecks at various times. Sending you hugs.

ElaineTherese

Hi Laughing Gull!

Yes, most +++ breast cancer patients who are Stage II and beyond choose from AC + Taxol + Herceptin + Perjeta OR Taxotere + Carboplatin + Herceptin + Perjeta. I don't know if your regimen is much different from the first one because you're not getting the Carboplatin. Taxol is supposed to be gentler than Taxotere, but it is associated with peripheral neuropathy (which affected me slightly). Both Taxol and Taxotere can cause gastrointestinal issues (e.g. diarrhea), and both are associated with fatigue. A very very very small number of women who have done Taxotere have suffered from permanent hair loss, so there's that.

I don't know if there are comparative effectiveness studies available because as far as I'm aware, AC + Taxotere + H + P isn't that common. However, my regimen did wipe out all of the active cancer in my breast and compromised node. Good luck!

kae_md99

hi all,

ihave been on zoladex since august. my hot flushes for the past couple of days are so bad that sometimes i feel like fainting. has anyone experience that?i heard some antidepressant help with the hot flush.. i am already on antidepressant (Remerron) and about to start Arimidex ... thanks

ElaineTherese

Hi Kae!

I'm also on Zoladex, but I've never had hot flashes that bad. The number of night sweats has increased since I started in February of 2015. I know that some women take the antidepressant Effexor to address their hot flashes. I'm on Celexa, but mostly to address the mood swings that surfaced a few weeks after I started Aromasin. I don't think Celexa has had much of an impact on the flashes. Good luck!

kae_md99

thanks Elaine. will ask about Effexor...

coachvicky

Red, Look under "breast reconstruction" on this site and you should find a subject on TDAP. Forgot to answer your question, I had no markers and did genetic testing. I am 64 ... I really didn't need my girl parts. Also, some women have vaginal bleeding on Arimidex. Was not going to let that happen. I wrote previously that I am too old to shop the tampax aisle at the grocery store.

HapB, post ... ancient!

LaughingGull, welcome. Keep us posted on your progress. Please watch that "shock" feeling and if you need to take something, do so. The train wreck will get back on track and moving forward. Like Kim wrote, these are normal feelings / reactions. This will be in your rear view mirror one day. What helped me was to keep a journal. I wrote on good days and not-so-good days. I also found guidance in a small book by John Piper, "Don't Waste Your Cancer."

Vicky

LaughingGull

Hi ladies,

Thanks Elainethere and Vickycoach for the greetings. And for the book recco. I will try to keep breathing. All in all my second opinion visit yesterday was a complete waste of time. Doctor was 2+ hours late (no apology), nobody had prepared or read my records and they lost the CDs with my scans; "call next week in case when so and so comes back from vacation she can find them". Dr lazily confirmed general approach, based on what I told him rather than what he knew about my cancer cause as I said he couldnt be bothered preparing for the appointment. Then he threw out there that he would have done Taxol rather than Taxotere but it was not clear to me why. Is this normal for second opinions? I am under the impression that since I was not headed for treatment there they could not care less.vin

Need to ask my oncologist about the carboplatin. I thought carboplatin was in my plan for the second round bc I received a letter from my insurance approving it but then I only got Herceptin + Perjeta + Taxotere. Hope it works.

LaughingGull

ohioproud

Hello all,

I just finished rads and have been using pure aloe that my husband harvests from plants. It's been working pretty well though we'll see, as the SE continue for a few weeks. I am grateful to be alive but very unsure how to proceed. Will be on Arimidex starting in March. Mega anxiety about SE's and about triple positive though extremely grateful for all the targeted drug therapies.

Hugs to everyone today

GodsWithMe

Red & Melanie, thanks so much for your kind words and advise.... I am writing everything down to discuss with nurses & doctors on Thursday.

Hi LaughingGull! Welcome... I'm new on here too. So sorry about your 2nd opinion visit... what a horrible experience! Apparently this doc forgot how to show compassion. Take one day at a time and try (it's hard!) to focus on every little positive thing you can each day. I'm about to start Herceptin + Taxol this Thursday, so we can walk this chemo journey together. If you haven't heard of this movie already you should watch it: Living Proof with Harry Connick Jr. It's all about HER2 & the doctor who invented Herceptin. Great movie.

Have a great day to all!

Laurie

ohioproud

Godswithme,

Weekly Taxol was very doable. Iced my hands and feet throughout and no neuropathy! I am a runner and ran about twice a week during chemo. Kept up with strength training and walked at least 2 miles a day. I believe this really helped minimize SE’s though I did have some pretty sickly days. My biggest complaint was indigestion.

I also kept about 75% of my hair and now the bald patches are growing in. I am grateful.

Best,

Marci

kae_md99

can someone recommend something for vaginal dryness? thanks

PoseyGirl

I second Kae’s question. I know there is a thread on this site about sexuality, but many of the things listed don’t make much difference. Is there the top of the top for lubes?

Vicky, so glad you had a great meeting. I was pretty sure you had done everything you could, but it’s great to know that another specialist agrees.

We should have Perjeta in Canada for earlier stages - not good.

Welcome, new ladies. I still dance with anxiety and some grief and shock and startle easily. But yes, many days I do achieve a feeling of balance and normalcy (1 year, 7 months after dx). There is no standard timeline, but it’s sooo helpful to have others show us and assure us.

coachvicky

Thanks PosseyGirl!

To you and Kae,

My Gyn recommended and my MO approved DHEA 6.5mg/ml vaginal cream. It has to be compounded.

Vicky

kae_md99

coach vicky,

did you ask about nerlynx on your appointmentwith Special K’s MO?

coachvicky

Kae,

I did not ask. It really won't improve my odds. My non recurrence is 94.6. I am lucky.

Vicky

kae_md99

coach,

how did you come up with your non recurrence figures

Tresjoli2

Special k you made me feel brave. I have three pictures to share. The first is at the end of chemo just before I shaved my scraggly head, the second is one year out, and the last pic is from last week.

Blownaway

FINALLY - I see that someone has hot flashes like mine. It isn't just a hot, sweaty feeling. I also get out of breath, my heart pounds and I feel weak and dizzy. Sometimes close to fainting. I have to elevate my lower body and get my head lower than my heart. I know what's happening but it scares the s;:&$t out of anyone around me

SpecialK

tres - oh yay! Look at you! You look pretty good in that end of chemo shot girl! Your hair looks great and so does your skin, you look healthy and happy - awesome! Love it!

Laughinggull - here is my take on the chemo regimens you have discussed. Generally, chemo for stages II and III Her2+ is either AC-TH(P)(adriamycin, cytoxan, taxol) with Herceptin/Perjeta given with the taxane - or - TCH(P) (taxotere, carboplatin) with Herceptin and Perjeta. Not all stage II/III get Perjeta, it is dependent on where they live in the world, and their individual clinical criteria. For stage I folks and some stage IIa, TH (taxol, Herceptin) is available as an option. The TAC (taxotere, adriamycin, cytoxan) regimen is not used nearly as frequently. I can probably count on one hand the number of people here on BCO I have seen use it. I assume the H and P would be given with the taxotere, and the AC done dose dense first since H/P aren’t given with the AC portion. Combining adriamycin and taxotere in the same regimen is using two very big guns, taxotere is more potent than taxol, this would be why the other oncologist mentioned using taxol instead as it is more the norm. In your shoes, I would ask your initial MO the rationale for using these two strong agents for your individual case.

Tresjoli2

thanks special k! The steroids bloated me and did a number on my skin. Took a long time to recover, and I am just now starting to feel like my old self. So for you ladies that are in the thick of it, it does get better again! Way better

PeachyJeanne

Laughing Gull My chemo regimen is not the norm, but I started out with dose dense AC / Taxol. That's when they thought I was HER2 Negative. After surgery it was revealed I am actually HER2+ so I am just starting Herceptin/Perjeta this week. I will have CMF chemo combined with Herceptin/Perjeta for 4 cycles and then will finish out the year with just the Herceptin/Perjeta.

Sorry about your experience with the second opinion. Amazing how 'professionals' can be so insensitive. "come back and maybe we can find your CDs?" really? Ugh.

SpecialK and Vicky Thanks for all of your great information. How wonderful for you two to meet and for Vicky to get peace of mind at her second opinion. It's good to know we have a great support system here.

Tresjoli2...Lookin' good!!

Blownaway My hot flashes are more frequent and definitely causing me to flip the covers on and off all night but nowhere near fainting. I be that's scary.

Blownaway

HapB - It never occurred to me to take my b/p during a hot flash. Guess I could try it

coachvicky

Hap ... it is the percent of the cancer not returning if I complete ALL treatments (chemo and 5 year estrogen blocker).

Vicky

moodyblues

Tres.  Looking good girl!

coachvicky

Hap ... it is from my Mammaprint results.

Yes, it is great and I feel fortunate.

Vicky

coachvicky

I did not know that, Hap.

My MO did the test but only because DH and I insisted.

I had different cancers in each breast (non invasion DCIS, invasive DCIS, and lobular. Both were ER and PR positive. One breast tested HER2 negative and the other HER2 positive.

Vicky

SpecialK

hap - they generally don’t do a Mammaprint for triple positives because anyone with an invasive component of 5mm or greater will be recommended to have chemo and targeted therapy. The usual purpose of the test is for determining whether chemo is warranted, so from that perspective most oncologists won’t order it since the recommendation is already a given, and often insurance won’t pay for genomic testing when the standard of care from the clinical criteria is already going to include chemo. However, the Mammaprint test is able to be done - unlike OncotypeDx which is not designed for Her2+ patients -and the test can yield important information for the individual, as coach shows. I had Mammaprint one of my biopsy cores way back in 2010 because my surgeon was participating in a trial with Agendia, the lab that does Mammaprint.

kae_md99

Blownaway,

my psychiatrist gave me Celexa for the hot flushes. it is scary! i’ll see if its effective. she has one breast cancer patient whose response was great....

Binniebin

Hi girls, haven't posted or even read for a while. So quite a catch up. But good that you all seem to be doing ok, and very interesting discussions going on

Kim cee, I was interested that you have you're herceptin over 60 minutes. Here we do 90, though the manufactures recommend 60 second dose and 30 for subsequent if no reactions occur. Why do you have yours at 60?

My heart function dropped a little from AC ( I have pre-existing cardiac issues stemming from childhood) so herceptin start delayed a week and tamoxifen delayed by a month. Unfortunately my bone density shows severe osteoporosis in spine so arimadex is out for now at least.

moodyblues

SpecialK,  Are you saying that a mammaprint can be done for us even now?  Do you suggest that we ask for one?  Predict (UK) shows me at 94% five year overall survival rate, I think that's pretty good.  It shows 86% ten year overall survival rate.

Vicky,  Was your Mammaprint results similar to the Predict (UK) results?  Just curious.

Thanks Ladies!