TRIPLE POSITIVE GROUP

Friends, please take care of yourselves. If nothing else, the last couple of years has taught me how very precious life is

rjles I'm new here and reading to catch up. I'm similar to you — at Dx I'd already had a hysterectomy and was taking estriodol. Never had hot flashes, but the estriodol got rid of the awful night sweats. Of course they made me stop taking it and the extreme night sweats started again. MO said take Venlafaxine (generic for Effexor) — will fix them. I replied "lies and deception." But I did try and was shocked when the night sweats disappeared completely with 37.5 mg twice a day. I do not take anything extended release so it is just the regular pills.

I had to fight to get an estrogen level blood test ordered. Makes no sense to me; they want us to take hormone blocking medicine but don't monitor to see if the medicine is working.

Does anybody's MO test estrogen levels? Does anybody know what is considered a successful estrogen suppression level?

Re: Herceptin, first infusion usually 90 minutes but typically 30 minutes after that. Amount will always be the same when you're getting it weekly. You'll have height/weight measured and then they calculate dosage. When you move to Herceptin only ever three weeks it's triple the dose.

Re: testing estrogen levels, I've never read about that happening. The meds work.

Hello everyone,

I am a newly diagnosed and was told to look up this Triple Positive Group and that's me! I have already had a lumpectomy, lymph node removal, port placement, and had the first round of chemo (AC) two weeks ago (3/4/2020). I am due to have my second chemo infusion on this upcoming Wednesday. As a triple positive person, I honestly don't know all the exact details pertaining to the DX but I am currently trying to read up on as much articles as I can to be better informed. All of this has been a world wind and I'm simply just beginning to play catch up so to speak. The abundance of information can be overwhelming at times and googling is NOT always a good thing when reading statistics. So I basically KEEP my TRUST and FAITH in God, have been more aware about making lifestyle changes (diet & exercise), and remaining positive throughout this experience. I look forward to connecting with everyone and I hope that everyone have a nice day.

ByHisGraceTwice...my bad reaction was to a Taxol infusion that was received at the same time as Herceptin. Since then the Taxol has been discontinued and I only receive the Herceptin. I did continue premeds the first couple of times with Herceptin solo because I was scared but at my last infusion I did it with no pre meds and over 90 mins and did great.

Angel Eyez- AC with no Herceptin?? Are you sure you're HER2 positive, or did you forget to list Herceptin as part of your infusion plan?

I'm curious why some MOs would choose AC for triple positive instead of TCH, choosing NOT getting that start on Herceptin ASAP. Are there cases where AC is actually a preferred method? My understanding is clinical trials have shown TCH/P to be the most effective gold standard, but does that differ for some people getting adjuvant chemo?

Now that I look back, I DON'T see a clinical trial comparing the two regimens, so maybe my chemo brain made that info up! 😆 Or perhaps I'm just remembering my MO stating his preference for it, and forgetting his reasons why.

@Elaine Thanks for setting me straight!

I was given the plan AC + THP by my MO, went to another MO for a second opinion about that plan before starting, and the second MO agreed with the plan and told me that this plan was the standard of care for my diagnosis. The T in THP is Taxotere not Taxol.

My MO also preferred AC-TH/P over TCH/P. He thought the latter had more toxicity. I did have to have an Echo done to make sure my heart was good but he thought since I was young(er) and very healthy (minus the cancer), that I'd do well with this regimen. Thankfully I had very few side effects through it all. When I was diagnosed I'm pretty sure the AC-TH/P regimen was slightly better than TCH/P but I think it was only about a point or so.

My 3 month bloodwork/checkup/zoladex injection + 12 month DEXA was truncated to just a zoladex injection this morning. Talked to the NP on the phone yesterday and told her I was doing fine, so we cancelled the face to face. My DEXA and bloodwork will happen when I have my post-Nerlynx checkin with my MO in a couple months. Gives me more time to lift weights so I can hopefully avoid yet another therapy.

Yes, because of Coronavirus. Cancelling was optional, and it was an option I was interested in since I don't see the point of these 3 month appointments to begin with. They are trying to reduce points of contact at my clinic, just in case.

I feel for those of you in chemo right now. As if chemo isn't scary enough.

rljes, I go for Pain Management consult for SGB, stellate ganglion nerve block on Monday, 3/23 ... I am hoping it works 2 fold for my severe migraines and debilitating hot flashes. I need to take "evidence" for the hot flashes LOL so I am looking for those now.

As far as AC-Taxol H/P vs TCHP, they are both good and they both work well !!!

... I had both, I first had 2 rounds TaxotereCHP, I then switch Onc and he put me on 4 rounds AC, stated because I was TP amplified and then 1 round TaxotereH/P load dose and then switched ONC again because I got real sick when he tried to RELOAD Taxotere HP, should have been just a normal dose not a reload high dosage ... AC was not nice ... with my 3rd Oncologist in Sept 2019, I started normal 12 months/18 rounds of H/P. he told me no more chemo / taxol or taxotere becuase I already received the 6 rounds dosage in 3 rounds. This is when he told me it's in the numbers and wish I started with him because he would have done Taxol / Herceptin low dose weekly shown to be most tolerable and less side effects ...

New information that was presented at the San Antionio Breast Cancer Conference Dec 2019 change alot of regimes... https://www.breastcancer.org/treatment/blog/2019-s...

Some Oncologist have now switch to Taxel and Herceptin low dose 2mg Weekly, no AC no TC, it is now even listed like that in the Herceptin Manual, https://www.google.com/url?sa=t&source=web&rct=j&u.../www.gene.com/download/pdf/herceptin_prescribing.pd...&ved=2ahUKEwiJ55rJnKXoAhXaVs0KHcUqAb0Q6sMDMAB6BAgFEAY&usg=AOvVaw25oxxRy9LeqchBAgRnf_tO or at Genetech.com I think research has showed they are moving away from Chemo regimes and moving more toward targeted/ Immuniology therapies.

It is now longer One Size Fits All, as it should be, we are all the same TPBC but we are all different with ER%, grades, node involvement, etc etc . I think I read there are over 20 subtypes.

Keep Moving Forward!

rlmessy- thank you. Sad you had the bad reaction to Taxol but glad you tolerate the Herceptin well.

Elaine — Thank you for your input.

my question to the doctors is how do they know the medication is working if they don’t test estrogen levels. I understand some medication makes the cancer cell not eat estrogen but the purpose of other medication is to eliminate estrogen in our body. The doctors test for the level of tumor markers in our blood to see if chemo is working why not test for estrogen levels to see if those medications (tamoxifen, arimudex or Fas??) are working.

I’m new in this world of chemos immunoassay/ targeted therapy — but some of the things just don’t make sense.

Ha - I knew my MO is an idiot. he said there is no such thing as testing Hormone Levels. I need a new one desperately. I cancelled Tuesdays MO appt. He actually called to ask why - I answered " why should I come in, to talk to you about the weather"? He laughed and said see you in 3 months.