TRIPLE POSITIVE GROUP

Thanks elainetherese and 1946taco. I appreciate the input. I think I will look to join a Starting Chemo group.

This 2nd oncologist ended up emailing me a PDF with some links to studies that showed the efficacy of TCHP in the neoadjuvant setting, and mentioned that there was a higher pCR in the cohorts that did the TCHP vs THP with ER/PR+ / Her2+ patients (73% vs 66% respectively). But then she also included a table that showed the TH x 12 and noted it as the "best regime", and wrote in that adding Perjeta to TH would mean a "<10% improvement in efficacy based on neoadjuvant trials". Here's the info she sent in case anyone is interested:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC62357...

https://ascopubs.org/doi/full/10.1200/OP.21.00020

She also mentioned that ER/PR+ Her2+ patients get the most benefit from Neratinib and offered to let me try this as well, though I'd heard a lot of women have bad diarrhea on this and that the benefit might be fairly small?

My original oncologist wasn't too keen about adding Perjeta to the TH x 12 treatment plan that he favors. He says he really only uses it with the Carbo. So two opinions that are pretty much opposite on that.

Anyway, thanks for all the insight and if anyone has anything more to add I'd love to hear it.

hapa - thanks for the insight. I’m not too scared about diarrhea as long as it’s not impeding normal life too much. As in, I’m able to go to a store and shop without running to the bathroom constantly. Sounds like it’s not that way. I’d give it a shot. Eating without weight gain sounds pretty good! LOL

I had surgery first and my surgeon got clean margins, clinically node negative. So I’m still not sure why she felt the TCHP would be better than just TH other than that I’m younger at 40. My first oncologist didn’t recommend Perjeta at all.

Me again, with more rash problems! I have 2 Herceptin left, or maybe 3. Not many, is the point. For the last few infusions I've been getting a lot of red bumps coming up over my left chest/breast (where the port is) that intensify after the infusion and then get a bit better by the next one. It's started moving to my upper back as well and today I had a bit of itching around my port as it was going in. I was told to take Benadryl at home and then start a regimen of Pepcid and Claritin every day, and call them if it gets worse or doesn't get better. Ugh. Anyone had anything like this?

My BP has also been high at the last two visits. Normally I'm right in the 120s/80s but last time the first reading they got was 160/105 and then 140/95 on the second try, then today they took it four times over an hour and it was always between 140/90 and 150/100. I was instructed to buy a home BP monitor and check it every day and call them and my PCP if it stays like that. I went to the pharmacy and did it right when I got home and it was 128/84. I have never had white coat hypertension and they have months of data of me being within a certain range, even when I was starting chemo and very stressed out. That's the only thing I can think of but I am baffled. Why now? High blood pressure can be a side effect of both Herceptin and exemestane but then why was it normal again later? Is the home machine bogus?

I'm frustrated because I thought I was done with problems once Taxol finished and everything was a total snooze for months. Now suddenly I've got rashes again, and hypertension. Just stop already!

Thanks 1982M. I've checked my blood pressure about 10 times in the last 24 hours and it's consistently fine and in normal range. So I have no clue what the deal is but I'm reassured by that. The AIs have been going fine, the expected joint pain and stiffness but it fades if I move around. And zero complains about no periods!

However, I went to the bathroom at work during lunch today and realized that my face was suddenly very red and I had some big red blotches on my neck, chest, and stomach. This was almost exactly 24 hours after the last Claritin/Pepcid. I took another round and it was gone 30 minutes later, though it's come back in the last hour and is fading again. This is exactly what used to happen the day after Taxol. I probably should have called the MO's office but I couldn't stand the idea of messing up my work day being told to take Benadryl or having to go in when past experience tells me it's probably OK for now. I'm going on vacation Sunday and I don't want it ruined! With Taxol it did eventually build up to anaphylaxis but not until the infusion itself when my body decided it was one too many. I sent a message through the portal in case they want to try Benadryl in advance next time and I need a driver (have never fallen asleep but won't risk it) but I'm more annoyed than anything, and concerned that this might mess with my MO's willingness to try Nerlynx.

Gamzu, you might want to tell them to run your herceptin for 90 minutes. How many minutes are they running it now?

I had a 30 minute when I started on herceptin only and it was kind of wierd so the next time they ran it at 60minutes. If I'd known then what I have learned here I would have had a 90 minute infusion every time.

Anyone here stage IV and has done Enhertu?

Thanks SpecK, I have looked at it, but just saw this one pop up in the "active" threads, and was just reading through. I started way earlier on pages and saw some on Enhertu. I will recheck the thread you mention. I know Illimae is on it, I can always ask her too. It will be my next line of treatment, sometime the end of Sept. I'm going to MI to visit family for 2 weeks and MO doesn't want to start me until I I get back.

Very unhappy bunny over here at the moment. The prednisone has mostly worked to get rid of the hives but the leathery dry patches that were previously non-bothersome for months aside from slowly expanding, have suddenly started stinging, burning, and itching within the last few days and it's driving me nuts. It's up and down both sides, curling around to my back and under both breasts, and my cancer breast looks like the radiation dermatitis regressed by 3 months. In the past things have looked worse than they felt and now it feels worse than it looks. Heat makes it immediately worse so showers are miserable and going outside in this weather (90s with high humidity) is very un-fun.

I called the triage line this morning and they had me come in to see an NP, who got an on-call MO to come take a look, and basically I was told they don't know why it's doing this right now but it's probably a Herceptin reaction that hit a tipping point for some reason, that it burns because the skin is so dry and cracked (yeah, thanks, I couldn't tell), and to try Aveeno baths and wait to see my regular MO on Wednesday. I'm mad about this, partly because the prednisone is messing with my head and partly because I haven't called the triage line for one single thing the entire time and was hoping for more than being told by a random MO who didn't even know my correct medication list that basically it's just "one of those things." Why is it suddenly spiraling now, why isn't the prednisone working on it or indeed seeming to make it worse, and why isn't there something else to try?

Two more. Next one is supposed to be Thursday. I'm meeting with my MO tomorrow to discuss the plan of action. I wish I thought we could stop at 15 instead of 17 treatments but it's probably not smart, unless she has studies to counteract the ones I've read or additional wisdom.

I think I've done fine with the side effects from Taxol, exemestane, etc. because I knew what was common and what to expect. This has happened out of the blue and no one seems to know what or why. I don't like the guessing. Hopefully my appointment tomorrow will bring clarity but I have doubts and am preparing for letdown.

gamzu710 - I'm glad your oncologist is taking action. I've read a lot of your posts and I really feel for you. I hope all of this resolves. You've had such a tough time and you deserve better. You're in my thoughts.

gamzu - I have been following along with your skin issues - I was actually going to post and say you should look for a derm that has oncology experience - so, I am glad you have that as a possible avenue. I am also a person with skin issues - big time allergies and sensitivities, along with at least 50 skin cancers in the last 30 years. I am fortunate that my MO happens to be married to a derm so he seems attuned to skin issues and reactions, and he also went to med school with my MOHS surgeon derm. I developed a photo-sensitive rash during chemo and Herceptin, but it did resolve post-chemo - I will never know if it was just the chemo or the combination of chemo and Herceptin. My only concern with stopping the Herceptin and the Aromasin at the same time is that you won't know which thing was the problem. Not that I want you to continue having a problem though! I imagine that is you restart Aromasin, or change to another med and the rash crops up - you will have that answer. Have you tried Rx topical steroids combined with Rx hydroxizine? I have a prescription for Triamcinolone for the shingles I got after my first Covid vax, and it worked pretty well at taking the rash down a few notches, and I routinely need hydroxizine post-surgically because I am allergic to adhesives, even surgical dressings.

Hysterectomy and Oophorectomy -
hello everyone -

I wanted to get some thoughts and your experience with post cancer treatment issues.

I was triple positive (48 years old) and completed all my treatments. I was pre menopausal when chemo started. However, I didn't get my period after the first chemo for almost 12 months. Docs switched me from Tamoxifen to Anastrazole earlier this year when the blood work was done for hormones which showed I was post menopausal. Fast forward 6 months, I started to get some light bleeding every month which obgyn said that was abnormal bleeding due toover grown uterine tissue - per biopsy done. Since it was recurring I wondered if I got my periods back and had the MO test my hormones. FSH and estradiol were premopausal and LH borderline of menopausal. MO concluded I was pre menopausal again and now back on Tamoxifen. meanwhile, obgyn says any bleeding post menopausal is abnormal and is suggesting removal of ovaries, tubes, uterus and cervix since progesterone treatment isn't recommended for me. Now that it looks like I am premenopausal, is this major surgery truly necessary. Has anyone been on the same boat? Is having ovaries a detriment? If it's just the lining of uterus, can't I have a D&C and maybe remove ovaries (instead of the whole thing) and keep watching it? Has everyone who has had TP cancer be on high risk for ovarian cancer? This surgery to remove everything makes me nervous.

Any thought and sharing of experience is welcome.

Please let me know! Thank you!

Thanks Elainetherese. Brca was negative. I haven’t spoken to my obgyn after the blood test came back for premenopausal. What’s the advantage of zolodex vs tamoxifen? My onc has not talked to me about zolodex. Have you ever checked your uterine lining at all?

Yeah, I ended up doing Zoladex + Aromasin because of the SOFT trial. Because I've done an AI and not Tamoxifen, I haven't had my uterine lining checked at all. AI's don't have an impact on the uterine lining.