TRIPLE POSITIVE GROUP

Yeslama -

it was me that asked about the Herceptin/Perjeta vs. Kadcyla. Thanks for the answer! It's so interesting how people's responses are different. My TCHP has resulted in horrible diarrhea. I had heard that Perjeta might cause that, but my MO thinks it's the Taxotere. They reduced my dose for Round 5 and it was much better. So I'm not sure it's the Perjeta. For me, I have a little the first 2 days, then I usually have 2 or 3 days where I don't poop at all. Then a day or two where it's normal or mild constipation. Then the diarrhea has been hitting. Some days it's once and manageable. Others, it's pretty virulent. I have my last round of TCHP on the 24th and then surgery, then continued biologic treatment until I hit one year. Not sure which one they will recommend, until we have the pathology from the surgery. They are saying Herceptin plus possibly Perjeta, but who knows. I just want the side effects reduced or gone. I know what you mean about everything liquid tasting terrible. I have a horrible taste in my mouth, especially at night. I can't get enough liquid some days because nothing tastes good in my mouth. My appetite is good and food tastes fine. But not liquid. I have the horrible dry mouth the first week, and then that seems to abate.

Kris

ajminn - Thank you! That's all very reassuring. And yes - that disgusting taste is the worst! It bothers me most at night. I'm trying to get in fluids and I just don't even want anything in my mouth by then. I so think the Taxotere is causing me the most issues, so I will be glad to see the last of that.

Did you have your surgery yet? We have almost identical DX - you are about 2 months ahead of me. Mine is scheduled for August. I assume I will need a small amount of radiation because I also had one positive lymph node pre-chemo. I had chemo first. Also - are you on an aromatase inhibitor? They haven't said anything to me about it. I'm 54 and post-menopause, so I'm not sure if I will need one or now.

@ajminn - they're doing Lupron and AI?

I expected that but, my MO wants to go with Tamoxifen until I'm done with Kadcyla

Morrigan- yep I get the monthly shot (zoladex) and the AI daily pill (aromasin). My MO says I can move to the every 3 month shot version once we see how the monthly goes. I’m not looking forward to it. I’ve googled too much about SEs (just like I’ve done with every treatment I’ve gotten)...I’m hoping I handle them well. I’m supposed to stay on them for 10 years.

I've been following on this board for a little while, but now I feel ready to join the conversation. Triple positive diagnosed 1/14/20 in left breast 10cm area and node positive. Completed 6 rounds of TCHP without too much trouble on 5/27 and continued on with HP every three weeks. Post Chemo scans showed complete imaging response to chemo. Unfortunately, I had DMX and sentinel node biopsy last week, both the breast and one node actually positive still for some cancer. Going in tomorrow for axillary node dissection and lymphaticoventicular bypass surgery. Anyone here had that microsurgery? It's supposed to prevent or lessen the effects of lymphedema after node removal.

After surgery i'll meet with oncologist to reassess treatment, assuming I'll switch from HP infusions to Kadcyla. My MO has been on leave since March, I think for Covid precautions, but is coming back this month. I was put with another MO who was also good, but now I'm hoping my origninal MO is back and here to stay. So many different treatments for Triple Positive hormone, it's really interesting to read all the different options people are going through. I'm so focused on getting rid of and keeping the cancer away, but I'm also a little nervous about the intense side effects of the long term hormone therapy. I'll do anything to stay cancer free, but I'm starting to feel a little sad at the thought of how much different my life may be from these therapies.

Also, I'm 43 year old mother of 4 kids ages 8-14. I live in the suburbs of Chicago.

Fab4Mom, sorry if my post made you think too much ahead. The journey is different for everyone. I have a good friend that I met during treatment whom are not bothered at all today. I do not think about cancer every day anymore and some things are for the better as well. You are in the mist of treatment so take one stride at the time perhaps. One thing my doctor told me way back is that being tripple positive use to be bad, now it is good due to all the treatments available. Sending strength and you will get threw this.

Kris - I sent you a PM. I may have been confused about your age (maybe from someone else's post) but what I said doesn't change. It's up to YOU.

morrigan - Any SEs I experienced (a little muscle/joint ache after the first treatment, flu like symptoms on the second treatment) were noticeably gone by the fifth day after treatment. I’ve been blessed for sure.

I have noticed a lot of women getting the ovarian suppression shots. They did a blood test on my to determine if ai was in menopause but I guess I’m still pre-menopausal. My biggest surprise came Saturday when I started my period again after 8 months!

Ajminn3 - how often is the zoladex shot? It’s supposed to hurt? Originally I was told chemo, surgery, HP and tamoxifen, but now Im realizing there are so many options for hormone therapy. I’m going to have to do my reaearxh

ajminn3,

I've been on Zoladex and Aromasin for over five years. I don't find the Zoladex shot to be particularly painful, though the needle is big. The nurse is literally shooting a pellet into your subcutaneous fat. I don't get bruised, and I don't bleed much in most instances. One big difference between doing Aromasin versus doing Tamoxifen is that the former is associated with bone thinning. I developed full-blown osteroporosis by Year Two, and am now on Prolia (which has helped me recover some of my bone density). Otherwise, both meds are associated with hot flashes and mood swings/depression (I'm on Celexa for that). Good luck!

ajminn - I also get zoladex and concur with ElaineTherese that it is not painful. I used to get lidocaine shots before my zoladex shot but now I just get iced. No pain or bruising. I got them in my butt for a while because I was planning fat grafting and those bled a lot but didn't hurt. I might get a drop or two out of my stomach but that's it. I had pretty bad bone density on my baseline DEXA; full blown osteoporosis. I haven't been on any biophosphonates but my bone density improved at my 1-year re-scan with relatively little intervention on my part.

wahoo - I was surgically menopausal for nine years prior to diagnosis with breast cancer. My ER+ was 96%, meaning that on the slide reviewed by the pathologist 96 out of 100 cells had an estrogen receptor. That is a lot of opportunity for estrogen to fuel, and I had been post menopausal for quite a while. Aromatase inhibitors work on the conversion of androgen to estrogen from the adrenal gland that continues to be produced post menopause. The function of aromatase inhibitors is not connected to the estrogen produced in the ovaries, which basically ceases at menopause. Not taking aromatase inhibitors potentially opens you up to a recurrence driven by the available estrogen you still have. I took letrozole, then anastrazole - both generics - for a total of seven and a half years. I had some annoying side effects, but it was worth it to me to do all I could in preventing a recurrence. I understand your trepidation about taking AI drugs, but to me, leaving out this important aspect of means your treatment is incomplete, and could leave you at risk. This decision is up to each of us, of course. You might consider running your numbers on the PREDICT calculator with both taking/not taking, and see what it says. This calculator takes Her2+ into consideration whereas Cancermath does not. This is a UK calculator so be sure to put your tumor size in as millimeters (cmx10) and your chemo as 3rd Gen

https://breast.predict.nhs.uk/

I would guess the percentage is better now with Kadcyla and Nerlynx being available. Whenever I get down about long term outcomes I remind myself that all current data is old data and, BC survival rates are constantly improving.

i really can’t take those prediction sites, they are overwhelming and not helpful in my treatment anyway. But I have fallen prey to trying them.

Huh, I never paid close attention to the breakdown, I had them backwards. I knew surgery provided the most benefit but, I thought Chemo was 2nd and, hormone treatment 3rd. It's the opposite, Hormone treatment provides more benefit than Chemo.

It's also interesting that your rates go up if you've already received 5 years of Hormone therapy.

Has anyone had an MO suggest more than 10 years? One mentioned the possibility to me. Obviously there are downsides and, I don't know if any studies have been done on long term (10+ years) pos/neg.