TRIPLE POSITIVE GROUP
Comments
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I always took my AI's in the morning. Maybe try that on a weekend.
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Gamzu, do you have any recent (like within the last year) bloodwork from before the egg harvest protocol that included liver enzymes? I'm sorry you're having to point out the obvious to your team - very frustrating, and hope you get some actual answers soon, and that your enzymes revert to normal.
While I've had other issues with taxol, my liver enzymes have actually decreased, so while it is an established side effect, it doesn't necessarily happen.
For port pain, I don't know if it affects liver enzymes or not but if not, have to look that up, but cbd tincture worked very well for me.
Just finished number 9 today with a further dose reduction due to neuropathy. This is so gruelling at this point. I don't know why these last 4 seem so impossible to do. Usually by Tuesdays I'm back to normal, but not the last two weeks. Was still super tired and nauseated yesterday. And then comes radiation.
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AMG2--Yes, I had routine comprehensive bloodwork in May and had ALT 10 and AST 15. Now it's ALT 229 and AST 160. So not only is it 4x the upper end of the normal range, it's like 10-20x higher than my own baseline 5 months ago. I'm sitting here gritting through the port placement pain without taking anything because I know for a fact that Tylenol inflames the liver and I was on a lot of Advil prior to last week's bloodwork due to Covid booster side effects so I can't be sure that didn't exacerbate it either.
The more I think about it, the more upset I am. I was chatting to someone yesterday on another board who had her Taxol paused with liver numbers better than mine. Searching this board has also turned up several people who had pauses or dose reductions with lower numbers than I have. I'm suspecting that my labs weren't even reviewed before we started and it was just assumed that because it was baseline, it would be fine. If they were reviewed, I would have expected someone to speak to me and acknowledge that my liver enzymes were starting out very high but they were going to proceed anyway and why. I have #2 tomorrow and I will NOT be letting that happen again.
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1946Taco
I thought about that but, was worried about the SE's during the day. I have off tomorrow and Friday and will give it a try, thanks for your response! I'll let you know!
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Hi,
my first oncologist he recommended that I stay on hormone therapy for 10 years (I am currently taking Tamoxifen) but my current oncologist told me that I only needed to stay on it for 5 years (I am triple positive, but estrogen 25%)....Not sure what to do? I still have plenty of time to figure this out, but thought I would ask the group? Thank you!
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Bobina123,
My oncologist is having me do hormonal therapy for 7 years because a recent study said that 7 years was as good as 10. I should note that 95% of my cancer cells had estrogen receptors, not 25%. See:
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hi Bobina. - ask your MO to order the BCI (Breast Cancer Index) test. It's used to determine if there's a benefit in staying on Tamoxifen or AI for longer than 5 years.
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Thank you, Morrigan_25, I appreciate your advice!
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Someone should be able to give you a link to do your own Index predictor about continuing on AI's. Sorry I can't. Maybe Special K?
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My complete bloodwork results just posted to my portal and clearly the egg freezing meds were making my liver angry because they have now dropped precipitously given some time off. ALT 39, AST 28. Not quite my personal baseline but normal range! And I can stop fretting that something more sinister is going on.
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Glad to hear! Phew!
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Lilly…..I’m late to the party but I just finished my year of Herceptin/Perjeta in injection form. It’s called phesgo and the injections take 5ish minutes to inject. So I’m wondering if the issue is with the nurse who is doing the injection? I have never had an issue. I feel the initial stick and then we chat and I’m done. I got a bruise once but it wasn’t my regular nurse and she pinched my thigh to do the injection. It was more uncomfortable that way and I did bruise. They alternate which thigh. I’m happy to answer any other questions if you/your friend have them. I was so happy not to have to do it through infusion.
198….I had skin sparing/nipple sparing direct to implant at the time of my bilateral mastectomy. It was my breast and plastic surgeon that offered me that option. I don’t think my her2 status had anything to do with it….I think it was related to my tumor location, tumor size and what I desired for results. Happy to answer any questions if I can.Heathe
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Just shaved my head, a bit impulsively. I've only had 2 Taxol infusions and haven't even started shedding yet but have been completely fixated the last few days (including stressful dreams 3 nights in a row) on when it would start, so I decided to jump the gun and make my choice. The idea of waiting for it to fall out and stressing about how much would fall out and if it was time to buzz yet seemed worse to me than just going ahead. I actually don't hate it at all and I'm a bit surprised at how not-upset I am. I have an OK head shape for it. I will be wearing scarves and hats but in an alternate universe where I had more self-confidence, I think I could pull this bald look off. Maybe I'll be full of regret tomorrow but for now I'm certainly not cringing looking in the mirror. I've always harbored a curiosity about what it would be like and I guess now I know.
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gamzu,
I did the same thing. I had really long hair when I was diagnosed, and I dreaded the thought of it coming out in clumps. So, I got my hair buzzed to 1/4 inches. It was a relief.
Glad to hear that your head's a good shape! I never went out bald in public; just didn't want the pitying stares.
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I had barely started to lose my hair and had a buzz cut as I just didn't want to find clumps of hair on my pillow. Doing that spared me a lot of pain.
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I too liked the way I looked bald. It came back. But with the AIs I now have a bald spot on top that I hate. I do threaten to shave it all off again.
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Gamzu I'm really glad things are looking better and that you gave yourself some control over your hair, AND that it's not a look you hate.
Have to say, I'm a little envious of all of you with nice shaped heads. Got a really bad haircut once, basically a buzz cut when I was in my 20s, and had to have a passport photo taken with it, and let's just say I do not have a nice shaped head. I was very glad to have my hair grow out after that one, and partly decided to cold cap because I'm not in my 20s anymore and having that passport for 10 years pounded it into my head that I look pretty bad when bald or nearly so. :-)
Hope everyone is doing alright this eve. I've got #10 taxol + herceptin coming up on Wed. Partly I want to just hurry up and get this over with, but the neuropathy is kind of getting to me. I'm having trouble writing by hand now. Also my nails are starting to bleed and ooze, not too bad, but still ... just ugggghhh. 3 more. Just 3 more.
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gamzu - first of all, ignore my post on the weekly taxol chat since you shaved it. Second- good choice on the head shave!
I shaved my head on Friday and feel 100% better. I was genuinely curious with the hair falling out? But the anticipation and constant checking has quit now that it's gone. Also it hurt so bad it was waking me up at night so I'm glad it's gone, and I'm glad you skipped over that stage!
I also feel fairly confident with my bald head. My kids were more upset then I had hoped. My middle guy started crying. The social worker encouraged me to have them involved, but I actually think it would have been better to go to a salon, but bc they were all a little freaked out. We had take out, and carved pumpkins to make it a fun night, but they were still not happy about it. My youngest was ok but a little weirded out. My teenager was sad too. I think my husband was sad too shaving it. I was the only one who seemed ok. I prefer my bald head to my shedding hair.
AMG2: I'm sorry your having some rough side effects. 3 more is SO close to done. I find it really is flying by.
Thanks for Heather!
I've been wondering a bit about neratnib for triple positive patients after I finish Hercepti. I was reading that it's showing effectiveness in the patients with both HR and Her2. I'm wondering if any triple positive patients have gone on to have neratnib or want your oncologist say about it? I only get these brief phone calls and last time it was with an associate and not my MO so i didn't ask but its been on my mind.
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laughinggull did Nerlynx.
I'm trying to convince my MO to let me try it after my Vaccine Trial is up. He doesn't think it's necessary because I did Kadcyla and, there's no trial showing Nerlynx rates after Kadcyla. But I want to start in March, we'll see.
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Just an FYI, I shave my head every summer. It came back extremely thin and even bald in spots so as soon as it gets warm, I shave it. It's so nice in the summer
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Moody,
Why did you switch? Maybe it's just taking a while for the body to adjust. I have to start one of the AI's after 8 years on tamox but don't know which one. I want the easiest one if there is such a thing. Hard to live without sleep though so hope that changes for you. Good luck!
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momwriter - every MO seems to have a favorite to start. I had fewer SEs with femora than arimidex but you will hear a variety of experiences. Be certain to talk honestly with your MO about your reactions. A lot of people keep journals to track them. Pay attention to the manufacturer too as different "fillers" are added. Your MO should work with your insurance plan if you need a brand name.
Also remember that people who are doing well are less likely to visit and post here. There is a thread "doing well on AI's" or something like that.
We all have difference tolerance for the SE's too. Mine was pretty low - but I was over 70 at diagnosis and appreciate that for younger women, the scales balance differently.
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Taco,
Thanks. I am 56. Thanks for the suggestions. It's been interesting being off of Tamoxifen and seeing what symptoms were due to that and what are due to me. For the most part I tolerated tamox well, had no real bad side effects, but I felt towards the end my body was getting tired of it- I was getting signs of neuropathy (prickling in feet) and I started to worry. But I really don't want hair loss or bone loss form the AI. I will take my biotin and keep exercising and see what else others do to ward off side effects. Time to dust off my Wonder Woman bracelets!
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Elaine,
Have you stayed on the same AI the whole time or switched it up? How have you tolerated it? Do you do anything to mitigate side effects?
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momwriter,
I have been on Aromasin + Zoladex for 6.5 years. I will be doing 7 years on this regimen. At first, I had hot flashes and was moody, but my oncologist put me on Celexa, which solved that. Then, I developed full-blown osteoporosis, but my MO put me on Prolia, and my bone density improved to osteopenia. Recently, my feet have been hurting but after seeing a foot doctor, it turns out that I have good old-fashioned arthritis and it has nothing to to with Aromasin + Zoladex.
My hair has been fine (was always limp and stringy), but I have gained weight on this regimen. It's also very difficult to lose these extra pounds. Otherwise, Aromasin + Zoladex has been tolerable.
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Don't you just hate it when you have to take one drug to counteract the SE's from another....
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My nurse brought up subcutaneous Herceptin injections when I finish with Taxol as a way to save time. Has anyone done this? I've heard the injections hurt and I told her that, but she said it's just a "little bit stingy for 5 minutes" and that she had noticed I was a "tough cookie" so she thought I should consider the idea. Apparently not all insurance covers it, though mine has been pretty good. This idea didn't come from my oncologist AFAIK so I don't know what she will say, but it's sending me off researching.
I'm guessing it's Hylecta she's talking about? Phesgo wouldn't make sense because I'm not getting Perjeta. Painful I can deal with but it's evidence of the same efficacy as IV Herceptin that I'm after. I don't want something new if there's no proof it works as well. Has anyone done this?
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gamzu - Herceptin Hylecta was approved by the FDA based on two trials that showed comparable efficacy. Here is the info -
FWIW - I am Stage IV and in treatment indefinitely. I was NED on H&P infusions plus anastrozole. I switched to Hylecta in March 2020 and was on it (with Perjeta infusions) until July of this year when I switched to PHESGO. My scans have continued to showNED throughout the treatment changes.
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Thanks, Olma61--that's the information I was looking for!
My liver numbers were good today, even lower than last week, but I'm starting to be concerned about my ANC, which tanked from 3.1 last week to 1.5 this week. Worried they will make me skip a week if it continues. Do they ever do Neulasta or Neupogen shots on weekly Taxol?
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gamzu710 - good to hear about your LFTs. Mine are slowly creeping up again, ALT is in the 50s.
When I asked about how they handled neutropenia, my MO said the key number was 1.0 in their practice. No Neulasta for mild neutropenia on Weekly Taxol here, just a day or two delay of it gets below . I went down to 1.5 a few weeks ago and there was no delay or reduction.
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