TRIPLE POSITIVE GROUP

Bobina123, so sorry you are feeling this way. I have two comments I hope will be helpful.

First, outcomes for people with your profile with the HER2+ subtype are very good! I’ve seen some researchers say that the overwhelming majority of early stage HER2+ patients who undergo the recommended treatment DO NOT have recurrence. So it would make perfect sense to look forward to just healing and moving on and to not look back and worry about things you cannot change - like postponed mammogram appts.

Second - can you talk to your oncologist about emotional support services that might be available to you? There is no shame in having anxiety, acknowledging it and seeking some relief from it. Whether that’s therapy, support groups, medication or what have you- find out what support is available and make good use of it!

Good luck and get busy living! Doing things you enjoy also might help push away those unwanted thoughts. Be kind to yourself

Olma61, thank you SO much for your good advice...means a lot.

Gamzu, I'm so sorry about your friend - not the expertise I wish any of us had - , and sorry it was rough today, but am really glad you're getting a port and being monitored. I can't say as I like mine, but I am really grateful for it, given the number of blood draws and infusions we're all having to deal with over the next year. I really hope it makes things more comfortable and less rashy for you. My infusion nurses told me the first taxol is usually the worst in terms of reactions, and I hope you don't have any more for the rest of them. Either taxol or herceptin gives me a rash, but it's mainly on my face and chest, and has gotten worse over time (# 8 was done on Wed). I kind of look like I have measles most of the week, and I cannot wait for that to go away.

I know a lot of people say to make sure you drink enough water, and I'm going to join anyone saying that: make sure you drink enough water, or tea or some liquid that is palatable, especially this weekend. I wish I could bring you some soup. Hang in there.

Side effects from #1 so far not bad but I am freaking out. I just looked at the bloodwork results posted in my oncology portal and my liver enzymes are high. This was the pre-chemo blood draw. No one has reached out to me about this and I'm reading that lots of things can cause this transiently, particularly drugs, and I was on a lot of various things for my egg retrieval right before chemo started that could be culprits, but I'm very worried.

They're not just a little bit high. ALT and AST are both more than 4x the highest end of the normal range. Alk Phos is also somewhat high but at least within shouting distance of the reference range. I looked at the bloodwork my PCP did back in May and everything was normal. ALT has jumped from 10 to 229, and AST has gone from 15 to 160.

I sent a message to my oncologist and I'm pretty sure the answer is going to be to just see what the next bloodwork says, but has anyone had this and it turn out to be nothing? Obviously my mind is going straight to mets. The SNLB was negative so we didn't look but I know from reading on here that isn't always foolproof.

Thank you all for your advice... I really appreciate it. Grateful to have this support group....

Got an initial response from the NP that elevated liver enzymes are normal on Taxol, which made me scream in frustration because my entire concern is that my enzymes are way high BEFORE Taxol even started. It was like they put me into a "Taxol patient" box without looking at when the labs were actually drawn. But I replied back pointing that out, and the NP called and discussed it with me.

The hypothesis right now is that all the medication for the egg freezing may have mildly inflamed my liver and that we should watch and wait and it will probably normalize. They don't want me to get concerned about underlying pathologies right now. The NP said I have been through a lot in the last month even without chemo. Which is true.

So, I'm going to try to take a deep breath. It has crossed my mind that if my numbers were that high before the first dose of Taxol, how bad are they going to be next time, but one step at a time, I guess. But I've basically stopped taking all OTC meds and supplements because I don't know what might be contributing, and I'll hope for the best pain-wise with the port placement on Wednesday because there is no way I'm taking anything with Tylenol in it right now if my liver is already mildly upset.

I always took my AI's in the morning. Maybe try that on a weekend.

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.

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!

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.

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?

Glad to hear! Phew!

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.

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.

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.