Nov 8, 2021 12:46PM Roo73 wrote:
Hi Maddie, thanks so much for starting this. I had thought of doing the same, but was worried I wouldn't have the energy to keep it up. I promise to contribute though.
Last week I started a 12-week course of weekly Taxol + Herceptin for a small HER2+ tumour that unexpectedly made its way to the lymph nodes. I'll add my details to my profile but am waiting on a bone scan for a possible met and don't want to jinx it! The side effects of my regimen are not supposed to be too bad. So far I've had a bit more hair shedding than usual but nothing serious, and some numbness in fingers and toes (a bit more worrying, that, so early in the treatment). And some bad mood swings, probably from the dexamethasone they give you along with the chemo to control nausea. I'm going to ask them to cut it down or skip it for round 2 tomorrow. I'll take nausea over mood swings any day.
Maddie, I hear you on the port. At first I said no way, but the nurse talked me into it, because the Herceptin infusions continue for a full year after the Taxol is finished. Also, so many people on these boards have said they were initially queasy about it but later happy to have it. I have good veins but they only have one arm to work with because of the lymph node surgery.
Also, judging from last week: the Taxol really burned; I could feel it entering the veins all the way up my arm. They slowed down the infusion which kind of helped (well, not really…). Maybe if it goes into a wider vein it will be better? I don't think the burning happens for everyone. It was a reminder that this is really toxic stuff. The other thing was that it was awkward to use my hand when I had to navigate the loo (which you will, with all that fluid going into you); it also nixed my plan to spend my time in the chair knitting.
If you're using the mitts I guess you won't be knitting though. I'm very curious to hear how that goes, as I'm experiencing some neuropathy already. Keep us posted! I've heard great stuff about the cold caps too.
It took exactly 4 months for me from callback on my imaging to starting chemo. It was a pretty awful wait, but hearing your story makes me appreciate that I at least had time to take everything in. I was VERY ready to get going last week.
My port placement is Friday too! Good luck; hope we can compare notes. Thanks again for starting the thread.