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Rare cancer: ovarian clear cell carcinoma
Gynecologic Cancers | Last Active: 16 hours ago | Replies (170)Comment receiving replies
Thank you so very much for sharing this. I hope the same lowering of neuropathy happens this time - had my chemo yesterday. I napped the whole time - 5 hours - so I'm still awake at 1 am. They lowered my Benedril dose, but it still knocks me out. They gave me a dosage for the B6 and the pills from Amazon matched that. I should go look it up but, hey, I just had chemo. Getting up off the couch is too hard. If anyone needs dose info, let me know. How about Lipoic Acid? Do you take that?
Interesting that it was different each time for you. I don't have enough info yet. Fatigue really bad both times. Also got cold sores and that wipes me out. Now I'm taking Acylcovir preventively. I thought i had B vitamins covered with my multivitamin. I was surprised to see what a low does they had. Not nearly enough for this
Did you do Taxol before?
I hate being bald. I'm 76 and had mid lenght silver hair that I put up loosely with a comb. I don't miss plucking out my moustache and chin hairs though.
Love this forum!
Replies to "Thank you so very much for sharing this. I hope the same lowering of neuropathy happens..."
Thanks for the chuckle re no need to pluck the random facial hairs!
When my hair came back, it was not quite as thick on my head, but those damned chin hairs were excited to return. Still, if that’s my trade off for survival I’m in.
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I'm 74. oddly i don't really get fatigued. and i did not try lipoic acid since everything seems to be working well enough to control neuropathy and get my counts high enough for my next blood test. Will look it up, however.
my 6(8) hour infusions were cisplatin, taxol and herceptin - how just herceptin (keytruda).
yeah, but hair is just hair - would rather be living and bald. just wait until you lose your nose hairs (drip, drip) and the stuff in the nether region (feels very weird).
i am gargling with 1 t salt and 1 t baking powder 3 times a day, had to switch to a VERY soft chemo toothbrush (https://www.amazon.com/dp/B00N3Z9WDU?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1 this one from amazon from Tess - took a while to come but didn't start getting bleeding teeth until pretty far along and it is sporadic so occasionally i use my old soft bristle). also i had a friend who told me to switch a large spoonful of coconut oil around my mouth in the morning. She said it tasted terrible - i like the taste of the the one i got from amazon ( la tourangelle - https://www.amazon.com/dp/B0CSPJMCH7?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1&th=1).
the thing that was bothering me and keeping me from sleeping was the steroids that they put me on (5 the night before chemo, 1 in the a.m. and p.m. for 4 days after) - plus my face got really red even with the allegra they told me to take. I am sleeping a lot these days but never that bad plus i try to walk 1-2 miles/day.
oh, i guess i'm dmmr, not pmmr which may make a difference. actually i wanted to get Jemperli (which is for pMMR) but since they said this was working, it WOULD be off label.
maybe you really need a second opinion!! (I thought about finding a gravesite but too depressing! instead, i'm booking foreign travel until i can't do it anymore. my oncologist hates it but i'm scheduling everything around chemo treatments. I do notice that i don't have much bladder control for about 4-5 days after chemo. need to wear a diaper on flights > 4 hours (which means i need to get manually patted down at the airport but whatever).
good luck!