chunkyfrog wrote: ↑
Sat Aug 14, 2021 1:00 pm
Now to the pitch for advice:
(please, of course.)
When my scalp gets sore, what works to make it feel better?
Same thing with mouth and throat . . .
I have been doing some research, but sometimes it's just useless ads.
Dear Froggy ~~~
...since you are asking for suggestions ~~~
I was part of a study for chemo neuropathy during my over 16 months of chemo. I took three types of chemo at very high dosages for stage IIIc. (and radiation and multiple surgeries)
I did NOT get neuropathy and watched almost all others in the control group complain of terrible neuropathy in their hands and feet. I was very young and healthy going in so I am not sure if that was the reason or if it was the l-glutamine?
Check with your doctors and see if they have heard of the Sloan Kettering L-Glutamine neuropathy study and if they think this would be appropriate for you.
I was told to take one heaping tablespoon of l-glutamine three times a day in 8 ounces of water or juice. Very quickly I realized I couldn't do it that way. So I mixed one heaping tablespoon in a shot of cranberry and just threw it back and chased it with 8 ounces of water or juice. I had ZERO neuropathy ... which was considered remarkable.
Also, remember particularly if you're having the initial "bolus dose" that chemo OFTEN constipates. Nothing could be worse because you want that chemo and dead stuff OUT OF YOU. So consider proactively taking a stool softener just to get ahead of it. Maybe as soon as you get home on your first dose. If this seems unnecessary you can always stop.
Zofran controlled my nausea pretty well but I did use a bit of ginger ... like "ginger chews". I had emergency Lorazepam which does help in a really bad nausea crisis. This was something my doctor used that I understand is a bit rare? The few times it was bad I was grateful I had it. Remember chemo is cumulative and so it gets harder as you go along.
I also had a prescription of chlorhexidine that I applied with a q-tip to any mouth sore immediately.
When my hair started coming back it couldn't seem to poke back out through the shaft and I got bumps and needed a prescription cream to keep that from getting infected. I forget now the name but will be happy to get that to you when you are at the hair growing back stage.
Also, I didn't like the advice about limiting fresh fruit and vegetables as they could have bacteria on them that my chemo destroyed immune system couldn't fight off. But I did become fanatic about washing all fresh foods and I did cut back. I used diluted peroxide as a wash because I really dislike the smell of vinegar.
Remember to drink drink drink and flush all of that out of you. Kill it and flush that stuff out of you. And always stay on your chemo schedule. My oncologist told me the chemo can only kill when the cancer cells are dividing so they really try to make sure your hitting that schedule. I saw many people who prioritized other things and just switched their days around willy nilly.
Though I was stage IIIc I took chemo with a group of 30 who were mostly stage iV. That was the hardest part. Something I never get over. I had a tragic experience and I lost my last group member over a year ago. It's something I never speak of and just writing this I realize I am holding my breath and I think my heart has stopped beating too.
I do not think its wise to divide chemo groups like this. I wish I had had others less sick in my group. Though now with COVID I do not think there are the large rooms of people. IDK? for sure but it's most likely isolated and segregated today.
I cannot tell you how HAPPY I am to hear you caught this at such an early stage.
Mine was caught by fluke and I was very healthy and didn't have a clue. I beat myself up for years for not knowing sooner and not catching it before I got such a grim diagnosis. ... but here I am! Still alive and have outlived my first five year cpap machine replacement. I hope to collect a dozen more!
Peace be with you and love surround you.
Began XPAP May 2016. Autoset Pressure min. 8 / max 15. Ramp off. ERP set at 2. No humidity. Sleepyhead software installed and being looked at daily, though only beginning to understand the data.