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Hello, everyone!!

I realize I have not been on here much lately and keeping you all up to date. I am sorry. So a, sort of, brief overview of what has been happening is that I am now being treated at MSK in NYC. I am now being treated with mechanist, a chemo pill, and it has been quite the roller coaster since I started that.
At first, my body was handling it fine so my doctor gradually kept increasing the dose. I started at the lowest dose of .5 mg and the highest does I got to was mg before all hell broke lose. It started as a small painful rash behind both of my knees so I started wearing a skirt everyday. Then, the rashes spread to my upper legs and became even bigger, my legs swelled up to the point you could not see my anckles and huge red stretch marks appeared, my skin all over my body got extremely dry and I would go through periods of extreme exhaustion or my body temperure would drop drastically.
During this time, my Dermatologist perscibed a cream to put on the rashes that my mother had to apply for me since she helped my put lotion all over my body as well everynight. It was extraordinarily painful. I went off the chemo pills until my legs cleared up which was probably about 3-4 months. It felt like forever!
Then, I went back on the chemo pills at .5 mg everyday every other week. Again, the dosage gradually went up. I do not remember what happened, but now I am on 1.0mg for 2 days then off for 3.
About a month ago, my hair became brittle and broke off and, since we are in lockdown, my mother cut my hair before I started to look like a female version of Smigel from Lord of the Rings.
There may be a few more developments to come. I will do my best to keep you up to date. Stay safe everyone!
#mechanist #Chemotherapy #rashes #dryskin #RareDiseases #MemorialSloanKetteringCancerCenter #LordOfTheRings


Does anyone have any recommendations for extremely itchy skin?

I have a large rash that is all over the top of my back and my chest that itches profusely. It looks like giant patches of dry skin, but unfortunately it doesn’t seem to be responding to any sort of treatment like regular dry skin would. It’s definitely not eczema (I have it and this rash is not presenting even remotely the same as my eczema) or psoriasis.

My GP isn’t sure if it’s idiopathic hives or something else and unfortunately the itching is driving me crazy. I’ve had it for at least a month now. I’ve tried different lotions, cold showers, coconut oil, etc.

Also, I do have a photo of the rash, if that helps at all! I just wasn’t sure if I’d be allowed to post it in this post, so I figured I wouldn’t.

Any suggestions are appreciated! thank you!

#ChronicIllness #Spoonie #Skin #itch #ChronicPain #itchy #suggestions #dryskin #Rash #rashes