@A MyMyelomaTeam Member I understand exactly what you’re saying, I’ve not been feeling well this week but you are so right, you have to keep at it, one step at a time. Some days are worse than others. Be patient with yourself and take care of yourself and hopefully tomorrow you’ll feel better. Sending you hugs and hoping that tomorrow will be a better day 🤗♥️

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A MyMyelo...

After 2-1/2 years of oxycodone, and recently Xtampza (extended release oxy), and finally Tylenol 3 (300mg/30mg codeine), I finally phased out all of these pain Meds that I've been taking to manage my neuropathy from my treatment is 2021 (Dadrz+RVd).

A few months ago, it became obvious that the Oxy products were contributing to my ongoing muscle weakness in my legs and cramping in my feet - so I said to hell with it and phased them out completely.

My feet and hands sting like crazy but I'm getting through the day with a max of 6 Tylenol (500mg each - one or two at a time). I'm back trying various hand creams to quite down the stinging. Main issue is at night when I need to get to sleep.

I spent today reading. All options of Lidocaine, hydrocortisone, capsaicin (pepper) cream, Tylenol 3 w/ codeine, etc. are just no good for long term daily use. They will eventually build up in my blood stream and cause side effects and damage.

I'm back to CBD creams. Just tried one of the many I have hanging around. It may help. It becomes my next test for tonight.

To only be dealing with - only when I try to go to sleep - is great progress.

Another piece of today's reading is for the 3x daily - 10mg Ritalin that I've been taking for at least a year. Ritalin creates dopamine in the brain. Our MM Treatment Meds and MM itself greatly reduces our dopamine, causing significant fatigue.

Most days, I'll take the 10mg Ritalin 3 times and on occasion only twice but not past 4 PM or 5 PM in the day. It's been extremely helpful.

Yup - one day at a time and celebrating the small things. I give myself a pat on the back when I can simply get dressed, go for a walk, or pull a few weeds out of my garden. 👍🏻

@A MyMyelomaTeam Member,
Why isn’t your pain addressed? Do you have a pain management specialist? My Orthopedic Oncologist is referring me to one, even though my pain now is minimal, but he knows it will get worse as the cancer progresses. When my mom was on Hospice, they gave her a tiny amount of Morphine and a fentanyl patch, which really made a difference.
Talk to your MM Oncologist Specialist to see what they recommend.
Paula🌹

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A MyMyelo...