Want to talk about Multiple Myeloma: Anyone else?

Seems I may have the Revlimid rash and also swollen ankles. Not sure why. Was off 7 days and back on yesterday. Not sure how much of an issue that is…maybe not drinking enough water or something. Hmmm.

Hmm, I’ve had some rashes from the meds I was on and usually it’s just ‘grin and bear’ it, unless it’s accompanied by breathing issues or swelling. Sometimes over the counter cortisone creams can be beneficial. Does it itch or is it painful?
Swollen ankles are charming, aren’t they? 🙄 I know you’re an avid walker and that will really help keep the edema under control as well as resting with your feet elevated. Hopefully it’s not too painful to wear shoes!

A little about hydration…when I was going through my chemo for AML and post transplant it was pretty important to drink at least 64 ounces of water daily to keep things flushed through and body hydrated. How much water are you drinking daily?

Trying to but probably not enough water. Just surprised to have this happen since not too bad the first two cycles. Not sure if a rash or what but only two spots so guess maybe not a big issue. Just had no idea. All my numbers were back to good again even liver! Always something I guess!

@tml The "Revlimid rash" is a common side effect. Mine didn't appear until the 2nd round, just like yours. It's pretty harmless, just let your dr know. I use a rich Vitamin E cream on it, to keep the dryness away. My dermatologist wanted to give me a steroid cream to clear it up, but I said "no", since I am on so many other things!

And like @loribmt mentioned, hydration is important.
Ginger

Good to know. Was surprised to see it and not sure what it meant and then the swelling all as I began my third set of pills!

@cgirl0721, I’d like to invite @auntieoakley into this discussion. She has been a caregiver to a family member living with multiple myeloma for years and can help respond specifically to your third question about what care supporters might expect and things she’s learned along the way.

Additionally, @gingerw @wyom1998 @tml @jam5 and @siosal can also share what they appreciated about their care supporters and how they helped.

CGirl, how are you doing? How is your sister doing?

She is doing well. She just completed her first of chemo, injection and pills.

Hello, @colleenyoung invited me to the party. My husband was diagnosed in 2010 with multiple myeloma. He is IGG lambda with a p14 deletion. He was so far into stage 3 (out of 3), that he has holes in every bone in his body and multiple collapsed vertebrae in his back.
I always thought the multiple was for the multiple ways that myeloma attacks the body but @gingerw could be right about that. Every person who gets multiple myeloma starts with MGUS first, but sadly it doesn’t get diagnosed there more often than not. Multiple Myeloma is one plasma cell going insane and reproducing,
eventually to the exclusion of other types of blood cells. There many types of plasma cells, so yes there are many types.
The first thing our Mayo doctor told him was hydrate, hydrate, hydrate! It has been good advice, he has not had a single hiccup with his kidneys and they can be the thing that limits treatments. The second most important thing I would say is get organized, tracking everything isn’t for the faint of heart.
I would love to know more about your sister and her treatment plan. I am happy to share our journey with his myeloma.
What chemo drug injections is she getting? Is your sister still working and what type of work or hobbies does she have?

She on velcade injections, dexamethasone and revlimid. Drinking lots of water. Kidneys are well. Some bones have minor lesions. How long did you husband have to take the chemo? Is he in remission? She is a teacher but retirement eligible.

Since I was diagnosed 30 years ago, my caregiver and I learned a lot and developed strategies that help. I posted my fourth short YouTube episode in a series of 4-5 minute videos of our strategies and lessons learned. The link is
https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysg
The YouTube channel is myeloma 30 years patient 007 I’ve been in remission the last decade. Stay strong, Jim