Want to talk about Multiple Myeloma: Anyone else?

Hi @patientpainter, for some reason I didn’t catch this reply of yours before! I’m sorry for the oversight. Welcome to Connect. I see you have MM and had cells collected for a transplant.
Since this reply is now a couple months old, you would have had your transplant by now. How did you do? How’s recovery going for you?

Hi thanks Lori- the transplant ( autologous) went well, and I'm two months out. Very little hair has returned ( fell out completely at 15 days, though very glad eyebrows and eyelashes stayed), but energy has!- though I suspect that once I start up the maintenance drugs( Revlimid, bone strengthener, etc.,) there will be some more fatigue again. Still, this will be better than pre-transplant!
I will have a bone marrow biopsy in September, to see how it all is. And all the childhood vaccinations again-, at six months out from the transplant.
I still have a sore back every day and sore ribs some days- and wondered whether that will ever get better. Anyway it will be a struggle with side effects of all medications, for life now. But I'm enjoying getting back to a once a month instead of weekly doctor's visit...and I'm excited (and grateful) to hear of so much research being done into MM right now, and some truly promising new treatment under study, that may become options when my remission ends...:this is a pretty lucky time to have developed this disease, compared to just a few years ago.
I wish all my fellowsufferers the Best of luck, in finding their own paths to strength and extending their lives. And I am awed by the myeloma doctors I have encountered, and their interest and ability in juggling so much complex information! Thank you thank you, is all I can say- except for"Keep it Up, Please!!!"

I’m very happy to hear you’re doing well and getting some of your energy back. The hair, from my experience starts coming in between 3-4 months and then look out! LOL it grows like crazy. I’d had AML and then an allo transplant so all those months of chemo had me hairless for quite a while.

All the vaccinations again are a real treat. 😂. I went through that too. No side effects but boy, I had sore arms after each appointment…many of the vaccinations are 2-3 phase, meaning you get the starters, then boosters at 3 and 6 months, depending on the schedule you’re given. Ice packs worked on each upper arm worked well to quell any swelling.
I’m with you, every day is a gift and we’re so grateful for the amazing doctors we’ve encountered along the way. ☺️

That's exciting about the hair! I hope that'll be the case- and thanks.

For painless vaccinations: Let your arm drop, be a dead weight, at your side. When your muscles are totally relaxed there will be no pain and your arm will not swell.

My nurse always says, “Ben, I wish I could have you here each day to coach my injection patients!”

Well, here you go. You’re welcome. 😎

Good suggestion, Ben. Completely relaxing the arm during an injection definitely helps and keeping the arm moving after the shot helps too. However, the very act of injecting the serum in the arm stretches the muscle fibers and triggers an immune response, leading to temporary inflammation and discomfort. Some shots can react with the body more than others such as the tetanus vaccination.

Those of us having a stem cell transplant require having all of our childhood, adolescents and adult vaccinations re-administered. I was having 9 vaccinations at a time over 2 arms. No matter how much I relaxed icepacks were my friends for the first couple hours. 😅. I know why babies are cranky after their vaccinations.

Lori, I am well educated, have given myself weekly injections with 23 gauge needles for almost 40 years, and am sadly quite aware of the revaccination process undergone by those with MM. I stand by my words.

Note, however, that I do not allow nurses to inject me multiple times at sites within close proximity to each other.

Ahh: this is good advice!: If it is possible to convince them to separate vaccinations more, with separate visits. A lot more trouble for everyone. I did fight for that for my baby son, 27 years ago etc!- so why don't I feel comfortable asking for that for myself, and standing my ground??!- Partly because I know how busy and stressed all the nurses and doctors are, with the patient load they have ( I am in NYC, which makes you feel like a tired ant in a booming anthill, often!)- so if it works for them and their schedule, and it isn't dangerous, I feel I should follow their lead. I could definitely be wrong though( or rather, They might be!) and it might be worth it to insist on separating the shots more. Hmm.

Thanks for the reminder to Relax the arm: that is one thing I have never done!- and I'll certainly try it.

Yep, I learned to do that, also, Makes a huge difference! Took a concentrated effort for me to relax. and, I usually try to talk about something unrelated to the injection. Even something as simple as complimenting the nurse on the color of her uniform that day.

In my old age now, I sometimes talk, and remind myself out loud to relax my shoulder and arm before an injection. Of course, I have to do that when I am using a curb also, to step right foot first, since left leg/foot has no feeling. More than once I have taken a tumble, even with my cane!
Ginger

PatientPainter, that's an excellent question: We feel comfortable asking for our kids, so why not for ourselves?

I just allow my arm to hang - really hang, as if it were just a puppet arm. Once, a nurse came at me with a needle before I was ready (she probably thought it was best to 'get this over with') and boy did I pay! The injection was painful and I did ache afterwards.