Want to talk about Multiple Myeloma: Anyone else?

😂😂. No kidding!!

My husband won't do the transplant. How are you doing without it?

Hi @cwh Would you mind telling me a bit more about your husband’s medical situation? Does he have multi myeloma or another blood cancer that requires a bone marrow transplant? What is his reasoning for not going through with the treatment?
I’m sorry, but I don’t quite understand what you meant about “How are you doing without it?” I’ve read through the previous post and you’re leaving me with a mystery. What am I doing without? ☺️

Hi Lori,
I thought someone mentioned not having an SCT for multiple myeloma, which my husband has. Moving between Iowa and Florida soon, they would have to collect in Florida and he's had 9 cycles and some difficulties with meds. He may have an SCT but not soon.

Hi @cwh I seem to recall seeing that someone didn’t qualify for a SCT for MM and maybe that’s what you saw too. It’s not always warranted and unfortunately, now everyone is a candidate for the procedure. I did have a bone marrow transplant from an unrelated donor. It appears that most people having a stem cell transplant for multiple myeloma are able to use their own cells, as in the case of your husband. It’s still not an easy few months of recovery, but has fewer side effects such as rejection or graft vs host disease because they are the patient’s own cells. So I do hope at some point your husband is able to continue with the treatment. It can help give some longevity and a better quality to life.

So you’re moving from Florida to Iowa? Seems like you’re going the wrong way! The weather up here in the Midwest is still winter. We have minus 5 this morning in northern Wisconsin and it’s almost April. 🥶 You know my next question…why?

Lori, have been doing the daily shots but am now black and blue con both sides. One time it bled. Worried that this is a long haul and I am having these reactions only one week or so in…,

Oh, I remember the black and blue belly areas. Not very attractive, but it’s a pretty common side effect. No bikinis for you this summer! 🙃
I just read up on Enoxaparin and it has a good safety and side effect profile. Much kinder to the system than Warfarin.
There can be some bleeding at the injection site. Remember, it is thinning your blood to help prevent blood clots…which is more of a worry than tummy bruises. I promise, they’ll fade.
You may not be on it long term because it is being used in conjunction with the Revlimid and steroids. Are the steroids being tapered?
Truly, I know the frustration of being on so many meds that have side effects. I was a walking pharmacy after being diagnosed with AML and then the transplant. Before that, all I had in my medicine cabinet was Vit D3! So it was one heckuva shock to find it necessary to have a huge pill box! At one point during treatment, my husband counted; I had 18 IV bags piggy-backed feeding into 2 ports! You’re fighting a blood cancer and it’s going to take some strong meds to move you past this. Basically, inside your body is a war zone right now and you need the proper artillery to win this battle. ☺️ There will be some collateral damage. But our bodies are remarkable in resiliency. To look at me now you’d never know the toll those meds took at the time. But they got rid of the cancer and gave me a second chance at life. You’re shooting for that same goal!

When’s your next doctor’s appointment?

Did see that Enoxaparin is better than Eliquis guess just how it is. Take the dexamethasone for 2 days around the velcade. Worried about getting my next shipment of Revlimid since the pharmacy said cannot reorder online plus might want labs before reissue. Not scheduled until the 7th for myeloma labs and should begin the next 21 days in the 8th!!! Ugh. Nothing is easy! I too took very little! I am stunned to look at all the pull bottles lined up!!! Just hoping for good results soon!!!

Cannot imagine 18 bags!!! Must have been a challenge. Know I need to be patient but the fact that I should have had the transplant last October galls me. I feel as if all this should have been unnecessary. I know, I am where I am…I need to follow your example!!! I know it is a slog really…a marathon not sprint!

I can feel your frustration and I know this all seems to be moving at a snail’s pace. A slog, yes that’s a really good term!
I empathize because this is one of those situations that you just want behind you and you’re helpless to make it move along faster. But it is moving, in the right direction. So now’s the time to use some diversion tactics to wait it out! Didn’t you say your husband is an artist? There must be some art supplies around. Grab some waterproof pens, watercolor, brush and paper and let your creative side take over! The past few days I made a much of paper beads. Then yesterday I made journal for a friend’s birthday and used some of my silly beads to embellish it. Thankfully she’s not a perfectionist either! 🙃 What’s your creative outlet?