Want to talk about Multiple Myeloma: Anyone else?

Still not back. Will check with them early tomorrow but so worried their lab will not do them in time! This is so stressful.

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?

Confusion concerning FDA recommendations.
Following 4 Moderna vaccines and Evusheld, is it recommended to also receive the additional booster for those immunocompromised and over age 50?

I wasn't clear about the move. It's to Florida. Makes more sense, right? Thanks for sharing you reply.

Confusion concerning FDA recommendations.
Following 4 Moderna vaccines and Evusheld, is it recommended to also receive the additional booster for those immunocompromised and over age 50?

You’re not alone in the confusion about the booster recommendations for people with compromised immune systems. I think there’s always going to be a mystery for any of us who have an immune system that isn’t as robust as our ‘factor installed’ version. We’re at a distinct disadvantage for not knowing how our bodies will react to something even as minor as a common cold. So then toss in this unpredictable and constantly mutating Covid virus and no wonder we’re confused. We all want protection and have no idea how many shots it will take or even if they will work for us on some level.
There’s a lot of unknowns yet about the effectiveness of vaccines on immunocompromised patients and it’s an area that requires more research and remains an evolving field.
In my opinion, since your husband has already had 4 doses of the Moderna vaccine and the Evusheld, I’d really talk to his oncologist before proceeding with any more. Since he had Evusheld it won’t pay to have a titer test as he’d likely show he has some antibodies. The problem is that there’s more to the immune systerm’s reaction than a number count on the titer. There is also the action of the T and B cells which might have some level of underlying activity. So I guess until we have better answers it’s still up to us to avoid infections by masking up, hand sanitizing, avoiding crowds, etc.. It’s a frustration, for sure! I think we’re all tired of the lack of normalcy.

Have you talked to your or your husband physician about another booster?

Hi @tml I was just thinking about you today and wondering how your weekend went. Some of the test results you’re waiting for can’t always be rushed. I know, waiting is the pits, especially when a prescription is dependent on the outcome. Hopefully the results will be in tomorrow. From @gingerw’s experience with the same drug, it’ll be shipped overnight. So I think they’ll arrive in a time for you. ☺️

I have to share something a fellow transplant cohort of mine, who is in a support group with me, posted this today on Facebook.
“Worry is a total waste of time. It doesn’t change anything. All it does is steal your joy and keep you busy doing nothing.”
It served as positive affirmation for me today. I would like to encourage you to focus on something positive and joyful for the rest of the evening, whether it’s a chick-flick comedy on Netflix, playing a board game, grab a new mystery to read.
You said you’re an avid reader. What’s your favorite genre?

Hi @tml I was just thinking about you today and wondering how your weekend went. Some of the test results you’re waiting for can’t always be rushed. I know, waiting is the pits, especially when a prescription is dependent on the outcome. Hopefully the results will be in tomorrow. From @gingerw’s experience with the same drug, it’ll be shipped overnight. So I think they’ll arrive in a time for you. ☺️

I have to share something a fellow transplant cohort of mine, who is in a support group with me, posted this today on Facebook.
“Worry is a total waste of time. It doesn’t change anything. All it does is steal your joy and keep you busy doing nothing.”
It served as positive affirmation for me today. I would like to encourage you to focus on something positive and joyful for the rest of the evening, whether it’s a chick-flick comedy on Netflix, playing a board game, grab a new mystery to read.
You said you’re an avid reader. What’s your favorite genre?

Well the myeloma labs were posted and there is some good news. Numbers are down so hoping with a few more months perhaps another remission opportunity! Yes worrying was wasted!!!