1. < Blood Cancers & Disorders

Want to talk about Multiple Myeloma: Anyone else?

Posted by Frazer 1 @frazer1, Apr 11, 2012

Asking anyone who is going thru this experience to share any pro's or con's of this disease. As of now I'm in MGUS, will find our next week if it has progress to Smoldering Myeloma.

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Mentor
Lori, Volunteer Mentor | @loribmt | Apr 4, 2022
In reply to @tml "Still not back. Will check with them early tomorrow but so worried their lab will not..." + (show)
@tml

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

Jump to this post

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?

REPLY
2 replies
jam5 | @jam5 | Apr 5, 2022

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?

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3 replies
cwh | @cwh | Apr 5, 2022
In reply to @loribmt "Hi @cwh I seem to recall seeing that someone didn’t qualify for a SCT for MM..." + (show)
@loribmt

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?

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

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 5, 2022
In reply to @jam5 "Confusion concerning FDA recommendations. Following 4 Moderna vaccines and Evusheld, is it recommended to also receive..." + (show)
@jam5

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?

Jump to this post

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?

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 5, 2022
In reply to @cwh "I wasn't clear about the move. It's to Florida. Makes more sense, right? Thanks for sharing..." + (show)
@cwh

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

Jump to this post

Ha! Yes! Moving to Florida from Iowa has you heading in the right direction to avoid those long, painful winters.😂

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Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 5, 2022
In reply to @jam5 "Confusion concerning FDA recommendations. Following 4 Moderna vaccines and Evusheld, is it recommended to also receive..." + (show)
@jam5

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?

Jump to this post

@jam5 My oncologist told me just last week we will "play it by ear". I received Pfizer vaccines 1/23/21 and 2/14/21, boosted with full dose Pfizer 8/19/21, and Evusheld on 2/17/22. He feels we are doing all we can. He also encouraged me to consider my health when moving about this crazy world, and decide what will be best for me. I am actively on chemo for my mm, plus additional health issues.

Masking up, hand washing, avoiding large crowds, keeping stress levels low are key on my list. While the FDA will provide guidelines, I agree with @loribmt that your medical team, who knows you best, will be the best source to help you make a decision.
Ginger

REPLY
jam5 | @jam5 | Apr 5, 2022
In reply to @loribmt "You’re not alone in the confusion about the booster recommendations for people with compromised immune systems...." + (show)
@loribmt

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?

Jump to this post

Thank you for you response
Judy

REPLY
tml | @tml | Apr 5, 2022
In reply to @loribmt "Hi @tml I was just thinking about you today and wondering how your weekend went. Some..." + (show)
@loribmt

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?

Jump to this post

Seems what was sent was okay so I should be getting it by Friday. I wasn’t certain what they needed and the myeloma tests are sent to Mayo to process which adds to the time.

I am reading spy novels now although like to read series so the next one is waiting but have finished all the ones in my queue so guess will have to find more or another topic.

A bit sad as got the notice for the bike/barge Amsterdam tulip trip I booked in January 2020 and finally cancelled. Sigh! Fine before I knew I had this but always hoped somehow we could still take! Since so much myeloma damage in the past 4 months, cannot even bike so just as well.

Hoping for some good numbers when those tests come back. Guess I have not really faced up to the actual reality of the myeloma. I know I need to be more positive and try to focus elsewhere but so hard for me. Did the NYT Sunday cross word puzzle! That took a few days! Have yet to try and paint or journal.

That is why I retired later than I should have as it filled up my time and mind!

I guess I did worry for nothing as it did not come down to the wire as I thought it might!!!

I was reading up on transplants again and saw the 100 days of isolation to recover one ‘s immune system!

REPLY
1 reply
tml | @tml | Apr 5, 2022
In reply to @loribmt "Hi @tml I was just thinking about you today and wondering how your weekend went. Some..." + (show)
@loribmt

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?

Jump to this post

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!!!

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 5, 2022
In reply to @tml "Well the myeloma labs were posted and there is some good news. Numbers are down so..." + (show)
@tml

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!!!

Jump to this post

Yesss! This is wonderful news! I’m happy and relieved for you!
We’ve all wasted time worrying, alas, it’s a trait of us mere mortals. ☺️

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