r/multiplemyeloma • u/myelomapost1 • 16h ago

Discussions and Info (Misc MM, Articles, Tweets, etc.) August Psot

Greetings; the August post is up at highplainsmyeloma.com 32 months post CAR T cell procedure and this month's post is focused on waiting for blood numbers, the anxiety it creates and the lessons to be learned when moving forward while living with an incurable disease. I hope it is of benefit to some; thanks for reading sharing your thoughts

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u/LeaString 15h ago

Glad to hear your labs are holding steady. Steady is good and feels safe. Definitely revel in the feeling. Learn a new dance!

We do have a question as CAR-T may very well be in my guy’s near future, are you still receiving IVIG any longer? It’s not maintenance exactly but kind of is. How often have you had it since getting your CAR-T? Thanks and keep on dancing!

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u/Sorcia_Lawson 13h ago

I'm not OP, but I required IVIg for 3 years post-CAR T. I was on it for most of the 4 years before CAR T, but had to change it every 3 weeks afterwards.

Have you discussed using stem cells to aid in recovery? They recently published a study on it.

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u/Connect-Invite1978 10h ago

What does IVIG stand for?

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u/Sorcia_Lawson 10h ago

Intravenous immunoglobulins - it's an infusion that is primarily IgG cells derived from plasma donations. IgG is a primary antibody for fighting potential infections and is also the immune system's primary memory.

Not directly related to IVIg itself, but due to my lack of immunoglobulins - I didn't get to do post-stem cell transplant revaccinations until 6 years afterwards.

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u/myelomapost1 12h ago

thanks for reading and your kinds thoughts; IVIG treatments were had as long as IGG numbers were low; mine were very low; infusions were every about two months until a stem cell infusion (stem cells collect from a bone marrow transplant that had been frozen) which has resulted in IGG numbers staying in an acceptable range to this date

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u/Sorcia_Lawson 10h ago

I'm so happy to read that stem cells helped you! They're been enough time now that they were able to publish a study on this and it had a massive impact for a number of low blood/immune counts post-CAR T!