Hi everyone, as we learn more about the new drugs available to BETTER treat myeloma, I wonder how many of us choosing or going to consider to continue immunotherapy of resistant and or refractory myeloma, instead of going for SCT?

I read that as a post-transplant MM patient I am now very susceptible to secondary cancers with melanoma being high on the list. Summer and sunshine has arrived and I long to be in the sun but am now scared. Does anyone know if clothing that touts built-in sun protection really works?

I feel I am a rarity with AL Amyloidosis in this community; I love to connect with anyone who shares the same journey with me; how is your heart? How are you treated? Most importantly, how are you feeling every day?

Very excited about being part of a CARVYKTI CAR-T procedure here at Phoenix Mayo -had the T Cell collection April 28- went smoothly and now they are growing them in NJ should be ready mid June

About to go on CyborD, maybe with Dara. Can I get some ideas of what side effects to look out for, thanks

Hi! My name is Tanner Thomas. I am a product manager at HealthTree. We're excited to have you join HealthTree Connect! We hope this platform can be a place for you to get answers to your AML questions and build a stronger community. You can post here to the General Discussion, or if you haven't already, join a group and post within the group. If you have any feedback, questions, or suggestions to create new HealthTree Connect groups, please reach out to me at tanner@healthree.org . Thanks for being part of the HealthTree community!

I had a SCT on 03/31/23. Since then I have struggled with low blood pressure and accompanying dizziness. I’ve been home since 04/13/23. I’m doing well otherwise and have been feeling overall good. I asked my Dr about the BP and she said it’s normal, but didn’t elaborate more. It is now the middle of May and I’m still consistently having BP’s around 90/60. Has anyone else dealt with this, and if so how long did it last? (On a side note, I drink a ton of water)

Has anyone had experience with zevor-cel? It is in phase 2 of trial and my oncologist has recommended it.

Hi I was diagnosed with MMin 2015 with Igkappa myeloma. I have had 2 SCTs and have gone thru several treatment regimes with krypolis/dex being most recent. That was working for me and I decided to have Carvykti therapy July 2022 and am currently in remission. Recently I have been experiencing some dizziness with one episode where I lost consciousness for 30 seconds my primary recommended I wear a heart monitor and it recorded I had 1 episode of my heart pausing for 30 seconds a couple of times. But this episode occurred on the same day I had forgotten to take bp med and took it later in the day and then at my usual time in the morning the next day. 50 mg. Metropolo. So was referred to electrophysiology cardiologist and he wants me to get a pacemaker. Does anyone have experience with pacemaker? How does it affect your treatment? Can you get MRIs?

Has anyone had Teclistamab therapy? I have to make a decision soon and I know about the initial first round treatment. What I' am interested in is the experience later on after several doses. Really need to get feed back to make a major decision. I have been in treatment for almost 9 years and have had several treatment types. My current treatment is Selinxor but I cannot stand it after 9 months.

Hi, I am very new to the world of multiple myeloma and have just gotten a positive MGUS result, but no further testing at this point. Because I am also newly diagnosed with osteoporosis, my doctor wants me to take bisphosphonates. I have Achalasia (disorder of the esophagus) and so cannot take oral treatment--and must have an infusion. I also have Ehlers-Danlos Syndrome (a genetic connective tissue disorder) and so have continuous, chronic dental problems and poor healing. My dentist (and oral surgeon) do not think I should take Reclast because of my high risk of osteonecrosis. I also have Leiden V Factor which makes me prone to blood clots. None of my doctors seem to know what medication I can take with the lowest risk of osteonecrosis. I currently take a calcium and mineral supplement (AlgaeCal), but don't think it will be enough. Does anybody have a suggestion for what I can take with the lowest risk of osteonecrosis?