I’m day 20 following 2nd ASCT, home but absolutely exhausted. I’ve never felt so tired. Does this pass? Thanks.

Hi there, as a newly diagnosed myeloma patient in the Netherlands I personally prefer the option of delayed transplant instead of upfront transplant. Giving quadruplet therapy the chance to do a good job and hopefully reach Mrd negativity without transplant. My myeloma specialist in the Netherlands says this is not really an option in the Netherlands yet. He says it’s more an option in the United States. So I have some questions about this option for my fellow patients in the United States: 1) Anyone having experience with this option? 2) If so: How many cycles is the induction therapy when you choose this option in the United States? 3) What is maintenance therapy when you choose this option? 4) What are the criteria for starting the transplant when it is needed later on? 5) Do you start induction therapy again when you are on maintenance therapy and get a relapse or do you go straight to transplant when this is needed? Hope to hear and learn from your experience in the United States with the option of delayed transplant. Wishing all Of you all the best.

I had CAR T first (I am a long time survivor, as my med was not working well so the CAR T. I have had 4 lines of therapy) CAR T did not work for me. I then was given Teclistamab. this did not work. Now Dr is recommending talquetamab. I need to travel to receive the shots after hospital stay, about 2 hours each way. I am not adverse to this if it works but CAR T and teclistemab did not work t all for me. I am now trying to decide on talquetamab or a treatment to include Selinexor etc. all oral. I wonder if a break from Bispecifics would be an advantage in that my T cells would have some recovery. Plan B so to speak is Selinexor, Dex and Pomalidamide. SOme tough choices here. The side effects of Talqueamab are difficult. Any thoughts? I have searched Health Tree hoping to get some thoughts that will guide me. Thankyou!

Is there an app for healthtree? I tend to forget about the site until I get a notice about something.

Does anyone on here have IGM Multiple Myeloma? I was diagnosed at the beginning of January 2018. Originally the doctor thought is was Waldenstrom but the bone marrow biopsy confirmed IGM MM. It took several months to get it under control we finally tried Darzalex and that seemed to be working at the moment.

Diagnosed Jan 2017, just before 60th birthday. As I have said in another post, I had 3 bones in foot, 2 in clavicle, forearm and then 1 (then 3 more) vertebrae fracture. Finally figured out I had MM, and had Lambda of 12,650! After literally 1 cycle of VRD, down to 200, and eventually remission for almost 5 years! Did ASCT ABOUT 3 month in, at remission. Then on maintenance revlimid pill. We didn’t do MRD back then. My first MRD was clean, a couple of years later, then when it started rising it was my first signs of coming out of remission. Since then, I have done combinations with Dara, Kyprolis, Pomalyst, alway the dreaded Dex, etc. I am now going into CarT cell Arcellx trial. I go to a wonderful MM specialist at UTSouthwestern in Dallas, TX - a couple of hours from home. They currently offer two other CarT cell therapy, and have seen one have less serious side effects but hasn’t proved to hold long term. The other more harsh side effects. But if it works, holds longer. This trial will hopefully be easier on me, AND hold me long term! My doctor has always said that the longer I can stay alive, the more and better options they will have to treat MM - and maybe someday a cure. Back to CarT cell, I have read horrible things about the first couple of weeks after the infusion. Comatose, speechless, (husband may enjoy that), even ending up with Parkinson’s. These are with the other two, so far not the Arcellx. This trial started in 2019. In phase one, one patient fatality because too much cancer killed off too fast and was toxic to patient. They are now in Phase 2 and seem to have a handle on amount of cancer you can have or not have to avoid that. ANYWAY, anyone that has done CarT cell, any of them, I would love to hear your experience in detail! And especially if you have been in the Arcellx trial!! Side effects, getting energy back (seemed forever with SCT) , how long in remission (so far). I’m excited that if it works, it will be my first time not on chemo or some type of maintenance pill in 7 years! More excited that I am still here after 7 years! Thanks in advance!!

Hi All. here after SCT 3+_ years ago and in remission for that time. Oncologist wanted to perform a Base Line PET Scan and I popped positive for lesion in collar bone. Received 1st treatment of Darzalex FastPro/Revlimid/and Dexamethasone. 2nd day after treatment came down with pretty severe pain in the collarbone area. Has anyone received this treatment regimen and experienced moderate to severe pain? I'm thinking there is a battle going on between the lesion site and the chemo drugs causing the pain? Such a thing? Pain under control but 1st day was NOT fun. Thanks all! Mike Bruce