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

Hello, I have decided to share my journal because I believe that when we interact with others it helps to have another vision of what we are experiencing. My "case" began on January 26, 2024. When I was diagnosed, I thought that the results were wrong and that there was an error. My diagnosis was: - Plasma cell leukemia (CLL) w/t (14:16) - Multiple bone lesions related to plasma cell neoplasm - Normocytic anemia. At that time I was completely asymptomatic. If it weren't for the results, I thought that the only thing I needed was a blood transfusion to increase my hemoglobin, which was dropping in every blood test from August to November. My family and I were surprised and very confused. I have to give credit to my doctors, nurse practitioners and nurses, who have been excellent to me from the first moment. I started my chemotherapy treatment on 1/29/24. My treatment is based on Daratumumab + VRD, Revlimind and once a month Zometa. On my last visit with the oncologist, he told me that I am already in partial remission. Therefore, we have already started the fifth cycle until we reach six cycles and if everything continues without any problem, I will have the cell transplant for the month of July. It is not until now that the fact that I am sick is sinking in to me and that if I do not continue with all this my life may be very short. Really, if it weren't for all the blood results, bone marrow biopsy and the complete body PET CT, I couldn't believe I was so sick. It is only now that my body is feeling the effects of the chemotherapy. Thank God, the side effects are only now affecting me more. I am more tired physically, mentally and even spiritually. At the beginning of this new year my goals and projects were not these. I thought this was the year that was going to put me where I was going to climb higher in all terrain. But it was not like that. When I read all of your comments, my prayers go to all of you. Because although I haven't had any damage to my major organs and the symptoms I'm having now aren't that bad, it makes me think something like this can be so devastating. Not only for oneself but also for the people around us. I think the time will come when science will find more solutions for all this. I hope I can get this to live a little longer and enjoy life with my family. Not only me, but all of us that are affected by this.

I was diagnosed with mm stage 1 in 2018 and am now in remission. I want to pass on that my success is due to my team. My team is my Doctor at the hospital but also and very importantly my Naturopathic doctor. I went through my chemo, a stem cell that didn’t work, more chemo, maintenance of Rev and Dex now on no prescribed medication. All the while having visits with my Naturopath and following her advice to enhance my treatment and keep my body as healthy as possible. My neutrophils are quite low due to the past medication but that’s where supplements and strong diet click in to get the B12 needed for white blood cells. I’m not going to beat my head against the wall to say to get a good holistic doctor. I have proof that we need healthy food and supplements to get to remission. Do the work. Find a well recommended Naturopath. Mine does all her visits virtually so that makes it easy as she is an hour away. I saw her every 6 months or so when I was in treatment and now just a few times a year to be sure I’m on the right path or if I have a question about something I’ve read about. Go on the internet and read about success stories with the addition of supplements to enhance the effectiveness of your treatment. One thing I still take is Black Seed Oil or Black Cumin Seed Oil. My numbers began to get better right after I started it. I don’t take the dosage on the bottle. It’s too much and upsets my stomach. I take 1/2 tsp twice a week. Start with a small dose and once you get an upset stomach you know you’ve reached your limit. I hope this may help some people. Thanks

I'm wondering if there is anyone else out there who suffers from cluster headaches? They're probably unrelated to multiple myeloma although I have heard of at least one case where they were directly related. And in all events, it's a challenge to deal with both, and I'd appreciate hearing from anybody who's also trying to do that. Maybe we can benefit from sharing our experiences. Thanks in advance!

Rev Rash Home Remedies? After one disrupted (two shots of Zarxio/Filgrastim to get my abs neutrophils back up) first round of induction on DVRd the Rev Rash showed up over the weekend. I understand that's about when it hits. The doc is suspending the Rev again so I can detox, I've taken Claritin and am using hydrocortisone on some of the worst spots. However, given the extent of the rash, I would need to buy the cream by the quart. Benadryl isn't an option for me as it turns me into the Creature from the Black Lagoon. The section here on possible remedies for rash is a bit light so I'm wondering if anyone else here has tried off the shelf stuff, used Grandma's Secret Salve, or some poultice from the local necromancer.