Has anyone considered HRT with transdermal estrogen and micronized progesterone after ASCT? Wondering if feedback from your myeloma doc is supportive or not? Mine wants me to take a blood thinner with the HRT due to combined blood clot risk with Revlimid (10mg maintenance). Modern HRT doesn’t have the blood clot risk it used to, so I’m concerned she’s being overly conservative based on old data. I don’t want to take any more meds than really necessary.

Hi All I was just diagnosed with SMM a month ago. I live under a mile from a farm that uses pesticides weekly - they spray, I called and asked they said they do it late at night or early in the morning. I don't know what to do short of selling my house. Outside of closing my windows on the dates they spray any advice? Anyone in a similar circumstance?

Hello all! Was diagnosed with IgA Lambda MM in July 2023 and underwent eight cycles of VRD. Am now in remission. Unfortunately developed peripheral neuropathy in my toes, likely from the Velcade/bortezomib, and have been taking gabapentin, but to no avail. Any suggestions?

Newly diagnosed low risk SMM. Getting looked after at Dana Farber in Boston. I’m truly devastated and shocked by the diagnosis. I feel like I can’t plan for the future and have sunk into a depression. I have an 11 year old that I fear I won’t be able to be there for. Watching and waiting approach feels like absolute mental anguish. Should I try to find a clinical trial? My family thinks since it’s low risk I’m “crazy” for not being able to mentally move on. I don’t know really what to do next.

I am on Acyclovir and have been since my transplant. Is it others experience to be on it indefinitely? Also, has anyone gotten the shingles vaccine? I was under the impression Acyclovir was a preventative for shingles.

Hello. As of 2024-05-07 I haven't yet been formally diagnosed - still undergoing a battery of tests. It looks to me that it'll be either IgA kappa smoldering MM or active MM. I have no symptoms yet. Suspicion of a plasma cell dyscrasia was triggered by blood test results for an unrelated issue I was having. - My m-spike on 2024-02-13 was 1.29 in the beta region of the SPEP test and rose to 1.39 on 2024-04-09. Gamma region is low. - My FLC ratio is aggressively moving upwards. It was 45 on 2024-02-13, jumped to 72 on 2024-04-02 and then jumped again to 89 a week later. If this trajectory continued as expected, I'm past the dreaded 100 level for MM. - My IgA level is around 2200 mg/dL as of 2024-04-09. - Bone marrow biopsy done on 2024-04-02 showed neoplastic plasma cells that represent 15%-20% bone marrow cellularity. - Urine immunotyping done on 2024-04-09 shows two free kappa paraprotein peaks. - Urine protein electrophoresis done on 2024-04-09 shows two m-spikes: #1 is 4.8% and #2 is 3.1%. Interpretation on the report is, "Two peaks in the beta region consistent with paraprotein peaks". - Bone density test done on 2024-04-12 showed osteoporosis in lumbar region. I start receiving Xgeva shots 2024-05-08. - PET-CT scan done on 2024-04-17 showed no lesions and no sign of malignancy. - As of 2024-05-07, still waiting on the FISH / cytogenetic analysis report(s). Calcium level is normal. No sign of renal insufficiency. No anemia. No bone lesions. While not yet committing to a diagnosis, my hema-onco said treatment in my future is likely. He wants to do some more blood work to establish a definite trend in the numbers and to see if I reached that myeloma defining event of FLC ratio >= 100. When the time comes for treatment, he recommended an outstanding myeloma specialist at Mount Sinai. I'm confident that I'm in good hands.

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

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