Hi all, My husband is 59. He was diagnosed with MM two years ago. He had stem cell transplant that lasted 4 months. He then had car-t that lasted 5 months. Last week, he went into the hospital and had a new treatment with Taquilamed. Out of all the treatments, Taquilamecd was the absolute hardest. I pray this lasts longer than the others. Had anyone else received the Taquilamed shots? He had so much pain and swelling. It was brutal on his body.

Cholestyramine 'Orange Julius' Recipe Do you remember having an Orange Julius? This tastes like it, and the ingredients make the resin powder slide down your throat without irritation. Recipe: Cholestyramine packet (citrus flavored) 1/2 cup orange juice (or any preferred juice) 1/4 cup half and half (for non-dairy, I use Extra creamy Oatmilk) The fat is important as it coats and smooths the resin down your throat. A low-fat option will not do that trick. I make a week's worth and store it in individual serving sizes. I can grab one, shake it, and down the hatch! If you have been diagnosed with BAM (Bile Acid Malabsorption) due to Lenolidmide, you may have found relief using Cholestyramine, too. Here is my experience: After 1 1/2 years of life-altering diarrhea, it was discovered that the Revlimid (Lenodidimide) was causing BAM (Bile Acid Malabsorption). As the small intestinal tract was not absorbing the digestive bile, it was moving on to my large intestine (where it is not meant to be) and irritating it, making it VERY cranky. Cholestyramine will now be my friend for the foreseeable future. But Cholestyamine can be irritating to swallow. After all, it is a resin and can be very scratchy, going down one's throat. I have found a solution (recipe) that works like a charm (at least for me).

Hi, I just found out that the high dose dexamethasone (40 mg iv) has caused serious lack of oxygen to my bones and some of my bones are dying. I have Necrosis of the femoral head in my hip/leg. I was having some sharp pains in my left hip/leg and had an MRI. There is nothing that can be done to reverse this. They are removing the Dex from my treatment plan. The bone in my leg/hip might just collapse. I took the Dexamethasone for about two years with Kyprolis and Revlimid. I was diagnosed in July 2021. Spent 30 days and in the hospital and left in complete remission. I had a SCT in Jan 2022 and have been in remission. I had a PET scan in Oct 2023 and was given a great bill of health. The PET scan even mentioned my bones were good showing only normal wear and tear as an MM patient (basically). I thought the PET scan showed bone damage and come to find out I am being told it does not. Which I find strange since the notes from the PET scan mention my bone health being pretty good. My Doctor says it looks like it most likely took 2 years to get to this point. I was also told checking bone density is not part of the MM protocol. The MM treatment has literally caused exactly what it was supposed to prevent from happening to my bones! I don't know at this point if other bones have a lack of oxygen and are dying too. This was super disappointing especially because I would figure checking my bones for damage /decay would be a priority and not just for active cancer. My Doctor is ordering now a DEXA Scan of my whole body as of today. I spent two years at MD Anderson and I am now at Baylor. Like you (I am sure), I have spent just under 2 million so far on treatment and basically almost the entire time I was getting MM treatment my bones were decaying anyway. Medical bills paid through insurance but this is around my bill paid after discounts. I definitely feel like this is a huge fail, plus I am at the hospital every week sometimes 2 days a week for years now. I still work and raise my son. It is a lot to manage all together but I do it and nothing all this time has lead me to believe my MM treatment wasn't going excellent. Definitely had no idea the Dex was stopping the oxygen from reaching my bones and they started dying 2 years ago! I see a bone doctor in a few weeks to see if there are any next steps I can take. Possible a hip replacement but it could be in other bones and now I suppose I'm replacing bone wherever I can, if I can. Which sounds a whole lot like what I would be doing if I did not go through all this MM treatment. A week ago if I made a post on this website, I would be raving about the care I received and how well the treatment has gone. My advice is to ask for MRI's for anything even if your bone just feels a little tender. So far, it is the only scan that shows if your bone is dying / decaying. I have not had the Dexa scan yet so I can't speak to it. I looked up at the NIH website steroid complications and when you get to their very LONG list of all kinds of complications MM is the very FIRST one listed and this is exactly what I have ( Necrosis of the femoral head Multiple myeloma patients) I honestly do not understand why this is not being checked especially since it is #1 on NIH for complications out all the complications to be listed. It has to be happening to a lot of people with MM. Look for Table 1 Chart - You'll see this info there. Musculoskeletal system Necrosis of the femoral head Multiple myeloma patients 16.7 mg/kg × 56 days (median) 7% 11.1 months (median) You can go there by using this link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8298044/ I am definitely venting here! Has anyone else had the Dex cause any bone problems and if so how was yours discovered and was there anything treatment? Thank you, Kathy

Hi, I just found out that the high dose dexamethasone (40 mg iv) has caused serious lack of oxygen to my bones and some of my bones are dying. I have Necrosis of the femoral head in my hip/leg. I started having some sharp pains in my left hip/leg and asked for an MRI. There is nothing that can be done to reverse this. They are removing the Dex from my treatment plan. The bone in my leg/hip might just collapse. I took the Dexamethasone for about two years with Kyprolis and Revlimid. I was diagnosed in July 2021. Spent 30 days and in the hospital and left in complete remission. I had a SCT in Jan 2022 and have been in remission. I had a PET scan in Oct 2023 and was given a great bill of health. The PET scan even mentioned my bones were good showing only normal wear and tear as an MM patient (basically). I thought the PET scan showed bone damage and come to find out I am being told it does not. Which I find strange since the notes from the PET scan mention my bone health being pretty good. My Doctor says it looks like it most likely took 2 years to get to this point. I was also told checking bone density is not part of the MM protocol. The MM treatment has literally caused exactly what it was supposed to prevent from happening to my bones! I don't know at this point if other bones have a lack of oxygen and are dying too. This was super disappointing especially because I would figure checking my bones for damage /decay would be a priority and not just for active cancer. My Doctor is ordering now a DEXA Scan of my whole body as of today. I spent two years at MD Anderson and I am now at Baylor. Like you (I am sure), I have spent just under 2 million so far on treatment and basically almost the entire time I was getting MM treatment my bones were decaying anyway. Medical bills paid through insurance but this is around my bill paid after discounts. I definitely feel like this is a huge fail, plus I am at the hospital every week sometimes 2 days a week for years now. I still work and raise my son. It is a lot to manage all together but I do it and nothing all this time has lead me to believe my MM treatment wasn't going excellent. Definitely had no idea the Dex was stopping the oxygen from reaching my bones and they started dying 2 years ago! I see a bone doctor in a few weeks to see if there are any next steps I can take. Possible a hip replacement but it could be in other bones and now I suppose I'm replacing bone wherever I can, if I can. Which sounds a whole lot like what I would be doing if I did not go through all this MM treatment. A week ago if I made a post on this website, I would be raving about the care I received and how well the treatment has gone. My advice is to ask for MRI's for anything even if your bone just feels a little tender. So far, it is the only scan that shows if your bone is dying / decaying. I have not had the Dexa scan yet so I can't speak to it. I looked up at the NIH website steroid complications and when you get to their very LONG list of all kinds of complications MM is the very FIRST one listed and this is exactly what I have ( Necrosis of the femoral head Multiple myeloma patients) I honestly do not understand why this is not being checked especially since it is #1 on NIH for complications out all the complications to be listed. It has to be happening to a lot of people with MM. Look for Table 1 Chart - You'll see this info there. Musculoskeletal system Necrosis of the femoral head Multiple myeloma patients 16.7 mg/kg × 56 days (median) 7% 11.1 months (median) You can go there by using this link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8298044/ I am definitely venting here! Has anyone else had the Dex cause any bone problems and if so how was yours discovered and was there anything treatment? Thank you, Kathy

Hi everyone my name is Andres, I live in South America, my mom with 67 years old lives in Cali-Colombia right now, she was in Orlando before she was told she has MM, she started with a lot of pain in her back and a lot of anemia, her hemoglobin was at 4.7 so she had to enter to ER in “imbanaco hospital” and run several exams and there she was diagnosed with MM. The doctors did blood transfusions and platelets transfusions, they started Chimo with dexamethasone and other medicine which they said it was the best treatment, after 3 cycles in that hospital we moved to a “better hospital” called “fundación valle de Lili” where they run again a bone marrow test and she was doing great, she finished the 4th cycle in this new hospital and the doctors were preparing everything for a marrow transplant because she was in perfect conditions. In the meantime she was suffering a small tingling in her right leg so she went under a Pet-Scan test and they found a small mass in the lower back which was affecting a nerve. They did very punctual radiotherapy and she started to feel better, few days later she began to have some pain at her back but doctors said it was a side effect of the radiotherapy, but at the same time she began with a lot of vomiting so she went back to the hospital and the doctors said she had salmonella, she was treated and felt better but her back pain didn’t go away, due to that the doctors started to apply hydromorphone to calms the pain combined with other medicine, my moms brain started to act weird so she was talking nonsense sense things and other side effects and screaming and confused, it was a hard time. The medics did a new and more complete pet-scan and discovered she’d had multiple masses in her back so they did radiotherapy again in different areas, her pain went off within some weeks but she wasn’t feeling so good, her platelets and hemoglobins was pretty low so they did some new transfusions and also a new bone marrow test and send her back home. Within one week and a half her status went worst, she was almost dying at home and her new blood test showed her hemoglobins dropped to 3.4 so she was taken in ambulance to ER and entered to ICU were the doctors did some new exams and more blood transfusions and platelets to stabilize her. She was in ICU for almost 3 weeks, when she got to ICU the bone marrow tests came and basically the doctor said that her case is very difficult because she has her bone marrow compromised in 55.3% and the type of mm she has in a rare one and more difficult to treat. So they started a new chemo treatment called KRD, they did it while she was in ICU but her hemoglobin and platelets are low so she has been receiving constant blood and platelets transfusions, and now they are gonna put a feeding tube since she hasn’t been eating that much since she was diagnosed with salmonella. This is a background and an explanation of everything, the interesting thing is that her kidneys, her liver, her heart, her lungs and everything is working normally and with no complications. Today the doctors had a meeting with my dad and told him that she has MM and Myelofibrosis two type of cancers at the same time, so they are running a jack-2 examen in order to know what type of chemo they need to work with. At the moment she can’t have a bone marrow transplant. We have heard of the CAR-T treatment but in Colombia they don’t have it. Hope anyone can give me a feedback.

Hello- looking for anyone managing through similiar treatment lines and how effective. 57 yo female, diagnosed Kappa Light Chain MM 8/2021, no lesions but 70% BM involvement, treated with Velcade, Rev and Dex. Successful and then ASCT Jan 2023- after my daughters wedding, good response and maintainence Rev until relapse/progression 8/2023 with spinal lesion and increase light chains- too soon after ASCT! Started Krypolis, Dara and Dex, with initial positive response but light chains back up after 2 cycles and possible additional lesion on spine. Adding Pomalyst. What has been experience with postive results with this 4 drug regimen? Moving through treatment lines so much quicker than ever expected. BM biopsies show standard risk with only one mutation in the biopsy on my first spinal lesion (10/2023). My doctors are still calling me standard risk. I don’t want to rush to bispecific antibody treatments as I am young and need that tx line for future!

I was diagnosed with primary plasma cell leukemia in October 2023. I had about 60% plasma cells circulating in my blood and about 60% plasma cells in my bone marrow. FISH test only showed IGH deletion and no other genetic abnormalities. I did VD-PACE while I was inpatient after being diagnosed. I am in my fourth round of Dara-VRD and have tolerated it well and my kappa light chains have gone from 2,400 at diagnosis to 1.16 now. I am planning on tandem SCT with my first in March. My question to the group is if anyone has similarities in that they have no high risk genetic abnormalities and how you have talked to your doctors about risk profiling. We are higher risk with the plasma cell leukemia (and have shorter OS rates) but with no significant genetic issues and a very good response to treatment, I wonder how that might factor into OS expected timelines. I have asked my doctors some of this and they really don't want to give me any specific information, which I guess I understand, but if there is good reason to believe I might have a good chance of getting more than 5+ years I'd like to know. I am 48 and have 19 and 17 kids and have talked with them quite a bit about my treatment plans, etc but have avoided any discussion on expected longevity and just said it is too early to know much on that. Hope all of you are doing well.

Has anyone been diagnosed with ONJ in the TMJ (temporomandibular joint)? A side effect of the Zometa. They are treating mine like osteoarthritis with conservative approach of splint worn 24/7, massage/stretching, and collagen and glucosamine/chondroitin to try and slow/stop the process. Hoping that I don’t lose the integrity of the joint. Curious if anyone else has experienced this and how it’s been treated.

Hello everyone, For those on Pomalyst, Centerwell foundation may be able to help with your costs..

I had my SCT in July, 2018. I went immediately into remission. I was on revlimid for about 1.5 years. I had terrible spasms and cramping that I believe was caused by the revlimid. I went off revlimid in June, 2020 and my numbers have remained stable with no sign of the Myeloma. So far I've been getting lab work every 3 months with no problems as of yet.

I'm having my second stem cell transplant at the beginning of March. It was meant to be this week, but they didn't manage to collect enough stem cells. I was given GCSF for 4 days and then a Plerixafor injection the night before the second day of collection. I was on Carfilzomib with 20mg of Dex once a week prior to this. It's only been two weeks without Dex but I feel so low. Does anyone know if this can be withdrawal effects or a response to the Plerixafor? I'm normally a very optimistic person and don't really get these feelings of sadness. Thanks.