Hi All, I apologize for my earlier statement about my oncologist asking if I wanted to drive home and call the ambulance or drive self to hospital. I thought it was a very strange question. I asked him about it at Trmt today and was satisfied with his answer. This is not for those hearing this first time. Anyway I should and do apologize for speaking too fast.

My husband received CAR-T treatment on 5/21. He was then offered an opportunity to participate in a clinical trial using Cevostamab as maintenance follow up to CAR-T. He began this on 7/20. He has had two doses with the step up dosing being used. Thus, he has only had one full dose. After the full dose, he developed a small cough which remains today. One week after the full dose, he developed a full body rash. Has anyone else taking Cevostamab had a similar experience with cough and delayed rash?

Hi all, I just received a light chain Myeloma diagnosis last week. It is scary but, it is partially a relief to finally know what has been causing my recent health problems (extreme hypertension, Stage 3 Kidney disease and strong fatigue and shortness of breath) . I'm 51 and my condition is advanced enough that my oncologist seems to be recommending immediate chemotherapy followed by stem cell transplant within a few months..... I'm overwhelmed with the different types of treatment offered and concerned about making such important life altering decisions right away although I understand the urgency to treat early. I will be going to get a 2nd opinion and see a Myeloma specialist, Dr. Waxman, at the University of Pennsylvania tomorrow and hope to learn more about treatment options. I have a couple questions..... 1) To those who have been through treatments...In hindsight, what do you wish you would have known when first diagnosed ?? 2) Is it wise to jump into chemotherapy and Stem cell transplants right away or are there other treatment options that you might recommend that I should consider first ( I realize this question is extremely difficult to answer) . Any advice you can share with a noob is greatly appreciated. Thank you!

I had Carvykti May 9, 2023. For eradication of myeloma , it was great. I am MRD negative! BUT I am still suffering with low hemoglobin, blood transfusions help some. And extremely low platelets. Blood transfusions don’t work as well for platelets because of their short lives. I have just passed my 90 days and feel discouraged about this. I am told that my marrow is healthy and these numbers will pop up! Are there others out there that have the side effects of low platelets and low hemoglobin? My white cells are fine.

my husband was on revlimid 5 mg for 3 yrs and it isn't working any more, so tomorrow he will start darzalex, dex and pomalyst....any comments about these 3 drugs

diagnosed a few months ago, responding well to Velcade+dex. Trying to learn more about MM, but overwhelmed with info. Have visited many websites and watched many youtubes about MM but come away bewildered, confused by "free light chains" the Greek letters and all the other mysteries. Question is, as we are have confidence in our hematologist, is it really important to know whether it is alpha or beta or delta or gamma? We get a report each week on the boodwork, which consists of a full page of 3-letter acronyms followed by a number. We know that RBC means red blood cells, and can see that they are running a little low, but we don't know how to read the alphabet soup of letters and numbers that fill the page. Is it really necessary to understand all that stuff if the MDs and nurses are doing their jobs? We don't have the skills to second-guess them, anyway. Thank you.

Everyone should be getting ready for the new enrollment periods for Medicare Advantage, Employer Benefit enrollment period, etc. Taking the time now to discuss with your healthcare team current therapy and anticipated changes to your therapy now so you can make sure you have the best insurance coverage for next year is important. Don't forget to consider out-of-pocket costs. Planning now can head off a lot of worries down the line.

Hi. I have procrastinated joining a group since I was diagnosed in 2018, but am so glad to have finally taken action. After a case of bronchitis and a visit to the ED because the coughing was so painful, a chest X-ray showed multiple rib fractures in various stages of healing. Things progressed from there to a MGUS dx, then on to MM, bone lesions on my femur and spine, up to having an internal fixator device placed in my left leg because of destruction to my femur. After surgery, I began treatment initially with Velcade and dexamethasone and later adding Revlimid with bisphosphonate therapy IV q 3 mos. Radiation on my spine helped with the pain and after 4 years of treatment, my MM blood panels remain stable. The journey up to this point has been a blessing as much as a burden. While spiritually and emotionally I have always been at peace; my physical state has been a challenge and some days, like today, I feel completely discouraged. Although I rejoice that this is as close to the unspoken state of "remission" as it gets; I am exhausted with the slightest activity, endure constant back pain, and am stifled by GI distress. While these side effects minimally affect my quality of life, all in all treatments have been tolerable. I did not experience vomiting or hair loss as typically shown on TV and the Velcade injections were not very uncomfortable. I guess I am just wondering if with a stable MM panel, should I continue to have this much fatigue? Although I have increased my exercise regimen, I can not go a day without a pretty long nap. I am off work now for the summer, but have serious concerns as to whether or not I will be able to return to work 40 hours a week because whenever I do, problems with my health begin to emerge. I appreciate your time and input and am praying for great outcomes for you all.

Hi, I'm new here, it's the first time I've written, I'm 51 years old and I was diagnosed 2 months ago in a preliminary way. My diagnosis is asymptomatic, I don't have bone lesions, my oncologist told me that I don't have anemia, however he prescribed me iron. He told me that since I did not have bone injuries, my pain was not associated with the diagnosis; however, I feel pain in the bones of my right arm, lower back, hips, and hands. My question is if there really shouldn't be pain as there are no injuries to the bones or is it possible that the disease causes pain for other reasons. Wishing everyone health!!!

I'm 51 years old and was just diagnosed with MM this week. I don't know much yet but, I know its advanced enough that my doctor recommended Chemotherapy right way and looking forward to Stem Cell treatment is likely within a few months. I really don't know very much yet. I have a 9yr daugher and a 8 month old daughter. I really want to be honest with my 9 year old. She is smart and can tell something is going on. I'm just not sure how much to tell her and how to go about it. I want to be honest and open but, I don't want to give her nightmares. Any advice from others who have been in a similar situation is appreciated.

Hi, Anybody out there who has experience with Johnsson & Johnsson's Talquetamab? As of 17th of july 2023 I entered the "MonumenTAL" study. A Phase III study in which a combination of drugs is being examined to see if Talquetamab is more effective when not administered on its own. I do suffer from serious side effects. Rash and an itchy skin all over my body, total loss of taste and significantly increased liver and gall blood values. Whether the treament has any impact on the disease I do not know. Oddly enough there have been no blood tests so far investigating the value of M-Proteïne and FLC. My iliac bone on the left side hurts tremendously. I can barely walk. Which is one of my favourite past times. I fear this bone ache has nothing to do with the "MonumenTAL" study. Please, do share your experience with Talquetamab. Whether it has been in a Phase 1, 2 or 3 study.

My husband was diagnosed in 2017and was told he is in remission about 9 months ago. Now come symptoms: extremely irritated stomach, loss of appetite, loss of sleep, weight loss, followed by trembling, some confusion, drooling. Got him some vitamins and appetite has improved but not much else. Is he in remission or not? Is this a new malady he must struggle with?