For those of you are enrolled in currently or going to enroll in ACA Affordable Care Act (Obama Care) be aware that the premium subsidies are set to expire in December. There may be changes coming prior to that but no one yet knows. If the subsidies expire, the cost of your insurance premium will increase dramatically. You need to be aware of other options. The Medicaid options are probably going to be limited as well.

Hi all, I was diagnosed April 2024. I have a clot on my lung and i had pneumonia at the time thats how i got diagnosed.My paprprotein was 41 when diagnosed, bone marrow came back below level of treament, they sent me for a pet scan and that came back with bone damage and lesions so I started treatment. I was also classed as high risk as he said my fish test came back and I have 11q 13 gain, to which some people have said that isn't high risk. I can find much on it. I had 4 cycles of drvd and cyclophosphamide before my harvest I then had a stem cell transplant in December. My paraprotein went to 20 after 2 cycles of treament but stayed at that for the further 2 so I only had a partial response. I went into stem cell with my m spike at 15 the cyclophosphamide took it down to 15. My reading in Jan was 6 and they took bloods last week and I has gone up to 19 so he said it didn't work, doing a bmb tomorrow and a pet scan then if that comes back clear. He said I will start on KRD treament. I'm 37 years of age female and I'm wondering what you think of this. Thank you has anyone had a sct and it didn't work? See less

Hi all, I was diagnosed April 2024. I have a clot on my lung and i had pneumonia at the time thats how i got diagnosed.My paprprotein was 41 when diagnosed, bone marrow came back below level of treament, they sent me for a pet scan and that came back with bone damage and lesions so I started treatment. I was also classed as high risk as he said my fish test came back and I have 11q 13 gain, to which some people have said that isn't high risk. I can find much on it. I had 4 cycles of drvd and cyclophosphamide before my harvest I then had a stem cell transplant in December. My paraprotein went to 20 after 2 cycles of treament but stayed at that for the further 2 so I only had a partial response. I went into stem cell with my m spike at 15 the cyclophosphamide took it down to 15. My reading in Jan was 6 and they took bloods last week and I has gone up to 19 so he said it didn't work, doing a bmb tomorrow and a pet scan then if that comes back clear. He said I will start on KRD treament. I'm 37 years of age female and I'm wondering what you think of this. Thank you has anyone had a sct and it didn't work?

I am multiple myeloma patient and had Bone Marrow Transplant three and half years ago. I started with Lenalidomide 10 mg initially for 6 months and then 5 mg (3 weeks on and 1 week off) till now. Four weeks back I had undergone gall bladder Cholecystectomy. The biopsy report showed intestinal metaplasia. Could it be because of Lenalidomide? What is the chances of intestinal metaplasia developing into Hepato-biliary cancer?

Good Day Everyone, I'm new to the page. I was diagnosed with multiple myeloma last month.

Hello, and thank you to whomever for creating this platform. I have what I consider refractory IGG multiple myeloma. I was responsive to vRD but non responsive to autologous SCT. I tried to join the EXCALIBURR trial (for any who is non responsive or have progressed disease post SCT I suggest you look into it a-sap). I however could not participate because you must have all your initial screenings complete within 120 days post transplant :( I was 129 at my first trial appointment and no one knew. I am reaching out to ask if any of you know of any cutting edge research / clinical trials I might be able to participate in outside of the standard of care. I start low dose Revlimid and Darzalex tomorrow but am hoping to try something else that could help me achieve Complete Remission (not just maintain a VGPR). Thank you in advance!

I have been on treatment for four months for MM and next they want to do stem cell transplant. I recently was in the hospital for pneumonia and had a bad experience being hospitalized. IT's making me question the stem cell transplant and all the time needed in the hospital. Plus I dont think doctors are being truthful about the recovery process and how long it will take to feel bad to normal. Is SCT worth it? Seems like the MM comes back either way. Thanks for any insights.

Hi, I'm new to this page but I have multiple myeloma and have been in remission for 11 year's. I read the patient story about John and Ann Bailey and would like to connect with them. Any suggestions on how I can do that? Sincerely, Barbara Mauro

Hello, after 8 months of my SCT my MRI shows a new ill , Dr suggested Car-T but I want to get a different treatment, anyone relapse a short time after SCT , and what treatment they received. Thank you

Hi, I have MM 9 1/2 years. Been through tandem stem cell transplants, usual drugs, car-t, Teclistamab and Tequalamab. And recently relapsed. Anyone in the same boat and what treatment are you getting. Is it working? John

Prior to diagnosis (one year ago in 1 week!) I was lifting heavy, had even gained 10 pounds of muscle in the year before diagnosis. SCT was 3 months ago. I am walking daily with a weighted vest, but now have this very round belly that I would like to get rid of, and get myself back into shape. When I was lifting, between sets I would jump rope. Several sites recommend staying away from jumping rope because of the impact, but I think with proper form it's very low-impact. Anyone else here jumping rope? It's such an efficient exercise, I'd love to get back into it.