HealthWell Foundation still has grants of $10,000 available for Copay/Premium reimbursement. If you haven't yet applied in the last 12 months, do so. Income cannot be more than 500% of Federal poverty level.

Anyone on Medicare that ned additional funds to support their copay and premiums and have not already gotten funds in 12 months can go to Healthwell and apply for a 12k grant. Income must not be more thanb 500% oif Federal Poverty Levels

Anyone on Medicare that ned additional funds to support their copay and premiums and have not already gotten funds in 12 months can go to Healthwell and apply for a 12k grant. Income must not be more thanb 500% of Federal Poverty Levels

Hi Everyone! At the end of October 2018, I was diagnosed with Multiple Myeloma (Lambda light chain). Since my stem cell transplant on April 28, 2019, I have been taking 15MG Revlimid 21 days out of 28 days a month and receiving Velcade every two weeks as a maintenance treatment. It was about 6 months ago that my Phosphorus levels started to decrease below normal levels, so my specialist prescribed Phospha 250 Neutral to take 3 tablets a day. However, this did not increase my levels, so I was instructed to take 6 tablets a day with no improvement. After seeing my nephrologist, I was told that the issue with my phosphorus levels was caused by my kidneys disposing of phosphorus due to the heavy chemotherapy I had prior to my transplant. The doctor recommended I take two tablets of Phospha 250 Neutral three times a day and be tested for phosphate levels periodically, and when they are low, I should get Phosphate infused. Would anyone be able to tell me if they have had/have similar issues and how they resolved them?

I have a support group member who had a CAR-T about 9 months ago. His myeloma numbers are 0. But over the past month or more, he is "losing" blood, or probably not making enough blood. He is anemic, Hemoglobin down to 7 and 8. Very tired, not much appetite. He has had a blood transfusion, but his drs are not sure what is going on. Has anyone had something similar? Any thoughts?

I did something very “not so smart.” After my radiation treatment last week, I felt a great deal better (80%) with pain on my spine. For whatever reason, I decided, without help from my doctor, to take myself off of about (75%) of my pain medications; OxyContin, Oxxcodone, and gabopenton. I was heavily medicated. The pain was debilitating for 5 months. Well needless to say, I went into massive withdrawal. It was one of the worst experiences of my life. I had every symptom known to man. I did meet with my doctor after four days and now I am on an appropriate plan. 8 days later and I am still very shaky and at times nauseous. My simple advice……Don’t ever do this!

Xgeva - concerns about bones after treatment. Worth it? Since myeloma seems to affect by bones most my doctor started me on Xgeva but I had some nausea so missed my last treatment. I understand it helps with the destruction of my bones from the myeloma while I am on it but am very concerned of it's likely hood of fractures in the spine once I stop. I was told that I would get one dose of Zometa at the end to help with this. So my question is putting up with the nausea and chance of fractures after worth it? What side effects has anyone dealt with and has anyone been treated with Xgeva and after stopping have increased fracture?? Thank you for your inputs

Anyone else have this?: There is a monoclonal protein present overlying transferrin in the beta region that measures between 0.8 and 1.3 g/dl with suppression of polyclonal immunoglobulins. Immunofixation electrophoresis is consistent with the previously identified IgA kappa monoclonal gammopathy. The monoclonal protein cannot be accurately measured with this methodology. IFE also shows a small free kappa monoclonal protein (monoclonal protein #2) in the alpha-2 region. I ask my Dr and am just told the disease is "progressing"?? Since for 10 yrs I've watched the mspike, now not sure how well the meds are working since light chains are very high. Am on dara faspro and Pom this year and not seeing results but have to keep stopping the Pom due to low blood cells...Keep reading about other new meds like Ventaclave, etc?? My beta 2 is very high and i wonder what can bring that down? Thanks and happy holidays.

I have been put on Bactrim (sulfamemethoxazole and trimethoprim) anti bacterial pills after ASCT. I am taking this drug three times a week, on Mondays, Wednesdays and Fridays. I am supposed to be on it for at least two months but I think I am getting weird side effects from it. I’ve been on it for a month now, and I have noticed that by Friday there’s tingling in my hands and feet, and I think I am getting some muscle weakness and slight dizziness as well. After being off it for Saturday and Sunday, some of the side effects are lessened, but then get worse by Friday. Has anyone experienced this with this drug?

So I now have no hair since ASCT a month ago. How long does it take to get some hair? Even just an inch?

I missed Motivation Monday! Let's talk about it on Tuesday.