Hello everyone I did a SCT in September and I must say, I recovered very quickly. I was then put on Lenalidomide 25g after blood tests my oncologist was worried that my white blood cells were low and lowered my dose to 15g. After the blood works they were still low and I'm now off the meds until the 7th of February when I will be doing blood work. I'm a bit scared of the cancer coming back. Has anyone experienced this 😳

I am still in the smoldering stage White cell low, red cell still in a normal range on the lower end and hemoglobin still in normal range. Latest blood tests showed extremely low ferritin. Doctor advised an iron IV. It temporarily helped with tiredness, dizziness etc. My doctor wants me to have a colonoscopy and endoscopy looking for a slow bleed. Has anyone else experienced this? I sure need advice. Thanks.

Hello! I was diagnosed with SMM 3 years ago. My labs have steadily increased (worsened ) during that time. I know so much goes into determining when and if you need treatment. Presently I am not in treatment. My question is has anyone out there received any kind of treatment to increase your immune system? I am constantly getting sick. Since October Covid twice, treated for pneumonia twice and sinus infections in between. It’s so tiring!! I was curious if there’s anything out there for us that are not MM yet…. Thank you, Carla 😊

Hello All, Please be aware that the IRS will halt processing any tax returns between from Feb 26th through March 14th. Please keep up with Financial Assistance organizations and grant opportunities.

Since being diagnosed with SMM I've experienced tooth sensitivity/pain when chewing. It feels like I have multiple cavities (I was just given a clean bill of health by my dentist recently). Has anyone else experienced this? I researched this but have not found tooth pain while chewing as a symptom of SMM.

My husband has been on Cytoxin/Dara/Dex. In December his Oncologist switched him to Pomalyst/Entricity/Dex. He had one treatment with all three, but his platelets are low, so Dr. discontinued Pom. So he is now only on Emplicity and Dex, until further notice. We really do not understand if this is of any use. Dr has not talked with us about this. Sending him a message when I finish this. We really do like him, have no thought of changing, but information is crucial. Husband had a port put in , because nurses had a hard time finding 'good veins'. He was given two bags of platelets at time of placement. Next day was treatment day. His platelets rose from 31 to 44 at that time, even with the added platelets. Have asked numerous people nurses, doctors how to increase his platelets. No answers. First what do you think of only Pom and Dex, and does anyone have an idea how to increase platelets?

My mother was diagnosed with lambda light chain multiple myeloma in December. After 2 cycles of RVD treatment, her lambda/kappa light chains are within normal range. Doctor has started 3rd cycle and is recommending autologous stem cell transplant post that. I would like to understand from the community as to how they made a decision whether to proceed with the transplant or continue with RVD treatment only. My mother is quite apprehensive about implications of full chemotherapy as part of transplant, and of course it being a major process which will take longer time for recovery. Thanks!

My father is under VPD and he has his back pain He takes his Bortezomib on Sundays with 20mg Dexa. Pain normalises for 3 days. But then picks up for the rest of the week. And during these days when he has pain, he feels very lethargic/fatigued. We do the weekly blood profiles on Sundays and all parameters are always normal. Could someone from his experience suggest, what might be the culprit for this fatigue- is it dexa effect, bone pain related as he does not feel like doing anything then.? Also, what solutions do you advice to manage the pain and this fatigue. He takes tramadol sometimes for this the pain. This has become a cycle now. Any quick remedy to fight this pain if it is unbearable. Many thanks

Just feeling awful, and blaming it on MM and chemo. This week was week off of Revlimid, and still feeling awful. Slowly figuring out it is not the MM or chemo making me feel like a can of busted biscuits. BP in the a.m. is around 100/57. Eyes sticky all of the time. Problem getting out of bed in the morning. I am on a calcium channel blocker called Verapamil. From what I am studying it is the Verapamil making me feel lousy. What we have to juggle is amazing. The cancer, the side effects of meds, the loss of appetite. I see the kidney doctor next week. I am going to ask to be weaned off of Verapamil. The dose is already cut in half from two months ago. BP was my presenting issue with MM, as I have MGRS, the renal/kidney version of MM, plus MM. Since ASCT, no more cancer in kidneys driving BP high. BP has plummeted. I also learned that both Revlimid and Darzalex can carry low blood pressure as a side-effect. Has anyone else had issues with some of the meds, especially the BP meds? I have to take valacyclovir with the chemo, and they had to cut that dose in half because it is very hard on kidneys. This is all such a delicate dance we do, and I don't know about you folks, but some days I get real weary from medical stuff.

I am scheduled for techglisamab. I would love to hear any experiences.

While researching, learnt about DEXA scan. Is this something that should be done or can be discussed with the doctor to check bone density to calibrate bone strengthening doses? More insights and experiences with this will be super helpful.