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1finegrandma
Multiple Myeloma Discussion • February 19
Bactrim side effects/hair loss
I started taking Bactrim the early part of September 2025 after my CAR T and have been on it continuously since. I have started experiencing hair loss (at a more rapid rate than usual) I am 66 years old woman and have had thinning over the years. I was wondering if anyone else has experienced this? I have my 6-month CAR T follow up next week. I may request that I be taken off it. Please let me know and if it grew back once stopped.
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Rbuttles64
Multiple Myeloma Discussion • February 19
Medicare vs group health insurance for Car-T coverage.
Hello All, Is a group health insurance plan more likely to cover Car-T as apposed to Medicare? If anyone has personal experience or knows from others experiences and would like to share, thank you in advance. I’m trying to decide whether to stay on my husband’s health insurance or switch over to Medicare now that I am 65. Best, Robin
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apsmile
Myelofibrosis Discussion • February 18
Northeast Ohio
Hello to all the warriors. I'm looking for people living with a MPN in northeast Ohio, specifically Cleveland and the surrounding areas. I'd like to start a support group, unless you know of one. Let me know.
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Donnabaxter
Chronic Lymphocytic Leukemia Discussion • February 17
Mouth Sores
Can anyone recommend a treatment, supplement or medicine to help eliminate constant mouth sores? They are so painful and seem to be getting worse. Thank you.
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caraofeve
Multiple Myeloma Discussion • February 17
Change in Price and Support for Lenalidomide
I was diagnosed with MM in July 2025 since that time I have been taking Lenalidomide and had co-pay assistance from Teva, the manufacturer, that covered the prescription in full in conjunction with my commerical health insurance. In Jan the co-pay assistance covered $550. This month, Feb 2026, the manufacturer only covered $42 for a 21 day supply with 7 days off and indicated the medication costs $1.95 per pill airgo the change in what they will cover leaving my with an out of pocket cost of $509. From 0 to $509. I can't afford this and have not been able to get anyone to give me a more reason explanation. If the price changed perhaps CVS Specialty Pharmacy has not been made aware. Has anyone else taking Lenalidomide experienced this situation or perhaps has a more in depth explanation as to what has changed with the price and co-pay assistance from Teva with Lenalidomide. I am looking for assistance in order to clear this issue up and be able to continue my the medication without breaking the bank. Any assistance would be greatly appreciated. Thank you, LaSandra
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caraofeve
Multiple Myeloma Discussion • February 17
Change in Price and Support for Lenalidomide 25 mg
I was diagnosed with MM in July 2025 since that time I have been taking Lenalidomide and had co-pay assistance from Teva, the manufacturer, that covered the prescription in full in conjunction with my commerical health insurance. In Jan the co-pay assistance covered $550. This month, Feb 2026, the manufacturer only covered $42 for a 21 day supply with 7 days off and indicated the medication costs $1.95 per pill airgo the change in what they will cover leaving my with an out of pocket cost of $509. From 0 to $509. I can't afford this and have not been able to get anyone to give me a more reason explanation. If the price changed perhaps CVS Specialty Pharmacy has not been made aware. Has anyone else taking Lenalidomide experienced this situation or perhaps has a more in depth explanation as to what has changed with the price and co-pay assistance from Teva with Lenalidomide. I am looking for assistance in order to clear this issue up and be able to continue my the medication without breaking the bank. Any assistance would be greatly appreciated. Thank you, LaSandra
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caraofeve
Multiple Myeloma Discussion • February 17
Change in Price of and Support for Lenalidomide 25mg
I was diagnosed with MM in July 2025 since that time I have been taking Lenalidomide and had co-pay assistance from Teva, the manufacturer, that covered the prescription in full in conjunction with my commerical health insurance. In Jan the co-pay assistance covered $550. This month, Feb 2026, the manufacturer only covered $42 for a 21 day supply with 7 days off and indicated the medication costs $1.95 per pill airgo the change in what they will cover leaving my with an out of pocket cost of $509. From 0 to $509. I can't afford this and have not been able to get anyone to give me a more reason explanation. If the price changed perhaps CVS Specialty Pharmacy has not been made aware. Has anyone else taking Lenalidomide experienced this situation or perhaps has a more in depth explanation as to what has changed with the price and co-pay assistance from Teva with Lenalidomide. I am looking for assistance in order to clear this issue up and be able to continue my the medication without breaking the bank. Any assistance would be greatly appreciated. Thank you, LaSandra
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DavidO
Multiple Myeloma Discussion • February 16
No Fever With Infection?
At my recent visit to my oncologist, I thought I heard him say under his breath something about being immune compromised and not having a fever when you’re sick. So I asked ChatGPT (I know) and it seems that that’s a real thing. I don’t have enough immunity to trigger a fever in my body. So it’s more important for me to pay attention to how I’m feeling and if things are changing as opposed to worrying about whether I have a temperature or not. I find this kind of interesting because when I left the hospital, they said, “If your temperature is 100.4 or higher, go to the ER immediately!” However, it seems I may never reach that point. Has anybody else been told (or experienced) that you could have an infection or be sick without a fever? I guess I should clarify: I realize that healthy people can have an infection (cold, UTI, etc) without a fever. Maybe I should say “a serious infection that would normally spike a fever in a healthy person”.
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NormaL1
Multiple Myeloma Discussion • February 14
Reg vs decaf
I have ckd 3a. My pc told me I can improve kidney function by switching to decaf. 1. Is there a difference in flavor between reg and decaf black tea? 2. Anyone that has switched noticed an improvement?
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NormaL1
Multiple Myeloma Discussion • February 14
Reg vs decaf
I have ckd 3a. My pc told me I can improve kidney function by switching to decaf. 1. Is there a difference in flavor between reg and decaf black tea? 2. Anyone that has switched noticed an improvement?
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Denise
Multiple Myeloma Discussion • February 14
Pain Management
I was diagnosed with IgA  kappa  multiple  myeloma Ultra high  risk about 9 months ago. Due to the severity of my back lesions, fractures etc. I am not a candidate for Kyphoplasty. Has anyone tried holistic treatments, acupuncture or massages of any kind to help w pain? Thanks
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Pheba1
Multiple Myeloma Discussion • February 14
I. V. I. G. infusion and headache.
Does anyone have a severe headache after IVIG? I always get a headache 48 hours after treatment Some months are mild, some are very bad. Just wondering if it is normal.
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Suzukiviolin25
Multiple Myeloma Discussion • February 14
Swollen feet and pain during Dara KRD treatment
I'm in my 4th cycle of Dara KRD and I suddenly developed very swollen feet at the end of cycle 3. I had a doppler done which ruled out blood clots. Then i had my week off (fourth week of cycle) and the swelling resolved. My oncologist at MSK reduced my dex to 20 mg from 40mg. However after starting Cycle 4, the swelling returned but this time with so much pain in my right ankle up to six inches above that. walking with a limp. So at symptomatic care, they performed an x ray and another doppler which were normal. My doctor called in Lasix 20 mg to take for three days, Has anyone on this therapy had similar experiences and were you and the team able to figure out if it was the dex causing the pain as well or was it carfizomib?