Diagnosed with MGRS/MM in October 2023. Four months induction with four drug regimen, Stem cell May 2024. Can't believe it has been a year. On Darzalex and Revlimid. I picked up a head cold on May 3, most likely an enterovirus or rhinovirus. This thing is evil. Hubby had it and 3 weeks later is still coughing. I am still coughing going on 8 weeks. I called oncologist a week ago and told him about cough. He scheduled an IVIG transfusion. 4 days ago I woke up with swelling on right side of face. The swelling became worse and worse So, yesterday I had hubby drive me to oncologist. NO appt. I just showed up. Oncologist (yes, he is a great physician), sent me for CT scan of head. I have a Parotid infection, so on antibiotics, two very strong antibiotics. The virus has morphed into an infection. Sorry for the long explanation. Here are my questions. Has anybody else been through something like this? Also, my oncologist says if this keeps up he is going to change my drug regimen. Are there other regimens for follow-up chemo besides Darzalex and revlimid. I believe they are treating aggressively because my FISH study shows 3 very bad chromosomes that put me at high risk of a double hit, or a secondary cancer. Thanks

I have MDS. I would like to touch base with other people with MDS and find out what there treatments are. Arthur kaplan

Hi. I am in remission, an I am currently on maintenance treatment. I did stem cell collection and opted out of a stem cell transplant for now. I did very well on my induction therapy and was able to get to remission in 6 months. For anyone who has done maintenance treatment, how long did you do it before you decided to stop and just monitor the disease?

I am sorry i missed your survey on pain My nerve pain is controlled very effectively Through capsicum ointment. It is extremely hot and confuses the messages to the brain. My pharmacist says it does not work for all people but for me it is a godsend CAUTION the ointment is very hot and can burn the skin. Start with the lower. Strength. Be CAREFULL The brand i use is zostrix, you may need to use it for s couple of weeks before it becomes effective

I see you have a meet up on7/28 , how do I find out where there are more. I really just can't make this one due to being in Md.