Hi everyone. I have just found this group and responded to Jenny's question about treatment vs watch and wait but thought I would share what I wrote of my experience so far in case it was helpful for others. I was diagnosed with MGUS by accident in 2021 and after a bone marrow biopsy last January was diagnosed high risk SMM by my local oncologist who I had been seeing since MGUS diagnosis. I then saw two myeloma specialists and they had very different opinions. One (Northwestern Memorial) felt I was already in overt MM due to the trajectory over the four years of my IgA and I should start the four drug induction toward a SCT. The other (Mayo) felt my four years of data and lack of any CRAB symptoms showed smoldering and recommended increasing monitoring and waiting on treatment. My local oncologist agreed with the Mayo doctor and I did as well based on my own research but it was a hard decision. The Northwestern doctor had advised if I monitored for a bit to get monthly blood draws and my specialist recommended blood draw every three months and whole body low dose CT every six months in order to intervene with treatment before developing any CRAB symptoms. Due to concerns from the Northwestern doc's opinion I opted to do the blood draws every six weeks and the CT every six months. So far my blood test results have been fairly stable and I just had the CT on Monday and there were no signs of lesions. I feel great and am doing everything I can to stay as healthy as possible - nutrition, sleep, exercise, stress level. Of course it is stressful to "watch and wait" but I did not want to start a treatment I might not need for "years" until it was necessary even though this of course goes against advice for most other cancers which you want to treat as early as possible so it is a bit of a mind messer. I understood that once I started treatment I would not feel as I do now and would probably have to stay on some meds the rest of my life barring advancements in treatment such as some results with Car-t cell therapy. My specialist said they typically see a slow drop in the hemoglobin towards anemia as the first sign of progression so that is one of the areas I look at when my results come in. So that's where I am at currently. Barb

Hi I my name is Melanie and I am 50yrs young. I was diagnosed in June/2022. I have been in remission since Jan/2023 after my stem cell transplant. I take a chemo shot every two weeks and am on lenalidomide from Monday to Friday taking weekends off for 3 weeks and off for 7 days. My question is does anyone know if it’s safe to take a 5 mushroom capsule it has ( reishi, turkey tail, lions mane, cordyceps, change)?

My M protein lab came back as Not Quantifiable. What does this mean? My doctor usually emails/calls a week later to discuss but I can’t wait!

Anybody go thru car-t transplant?

I am 2 years post SCT for Multiple Myeloma and fortunately still in remission. I am still on a regimen of Dara / Revlimid, but before my SCT I was also taking Velcade / Dex. My feet have been numb since I started treatment, but seem to be getting worse. I have been told by my doctors that Velcade is the culprit and after 2 years it may be permanent. I have tried several supplements and even acupuncture, but nothing has helped. Has anyone found a treatment that has helped reverse the numbness in their feet?

Hello Everyone Are there any chemo drugs that do not cause neropathy or are less likely to cause? I wss in remission and Dr switched me to Darzalex for maintenance. It cause terrible neuropathy in my hands. feet and legs up to my knees. Right now I am not on any treatments. Just monitoring bloodwork for now. Just want to resesrch in advance. Thank you for any recommendations. Have s blessed day!

Has anyone gone into the ASCT with leg weakness due to severe neuropathy? Did your mobility worsen? My husband is 57 and is using a walker/cane due to nerve damage (temporary, we hope) from Velcade during chemo. His doctors advise him to go ahead with the transplant, but we are worried his mobility will get worse. Any experience with this?

Has anyone had multiple skin cancers diagnosed after taking many MM medications? My oncologist warned me to get 3 month full body skin check ups and glad he warned me because I’ve had many I’ve had to have removed. Both basal and squamous cancer cells.

Sunday morning I received a call from my oncologist and she let me know that the chemo wasn't working. So tomorrow I am to get a biopsy to figure out what other path I will be taking. Wish me luck...🙏🏾

I retired from Accuride Canada in 2007 after over 38 years. It wasn't until December of 2024 that I was diagnosed with Multiple Myeloma Cancer. I have MGUS. In the months since being diagnosed it has come to the attention of the London and District Myeloma Cancer group that there are other former employees of Accuride Canada that also have been diagnosed with Multiple Myeloma Cancer. So far the number is at 10. In the general population the diagnosis is small but in the retirees there is a spike. If you or anyone you know that worked at Accuride Canada/Firestone Steel then please tell them to get tested.

Husband doing his day Cart T + 30 PET/CT tomorrow and is anxious as he’s been experiencing pain the last two days in areas of old lesions. Anyone experience the same? What was your outcome? 🙏🏼