Has anyone gone through remission without SCT or CAR-T

Hi @danis20 There are many different types of blood cancers and lymphomas that may or may not go into a durable remission with treatment. It really depends on the blood cancer, possible mutations responsible for the disease and varying other factors unique to each patient.
But certainly there are patients who go into remission with chemo, targeted therapy, etc., and nothing further. Though for some patients, their doctor may suggest maintenance therapy to augment the initial therapy if there is a higher risk of relapse. Or they may recommend SCT or CAR-T therapy for a long term/potential cure. CAR-T isn’t approved for the treatment all blood cancers at this time.

What type of blood cancer do you have that may require a stem cell transplant or CAR-T therapy? Have you completed initial treatment for your disease? Has doctor suggested either of these treatments for you?

I was diagnosed with non-Hodgkin's Lymphoma, Mycosis Fungoides, but when I went to Moffitt, I was told I was in remission and hadn't had any treatment. I was sent there because I was told my case was too complicated and they couldn't treat me. I'm in a wait and see stage since Moffitt but was told if any of my skin "rash" looks red/purple, contact them immediately.

In 2021 I was diagnosed with multiple myeloma and amyloidosis. Stanford put me on a drug regime recommended for light chain amyloidosis . Treatment was called dara-CyborD. They sent the treatment plan to my cancer center in town who administered the treatment. It was 6 months of severe chemo, with several drugs. then weekly shots of daratumumab. My lab work was sent to Mayo clinic in AZ. Doctors are amazed how well I did on treatment. My chemo doctor said she never expected to see me as well as I am today. I still have amyloidosis but the multiple myeloma is basically gone and I am not worried about going on dialysis now. I was given the choice of stopping the shot or keeping it for maintenance. I decided to keep on doing the daratumumab. The only side effect I have is being extra tired the 2nd day after my shot. Doctor has me taking famciclovir daily to prevent shingles. (I am 87)

Yes.
But you haven’t said which non-Hodgkin lymphoma cancer you have?

My wife achieved MRD negative status with Multiple Myeloma before her SCT, but went ahead with with the SCT. She still is in the MRD negative status two years later, and is hoping to soon be off Revlimid for maintenance. Remission isn't necessarily all-or-nothing, but can have a depth measurable in terms of various blood and tissue tests for symtoms that take longer to pass.

Hi @danls20 I wanted to check in with you regarding the new discussion you started about anyone achieving remission without having gone through a stem cell transplant (SCT) or CAR-T therapy. It would be very helpful to those of us trying to give you encouragement if we knew what type of cancer you’re referring to.
Generally, SCT or CAR-T therapy are procedures that have something to do with a blood cancer such as leukemia or lymphoma. Have you been diagnosed and treated for either of those?

I have multiple myeloma, had chemo and stem cell transplant in January 2025, then put on Revlimid in May 2025. My doctor says if I stay in remission for 3 years post transplant I can stop Revlimid. My question is, if there is anyone out there that has gone off Revlimid, how long has it been with no signs of cancer?

I have not had chemo or stem cell but have been on Revlimid since MM first diagnosed in Jan 2022. Have been in remission for about a year and now on Revlimid 5mg on alternate days for 21 then of for 7 and repeat. No anticipation that I will ever stop Revelimid and expect that active MM will return at some point

Thank you. Yes, I expect MM to return one day. I try not to think bout that. I’m on Revlimid 10mg every day. I do have some GI problems but nothing too bad. I also have some joint pain, mainly in my shoulders, that I’m hoping doesn’t get worse. Do you have any side effects?