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A MyMyelomaTeam Member asked a question 💭
want to share a little update about my journey. Recently I went for a CT scan of my lungs, and today the doctor explained the results to me. They found some changes in my left lung compared to before. There are areas where the lung lining looks thicker, and a small mass in the lower part of the left lung has grown a bit since my last scan. Because of these changes, the doctors want to do another test called a bronchoscopy, where they use a small camera to look inside the airways and take samples to understand it better. Hearing all this was not easy for me. It made me emotional because it feels like one thing after another. But at the same time, I am thankful that I am already under medical care and the doctors are taking steps to find out exactly what

MM members who ever experience a relapse from the SCT .
Do they have to go for second SCT treatment and what it will be,How is it?
Any advice or suggestions 😢😖😱

February 19, 2025
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A MyMyelomaTeam Member

I was diagnosed 11 months ago high risk with the 17p deletion and lambda light chains MM. Being high risk they recommended an SCT. I didn't agree with it since with my high risk average remission if any was 1 year. My doctor says I am now in remission. But with my high risk markers he recommends I stay on maintenance for 2 years and then do a BMB to see if it is a complete remission. He lowered my maintenance drugs, so I am good with that. I have no plans for SCT, Car-t or even harvesting cells. If my disease takes a turn for the worst I will address it then. In the mean time I will enjoy quality of life for as long as I can.

February 21, 2025
A MyMyelomaTeam Member

I achieved remission right after my SCT but relapsed 14-15 months later. I’m now on a clinical trial and as of 1-2-25 my blood tests and bone marrow aspiration showed no cancer cells.

February 19, 2025
A MyMyelomaTeam Member

I had my SCT in Dec 2022 and relapsed 10 months later. I was devastated and pissed off at all the doctors. Time went my, I was on Darzalex and not responding. So in May 2024 I consulted 3 oncologist and they all recommended Car-T. There was no way in hell I was going to do another SCT and none of the doctors recommended it. I was placed on "bridge" therapy consisting of Empliciti and Pomalyst. I responded immediately and my numbers dropped significantly. We decided to stay with what is working and its been 8 months.

Since then my oncologist said Bispecific Antibodies has replaced Car-T. This used to require a week in the hospital. Last month he told me they now do it in-patient in their infusion center and most of the time is waiting to see if you have a bad response.

He also said there are trails for Trispecific Antibodies now. Plus Dr. Richardson with Dana Farber who created the SCT protocol does not recommend SCT anymore. Everyone should research Dr. Richardson and the concept of how antibodies work. It is the new future for MM treatment.

So my plan is to ride out the Pomalyst as long as possible and then move into the antibody treatment world. We are so lucky to have so many effective treatment options.

February 21, 2025
A MyMyelomaTeam Member

Greetings from Alaska via Phoenix I never achieve remission. My M spike went to zero but they continue to see clones of myeloma cells. I was on treatment for well over a year before I experienced relapse. I was being evaluated for Car T but I developed osteonecrosis of the jaw due to Xgeva the bone agent. Presently, I am on Darzalexfaspro and Carfilzomib and I still have a M spike 0.2 hoping that this medication will drive it down further. God bless you all and hang in there.

February 19, 2025
A MyMyelomaTeam Member

A second one supposedly will last half as long as the first I just cleared my one year mark in November and I dont think I’d go through all that again for a 7 month reprieve. Have a doc appt tomorrow to discuss alternatives. My Kappa has jumped quite a bit but I’m hoping different drugs will be a first choice.

February 19, 2025

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