Algorithm for Treating AL Amyloidosis

Hello Amy warriors. I ran into this article, which gives a pretty good review of AL Amyloidosis, which is especially useful for newly diagnosed fellow warriors. AL Amyloidosis for Cardiologists: Awareness, Diagnosis, and Future Prospects: JACC: CardioOncology State-of-the-Art Review https://www.jacc.org/doi/10.1016/j.jaccao.2022.08.009

I am in Halifax Nova Scotia Canada & they currently introduced Car T cell therapy for other blood cancers like Leukemia & we were told they are 6 months out for MM. I am grateful that they have it here as I expect my husband will require this. His MM, I have been told, is hard to treat. He is in partial remission right now & will be put on Revlimid & Ninlaro. The Dr. thinks this will keep him in remission for a year. I'm hoping that he'll be in remission longer than this.

I had the Stem Cell Transplant in March 2022 at MD Anderson. All is very good so far. I take Revlimid and Ninlaro for maintenance and should be finished with it in June 2023. My maintenance dose of Revlimid has been arriving late since October. Accredo was just not a good Specialty Pharmacy for me. I just changed to CVS Specialty Pharmacy. I hope I don't need CAR T-Cell. I was told at MD Anderson in December they can only get enough Car T-Cell to conduct 2 Car T-Cell therapies per month. I have thought CAR T-Cell was a miracle drug for MM. It just lacked enough trial time to be approved as a first line MM therapy. Is that wrong?

I want to try CAR T but can’t get in clinical trial’s because I’m not relapse/refractory. I’ve got active m-spike and high free light chain/ratio with no remission but no increase. They don’t know what long term treatment or active myeloma will do to my body yet I don’t qualify for something that might put me in remission.

Three weeks into LUMMICAR-2 trial at Huntsman in Salt Lake City and doing well. Fortunately I have not experienced any of the expected side effects. Feel very blessed to be part of the study and praying for best results.

I have relapsed myeloma but doing well on Darzalex for now. Specialist says I’ll probably need car-t at some point. But I’m almost 76 and maybe too old. Any thoughts?

Being a myeloma fighter and survivor is like climbing a mountain. The further you go up, the steeper it gets, the air gets a little thinner. Being nonsecretory is like climbing it blindfolded. I’m honored to be sharing the climb with the members of this forum. Let’s just put one foot in front of the other. Don’t look down.

Had my CarT therapy in September 2022. The process was good and much easier on me then the 2 BMT’s I had 10 years apart. I’ve been fighting, and beating MM for 19 years! I was in remission from the CarT for 16 months, a lot less time than my BMT’s! Right now I’m in the process of finding out just how much of the MM is back. I go to the University of Iowa tomorrow for my 2nd biopsy in 2 weeks, more blood work and an MRI. A spot was found on my L14 vertebrae, so more tests are needed to see what it is exactly. My Dr has laid out 3 different possible treatments, which we’ll decide the best one for me once all the test results are back! Stay strong my fellow warriors!

I just received approval for CAR T at Stanford. I'm not sure yet what kind. I completed a stem cell transplant in December that does not seem to have worked. My PET scan shows new disease in a few areas. My bone marrow biopsy sample does not appear to be good enough to provide accurate info even though they though they had a good sample. This happened previously as well. I don't know why my bone marrow doesn't cooperate! Very much looking forward to when they can get this information out of our blood!

Had my CAR-T in June 2021. I'm still in remission as of February 2023. VERY grateful! I do receive monthly immunogloblin infusion to boost my immune system, and Zometta every 3 months. I suffer GI issues, poor balance, never ending sniffles / runny nose, and low energy, but I could not be more grateful because prior to CAR-T cell treatment, and starting at diagnosis in Fall 2017 I had received various other treatments (ie Revlimid, Velcade, Dex) and nothing worked. The last chemo treatment (Xpovio) was very rough on me, gave me no benefit so it and was discontinued after only a few weeks. Would like to hear from others about CAR-T post-treatment issues and how long did their remissions last.

Just FYI everyone, for those near Utah, Doug Sborov is opening trial spots. While they have Abecma and Carvykti spots, he also said that they just opened two more CAR T clinical trials at Huntsman which include LUMMICAR-2 (a new CAR T called Zevor-cel by CARSgen Therapeutics), a BCMA CAR T. The second one is ARC-112A (a new CAR T called CARddbmca) by Arcellx. Interestingly, Arcellx was just bought by Kite Pharma which is a CAR T only company and has products in leukemia and lymphoma. They say they've nailed the production issues and have much faster production than others.

Ida-cell vs cilta-cell car-t. Can anyone comment on the more recent cilta-cell car-t ?

How was the actual process of CAR-T therapy on the body? Stem cell transplant was pretty tough.

Had car-t in April 2021 complete remission (MRD-) for 19 months. No drugs! Relapsed December 2022. Now on bispecific antibody. One shot each week. Enjoy your CAT-T remission while it lasts!

I had my CAR -T cell therapy November 2021. I have been cancer free since them. I do not take any type of maintenance drugs. Life is good.

I'm working hard to get a slot. Lesson learned: Don't hesitate to get a second opinion, you may find a doc who has the energy and insight to help you make it happen, even if it's outside of their center. She is truly a doctor without borders.

Hi Everyone, CAR-T seems to more and more widely discussed. Even read articles where CAR-T is being considered to become a part of the introduction therapy with MM. My question is about availability in Eastern Europe? I’m not sure with who to discuss this. I’m a care giver and the patient is in Latvia.

Started this journey in early November. Induction treatment began in the middle of Dec. So far his High-Risk MM has responded well to treatment. We are on the list for the stem cell transplant at UCD, Sacramento. Does anyone else have any experience with UCD, Sacramento? Also, the transplant will be done on an outpatient basis. Has anyone else done an outpatient transplant? Grateful for any feedback you can offer. Patty

I can't seem to get Revlimid delivered from a Specialty Pharmacy on time to stay on schedule with my maintenance dose for Multiple Myeloma. This was not the case when I was taking the therapeutic dose before my Stem Cell Transplant in March 2022. Two changes have occurred since March 2022 I think may have impacted the insurance approval and delivery of Revlimid. First, a generic Revlimid was approved, but is just not readily available. The insurers started approving the generic Revlimid, which wasn't available, and created a slow down in approval of funding the drug by only approving the generic drug. The pharmacy at MD Anderson does not fill outpatient orders for Revlimid because it is so difficult to get approved. Second, the Biden administration made changes to address the overall cost of drugs for Medicare patients. I believe drug companies reacted with more strict requirements for financial payment for the drugs. Has anyone else noticed a slow down in approval of Revlimid and resulting delays in delivery?