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?

I am having Empliciti infused and take Ninlaro once a week. I have leg cramps and some looseness for several days as well as flushing and yellow eyes some weeks. My liver test is o. k.

My 4 minute YouTube episodes of lessons learned from 31 years with multiple myeloma include one episode on how we deal with emotions Below links to the latest episodes; click “videos” at top to see all episodes https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysg

I was MRD negative for almost 5 years, but my recent follow up has me MRD positive with about .0036 percent. Is this anything to be concerned with? I understand that I may show up at my next follow up in 4 months and could be MRD- then.

As for ELO, I was on it 5 years ago with Pom/dex and then Ninlaro also. It did help lower my m-spike but I relapsed after 15 months on it (this was my 4th One of treatment). No side effects though, and I was more responsive to darzalex which was my next therapy

Hi everyone! I am debating on getting a port/central line for regular exams and chemos, I would love to hear some experiences. My veins are really hard to find and every chemo they have to do many steps in order to be successful. Yesterday they called the specialist, warmed my arm, used the veinfinder, and it was 9 tries until finally have a good vein. It is really time consuming and painful. Anyone here had an experience to share? I am adding here a photo, because I am not sure if it is the same name in other countries. Thank you! Nat

Stable Disease? I am a nine year survivor and non secetory. I have been through almost everything except Car-t and Silexinor. After ending Blen REp in Sept 2021 I have been without treatment for 16 months except for focused vegan diet and mushroom supplements plus DEX. I thought I was in stable disease but the past couple months it rose to an NGS of 18,000. An exponential doubling rate of 30 days. When I ended BLen Rep I was sub MRD so that explains why it took 10 months for my number to go up. This doesn't qualify for relapse and a new drug without changes in other blood markers. So I made more changes to my diet and my mushroom supplement routine and today I got a CBC which showed that it went back into the normal range ( Red count of 4.6, White count of 8.5 and Hematocrit of 45.1)-- so today I am really happy. Looking forward to get my CLoneSEQ results from today's BMB ( #45) nest week. My hunch is that it is back from 18,000 to maybe less than 10,000. Although I think these numbers are really high I feel really good and will be happy with these If I can maintain this level of Stable Disease with just the diet and supplements. Certainly better than weekly infusions and $20,000 per year for Selixnor (LOL). We will see but with these CBC numbers it will be a great bike season this summer.

Hi.....my Drs seem stumped why I randomly experience massive leg cramps at night. One or both legs...below the knee...could be like a charlie horse or like a shin splints that can move down the leg into the feet... very painful and takes up to 15 to 25 min to walk off. Potassium and magnesium levels are good and I am well hydrated. No correlation to Revlimed...Dex... Darzalex or kyprolis. The cramps average 3 to 4 nights each week. Crazy but very painful. Thanks for any words on this topic.

After having read my original post, I don't think I was clear that Deke has not yet had any treatment at all. We go to doc this Friday, Feb.10, and presumably we'll learn about treatment plans then. I've read that Velcade is administered 2x a week, but Deke already has an out of state work assignment next week, so I guess nothing will happen until week after next at the earliest. Also, can anyone comment on Velcade and what we can realistically expect as side efects? I know everybody is different, and I'm just foolishly hoping that some of you will say, "Well, the side effects aren't really bad enough to disrupt your life significantly. Thanks. Patricia

I'm writing this because my newly-diagnosed husband (I'll call him "Deke") would never dream of doing such a thing. However, it's long been my role to be the gatherer of health information for the two of us, and I know we'd be better off if I add legitimate (I hope) info to the real-world experiences of those of you who are walking the same path. Having said all of that, I need to describe our/his situation. Deke, who turned 84 in December, has been monitored by an oncologist/hematologist every 6 months for MGUS since the summer of 2020. Much to our surprise and dismay, the doc announced at the last monitoring--or that's what we thought it was--visit that Deke now had active, "aggressive" multiple myeloma and would be treated with Revlimid and Velcade. That was November 23, 2022. Some of these events run together in my minds, but I think at that point he then had a bone marrow biopsy and a PET scan. When we went to the doc after the PET scan, we were expecting treatment to begin; but the doc said Deke had lost 30-40% of his kidney function and the doc "didn't want to start treatment too soon or two late." Deke has been an insulin dependent diabetic for 40ish years, and he had bypass surgery in 2019; however, he is very active physically and has had no symptoms of kidney disease, and no discernible symptoms from the myloma until the past week. But it's now been 2 months and 2 weeks since his diagnosis, and of course there's no way to know when his MGUS finally morphed into active myeloma prior to November 23 when he was beeing seen on an every 6 months basis. This just doesn't seem to square with what I have read about people's diagnoses and the start of treatment. Deke's doc is highly regarded by other doctors in our area, and, of course, I don't know any myeoma patients I can quiz about this process. I have one friend who was treated by this doc, and she speaks favorably of him--but of course, she didn't have myeloma. I've tried to limit myself to the salient facts, but I do apologize for the length of this post. Any comments that will encourage/inform/whatever will be appreciated.