40/M diagnosed 5 years ago. MM in my lower spine. 2 rounds of radiation. Bout with chemo- KRD+Dara. Stem cell transplant a year ago. Ask away!!!

Greetings! Please join us for a live Webinar event. Beyond Standard of Care Treatment for Light Chain (AL) Amyloidosis: The Promise of Tomorrow Presented by Heather Landau, MD Tuesday, September 26, 2023 3:00 PM ET Register here: https://www.pathlms.com/amyloidosis/webinars/36919 Heather Landau, MD, is a hematologist-oncologist and the Director of the Amyloid Program at Memorial Sloan Kettering (MSK) Cancer Center focused on increasing access to novel, effective therapies in AL amyloidosis and has investigated drugs at all stages of development. She has conducted multiple investigator-initiated clinical trials exploring novel agents and approaches, including consolidation and maintenance strategies in high-risk patients. She led the development of MSK’s Outpatient Transplant Service and is studying innovative ways to optimize high-dose therapy and transplant care. Pharmacokinetically dosed conditioning has the potential to truly personalize high-dose therapy and Dr. Landau has shown that delivering transplant care at home is safe and improves the quality of life and satisfaction of patients and caregivers.

HI! Anyone been told how long to wait after having covid to resume treatment? It's highly possible that due to my white blood cells going low after starting POM, I got covid:( Afraid it might rebound if I restart too soon tho did restart on the Dara and doing better with my back.

Hello everyone! This is my first post on HealthTree Connect. Does anyone know of myeloma specialist in the country that is also a heart specialist? They might be a Cardio-Oncologist... What is a Cardio-Oncologist? Cardio-oncology is a new field in cardiology. Cardio-oncologists are typically cardiologists who see cancer survivors or patients getting cancer treatment who develop side effects that affect the heart. Cardio-oncologists have a special interest in and knowledge about cardiac side effects of chemotherapy, targeted therapy and radiation to treat cancer. Since it is a fairly new field in cardiology, many U.S. cities do not yet have cardio-oncologists. https://www.cardiosmart.org/topics/cancer-treatment-and-your-heart/what-is-a-cardio-oncologist

Hello. Was just diagnosed with POEMS syndrome and struggling to find others to connect with, and there seems to be very little patient centered information. Does anyone have a group to suggest? Thanks.

I am scheduled to receive my CAR-T infusion (CARVYKTI) on September 18. Beyond the legal disclosures, my oncologist has not been very forthcoming about the side effects that I should anticipate. I have looked at the information offered on the Janssen website. That is only slightly better than what I have received from my oncologist.The Janssen site lists everything and warns that many of them can be fatal (even if that is highly unlikely) - it appears to have been created with strong direction from their Legal Department and/or the FDA. I do understand that the side effects can vary tremendously from one patient to another. However, I would **REALLY** like to understand which ones are most common and how long they are likely to last. Any input from folks in this group would be greatly appreciated. Any tips for dealing with the side effects? Any advice for getting through the first month when I am supposed to have someone with me 24/7? That duty will fall to my wife, with the possible exception of a couple of times when a friend or family member might relieve her. Any things that you recommend doing in advance (e.g., stocking up on groceries, having a date night, etc.)? Thanks

Has anyone had experience with ‘parkinsonian’ symptoms (such as hand tremors, lack of expression, unnatural and slow movements, neurological deficits, low engagement) post car T? My mother has been experiencing these symptoms; they started around day +30 post Carvykti. Her treatment plan started with Dexamethasone + Anakinra, followed by a dose of Cytoxan when she did not show enough improvement. We saw some positive changes on the day she received Cytoxan, but progress has slowed. We are waiting and hoping she continues to improve. Has anybody had any similar experience with this? Would really appreciate any information. Thank you!

Joint Pain ? Specifically elbows ? On 15mg daily revlimid. Elbows are sore - often.

I'm headed for a CAR T with the Lummicare trial...wondering if anyone here has gone thru it already..