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..

My name is Raychelle I was just diagnosed the end of July look forward to getting all the information I can cause I am new to this

Greetings and Blessings to all; I’m 67 (healthy outdoors organic type ) and got the diagnosis in April ; took off for May on a vacation. MRI in June shows no lesions yet but the levels are trending higher. Of course the doctors want me on chemo right away ( Rev-Val-Dex) and I’m trying to research the effects and costs beforehand. No stem cell transplant here in Hawaii so that’s a big deal. Everyone has an opinion seems ( Fight ! Use alternative medicine! It’s from the Vaccine! ) especially What more do you want out of life? Well how about making this my finest hour The End. I really feel like some time alone and away to deal with this decision. Can you relate?

Hello everyone, I hope it is not too indiscreet to ask people to preface their comments with their age or birth year and the date when they were diagnosed when they post or ask a question, like bellvuetower did? It might be helpful in understanding the different reactions to different medicines if we know the background in each other's stories. Thank you! Many wishes of happiness and good luck to all.

HealthTree University has a collection of webinars on Amyloidosis; it covers a variety of topics from symptoms to diagnosis, to treatment. Take a look here: https://healthtree.org/myeloma/university/courses/2DimkuJJLTYpZaOzKLal

Hello folks, In case you have not heard yet, we want to share some recent good news for multiple myeloma patients and their caregivers. Two new drugs have been approved for multiple myeloma in just the past couple of weeks — Talvey (also known as talquetamab-tgvs) and Elrexfio (also known as elranatamab-bcmm). Both of these drugs are immunotherapy drugs called Bi-specific T-Cell Engagers (BiTEs). One part of the drug binds to a protein on the patient’s T-cells, which are an important part of the immune system. Another part of the drug attaches to a protein on myeloma cells. Then, when the T-cells and myeloma cells are close together, the T-cells can destroy the myeloma cells. For more information about Talvey: https://www.jnj.com/u-s-fda-approves-talvey-talquetamab-tgvs-a-first-in-class-bispecific-therapy-for-the-treatment-of-patients-with-heavily-pretreated-multiple-myeloma For more information on Elrexfio: https://www.pfizer.com/news/press-release/press-release-detail/pfizers-elrexfiotm-receives-us-fda-accelerated-approval Cheers!