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Lynn NY
Multiple Myeloma Discussion • May 30, 2024
Carvykti Experiences & Neuro Side Effects?
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Hi - I was diagnosed with Lambda Light Chain Myeloma in 2016 and have been on several therapies since and for the most part, have done very well. I have basically exhausted the less invasive options at this point and now it appears that my myeloma is becoming active again so my Dr. has suggested CAR T Cell Therapy with Carvykti. I am terrified of the possible neurological side effects, especially ones that cannot be reversed and I'm wondering how others have done on this therapy and if they have experienced the neurological side effects and if so, how were they treated, how long did they last or are they ongoing. Was it a difficult recovery? Did you need home assistance after hospitalization? I look forward to being on the other side of it and not having any treatments for a long time, but I honestly feel like I'll be walking into fire as I enter the hospital. Can anyone provide some feedback of the realities of this? Thank you. Wishing you all well!
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Isaac
Multiple Myeloma Discussion • May 30, 2024
Protecting Testosterone During SCT: Icing?
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Hello, I'm a Myeloma patient hoping to undergo a stem cell transplant. I'm wondering if anyone has tried putting ice on their testicles during the stem cell transplant. I was told it could help prevent low testosterone problems? Thanks
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MrMike
Multiple Myeloma Discussion • May 29, 2024
Get Involved: Proactive Cancer Education
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The American Cancer Society estimates that over 40% of Americans will be diagnosed with cancer in our lifetime. Yet we still treat it in a very reactive way. We try to learn about our cancer, treatment options, navigating our broken healthcare system, trying to understand our VERY confusing health insurance, and so much more - AT THE WORST POSSIBLE TIME - right when we are diagnosed and having other thoughts clouding our mind like, "OH MY GOD I'M GOING TO DIE". Towards that end, we will be kicking off an initiative called "Educating Towards a Cancer Free Tomorrow where we bring this education BEFORE cancer strikes. The initiative seeks to bring cancer education to our high schools as part of their standard health curriculum. If have interest or think you can provide support, we'd love to hear from you. Mike MikeH@SoCPAnow.com
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MrMike
Multiple Myeloma Discussion • May 29, 2024
Sharing a Positive Bispecific Trial Experience
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To say my results were amazing on the two Bispecific Antibody trials I was on would be an understatement. And the positive results are fantastic. LOOK INTO CLINICAL TRIALS for BISPECIFIC ANTIBODIES
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JennyA • Admin
Multiple Myeloma Discussion • May 29, 2024
Ice Cap for Transplant: Did It Work?
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Hi everyone! Asking if anyone has tried an ice cap both during the CDE pre-transplant collection process and the melphalan part. Anyone used it? Did it work?
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burgundyDragonfly
Multiple Myeloma Discussion • May 28, 2024
Managing Dental Issues From Zometa & Radiation
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I began my journey with a diagnosis of plasmacytoma in the paranasal sinuses on the right side. Once that diagnosis was completely confirmed with additional testing, I went on daily radiation treatments of those areas. A band above the eyes and a band below the eyes focused on the sinus areas. This lasted for 6 weeks, 30 radiation treatments in all. It worked, it eliminated the plasmacytoma. A few months later, I was then diagnosed with multiple myeloma. Some of those cancerous cells were apparently missed by the radiation and moved throughout my body. To make a long story shorter, I went on chemotherapy. At first it was (VRD) Velcade, Revlimid, Dexamethasone. Then later on, Zometa was added. I was on it for more than a year. The bottom line is, the radiation damaged both my gums and my teeth. I’m dealing with that today. I have some serious dental issues now and had nothing of this magnitude prior to these treatments. I’ve been off the Zometa (zoledronic acid) since February of last year. I’m working with a highly skilled oral surgeon and periodontist that is associated with the cancer center. He is dealing with gum, bone, and teeth issues. He is very concerned about my previous use of the bisphosphonate, Zometa. He said its impact on the bones can last for years. And it affects the jawbone specifically; creating an ONJ condition. So, to summarize; the radiation, the Zometa, and the multiple myeloma itself have had a major impact on my gums and my teeth. I’m now a regular at his office for various treatments to deal with my dental issues. And of course, multiple myeloma itself can have a negative effect on the bones along with the impact of the chemo drugs on those same tissues.
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Annborell
Multiple Myeloma Discussion • May 27, 2024
Experiencing Loss of Taste/Smell After CAR T?
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I had infusion of my Car T cell May 6th. I have lost my sense of taste and smell. Wondering if anyone has experienced this as a result of Car T or perhaps the lymph- depleting chemo that had prior to infusion caused it?
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3sisterskaye
Multiple Myeloma Discussion • May 24, 2024
Home Prep & Diet Tips for Post-Transplant?
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Is there a link to how to prepare your home when you get home from stem cell transplant. Also is there a link to the diet you are supposed to be on post transplant. I have information but I thought someone might have some other information to share. Thank u
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1finegrandma
Multiple Myeloma Discussion • May 23, 2024
Managing Gum Infections With Myeloma?
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I was wondering if anyone else is experiencing gum issues. I have had continuous problems with gum inflammation and infections since August 2021. Prior to this I always had outstanding dental appointments. My peridontist hesitates in doing any surgery that may help due to the fact I had Zometa for 2 years which I stopped in January 2018. He ran a CTX blood test which shows how well your bone turnover is. I was at 121 and a normal reading begins at 150. He is concerned with osteonecrosis. In my last visit, he says it is the myeloma causing the infections which doesn't make sense because I just had a CT/Pet in March 24 and it didn't show any bone involvement. Thank you in advance for your time.