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?

Has anyone been on the combination of Daratumab +Talquetamab and had chills so bad you shook for an hour or two and couldn’t get warm?

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.

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?

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

I would like to know the success or not of using a cold cap for stem cell transplant.

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.