My father has been suffering from multiple myeloma for the past two years. His third immunotherapy, darzalex, is going on. He has become extremely weak now. He’s barely able to do his simply tasks like bathing etc Since darzalex started this weakness has taken another lower level. His bones are fragile and even a simple leg movement causes ligament wear and tear. He’s 79. He’s going through physiotherapy too. Right after the weekly treatment, his stomach gets upset sometimes and sometimes he just doesn’t feel like eating anything. Are these normal symptoms? Is there anything anyone can advise? It’s heartbreaking to watch him like this. The ongoing darzalex treatment is at the stage of finishing his 8th shots this Friday.

First of all, I want to start off saying I thank you Lord Jesus for your divine healing and the doctors and nurses and everyone who worked with me in my life it’s been six months since the CT transplant and I thank God God, I still have been doing Well I’m excited about the next chapter in my life. I don’t know what that entails. I go to the doctor once a month now to check on my blood and the rest of My blood counts. I started after care things like infrared therapy hyperbaric chamber. And also ozone and foot detox it has helped me tremendously Now it’s time for me to go to the dentist. We’ll see how that goes.

Does anyone have any experience with a new monoclonal antibody approved to prevent Covid-19? It is called Pemgarda.

Has anyone else had issues with Medicare not approving charges for the doctor who did a 3-D genetic analysis of the tissue from my bone marrow biopsy? Medicare also didn’t approve the same doctor’s evaluation of my blood smear. Any suggestions, coding issues?

Do U get blood transfusions often and if so where? I had to go to ER for mine. Also anyone been on ninlaro? side effects? Thanks

My name is Donna. I’m 54 and will turn 55 on June 15. I was diagnosed at 53 with high risk MM. I had my stem cell transplant in November 2023. I’m currently in remission. I hope to connect with other people like me.

Might the 40 mg of Dex taken weekly on injection day (Dara) be the reason for 1000 mg of sugar in urine sample given that very same day?

Does anyone have experience with loosing taste and smell after Car T (due to CRS reaction)? If so how long did it take for it to come back?

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!

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

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

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

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?

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.