I was diagnosed with MM in the beginning of 2020 (yup! right in the beginning of Covid pandemic!!) after months of pain in my bones...I quickly got connected to the MM service at Penn Medicine and started induction. I then moved to NYC and had my ASCT at Memorial Sloan Kettering...I stayed in remission for almost 2 years, had a slight rise in Kappas so was put on Daratumamab which quickly put me back in remission. I had to get off of Revlimid as it made my immunity so low I got pneumonia so my MM doc then put me on Velcade along with the Dara. I have been in a wonderful remission ever since and my PET showed all my lytic lesions were healed!! I am so blessed and my daughter is now pregnant and I am excited to become a strong and energetic Grandma!! I continue with my Qigong and yoga and long, long walks in the city!!! Blessings to everyone here!!

Hello Everyone, LLS grants are now open. Apply now as they may not be open long

Did you know insurance buys. Ceribal prothesys. Lol wig. Much better than wig store wigs. Get doc prescription.

Hope everyone is using curehub for webinars.

My doctor wants to start me on monthly IVIG infusions to boost my immune system. My IGG levels remain in the 200's range due to myeloma treatment. I have read the long list of possible side effects. If you receive IVIG infusions, can you share your experience. I know that pre-medication with Benadryl and Tylenol is standard. I cannot take Benadryl due to a paradoxical reaction, so my doctor is recommending Zyrtec. If you pre-medicate with Zyrtec, what is the dosage? z

Any other young multiple myeloma patients here? I'm 36, was diagnosed last year at 35. I've done 3 cycles of RvD for induction therapy and ASCT. BMB and blood tests showed no detectable levels of disease, VGPR (though they don't offer MRD testing in Eastern Canada). When I was diagnosed my hematologist told me on average patients my age treated in Canada with standard risk could expect about 15 years survival. Anyone care to share their experiences with a MM diagnosis at a (relatively) young age?

Hi all, My husband started Talquetamab + Dara in February. He was getting both, every two weeks. It has had so many awful side effects. He lost his taste in February. We were told once he went down to one a month with the Talquetamab, his taste would start to come back. He is into his second month getting the Talquetamab once a month and still has no taste. It’s also causing his hemoglobin to stay low and require shots of Procrit. Can anyone share experience of when their taste started to come back on Talquetamab and how long it took? Also, did you have any issues with low hemoglobin?

I will have my stem cell transplant soon. Has anyone had success with cold capping to save their hair from the melphalan chemo?

How long before radiotherapy helps with bone pain? I've been fighting my insurance company to cover radiation for a large and very painful lytic lesion on my sternum, and perhaps naively assuming that the pain would start to lessen right away. But I had the first of five 3DCRT sessions yesterday, and the pain is significantly worse now. For those of you who had radiation to help with pain, how long did it start to work? Days, weeks? Did particular pain meds help more than others? I'm not supposed to apply ice or heat. Thanks in advance for anything you can remember.

Clinical Trials work I just completed 124 months of a clinical trial. That’s 10 years 4 months. IT WORKED. I am in remission but staying on the drug Ninlaro to keep me in remission. God is so good to me as are my caregivers, Dr. Stockerl-Goldstein and his staff.

Wondering if Flow cytometry can confirm MRD negativity or does it have to be confirmed by Clonoseq? thank you!

Has anyone tried the off shelf drug Fenbenazole? Other cancers have been successful with this drug.

Has anyone had issues with shallow breathing at night and your oxygen dropping? I think after all of my rib damage at initial diagnosis, I now don't do well breathing deep at night. I caught this with my sports watch indicating my oxygen was dropping to 84 intermittently throughout the night. I have a sleep study scheduled. Not sure if it is due to my rib damage or from the induction therapy.

Hi I am in early stage of remission and for the past 6 mths have broken out in a rash on my foot which will not go away. As soon as it gets hot it itches and breaks out in pimply like sores. Dr had given me creams which helps a little bit then it comes back. Is this common.

Hello, I am going to be starting the process of CarT with Carvykti & will be going to City of Hope or UPENN. If there is a member / members who have had CarT with Carvykti at UPENN & would be open to talking with me about their experience, I would appreciate it! Thank you