Multiple myeloma with a large plasmacytoma - whose on first, radiation or chemotherapy?

[@Kim-ut2xr]

I just stumbled upon you video tonight. Thank you for sharing. My husband was diagnosed with Stage 3 MM, with a 1q gain, in June. He's responding fairly well to chemo. I look forward to joining your fb group and learning more. Thanks again. I'm wishing you all the best from Maine.

[@orscrub3161]

how is your husband? i noticed this was posted 4 years ago

[@reddman1723]

Hi appreciate your video, felt it was an honest open approach to a very sensitive not very well known problem disease, MM. Thank you, not many, including myself are willing to discuss a sensitive subject like this in an open forum. I applaud those willing to do so and hope/pray things go well for their positive outreach to individuals looking for answers.

[@michellestringer6107]

Thanks for sharing your journey. My wife has the same diagnosis and is battling with how to combat and win this fight.

[@filomenojuarez7734]

Thank you for sharing your personal experience with MM. I recently diagnosed with SMM and having some plasmacytoma (EMP) symptoms. Scheduled for a FDG PET-CT in a couple weeks. Hope to find some answers adn good avenues for addressing what is found.

[@caliz56]

Thanks a lot for your site.I am in the process of determining what stage.

[@andre7733]

Hope your on the mend @Mr.Tony Blau

[@CircleB-ig9mk]

Thank you so much for sharing this! Oddly enough, I found my own plasma cytoma as well. I told my doctor that I felt like something was growing in my brain and trying to get out my ear. Of course he laughed at me. So I found another doctor! That doctor sent me immediately to a ENT, who found nothing so sent me immediately for an MRI. Within 48 hours I was seeing a neurosurgeon at UCLA. They thought that it was a mucus pocket so scheduled a surgery, where after hemorrhaging on the table, they discovered was a plasma cytoma. I did radiation therapy, infusion therapy, two surgeries, went full-blown multiple myeloma, did a stem cell transplant, and then now on Ninlaro for life. I will take any and all advice you have for me!!!! I would also like to know if it's possible for me to get my "dashboard" as you called it?? I hope you're doing well! 🙏🏼💕

[@all4cure50]

Thanks for your message and for sharing your disease history. You can register for All4Cure at www.all4cure.com. We would be honored to have you join >800 other patients with myeloma. Best wishes!

[@CircleB-ig9mk]

@@all4cure50 Thank you. I don't look into it.

[@charleswest6372]

Was diagnosed 2019. Am getting radiation therapy now and hopefully will end the nightmare.

[@rosiorain]

I wish I came across this last year. I presented similar to you however I did not have bone marrow involvement. However if I had of known what I do now. I would have pushed for genetic testing on the pelvic biopsy and pushed for Chemotherapy 1st as how you explained it is so logical but I suppose only when you know. My tumor was larger than yours measuring 11x9x11cm and shrink tumor with chemo so when they hit me with radium the field would be smaller so less damaging to tissue but more importantly less damaging to a large surface of bone marrow and my stem cells for transplant. My disease progressed with 2-3 months of completing radiotherapy, I went from solitary to 5 new extramedullary Plasmacytomas but still no bone marrow involvement, had 6 cycles of VTD 1 tumor dissapearded, m protein dropped from 19-3 other tumors shrunk but once I stopped again with 2 wks it had progressed. 2 new extramedullary Plasmacytomas and the remaining 4 had went back to original size. Currently undergoing Rd-PACE to try and get me to transplant

[@all4cure50]

Thanks very much for your willingness to share your experience. It is hard to know what to do and I often feel as though I'm flying by the seat of my pant. If you register at All4Cure (www.all4cure.com/sign-up) I would hope that we might be able to help provide suggestions that you and your doctor may wish to consider regarding future treatment decisions.

[@andrewrufo2421]

Thanks for sharing. Good logic.

[@natashab3412]

Ty. ! Family member diagnosed in Dec this yr

[@all4cure50]

My pleasure. Your family member would be most welcome to join All4Cure

[@ss-ib8gm]

If there is no tumor but just multiple myeloma and patient responding good to chemo then do we have to do radiation? We asked if we can do stem cell after this but my mom ‘s doctor said it’s not possible becoz she is 68 and weak after 65 yrs stem cell is not recommended, is it?

[@eileendelgrosso8481]

Just diagnose, pain severe, in my clavicle for 9 months I was sent to orthopedic they sent me to pt I would not go because pain was to much at same time going to ent for dizziness they found on my skull lesions then finally mri to chest . I feel like it has gotten so much worse than it was and o haven’t even begun any treatment

[@all4cure50]

very sorry to hear this. Have you seen an oncologist? Please let me know if I can help at [e-mail].

[@eileendelgrosso8481]

I go to hematology oncology on Wednesday, I’m 64 smoked for nearly 40 years it feels like I am breaking something every night when I go to sleep

[@carolweaver3269]

Can Neutropenia develop into Myeloma? I also have pain in the sacrum Iliac and hips

[@all4cure50]

Neutropenia isnt likely to develop into myeloma but from the sound of the problems you describe I think it would be important for you to be evaluated by a hematologist-oncologist.

[@nancie.]

What do you recommend for the pain the toe?