Hi Everyone, Have any of you been asked to complete a PRO survey during your treatment? PRO stands for Patient-Reported-Outcomes. These surveys are intended to help the research and healthcare communities understand the impact of medical treatments on patients in terms of side effects and disease symptoms. Personally, I have completed such surveys and have found them to be somewhat frustrating, primarily because they tend to be too black or white and lose the richness of nuance and personal experience that are better expressed in our own words. If any of you has experience of PROs, whether positive or negative, I would welcome your sharing of your experience. Did the survey capture the reality of your myeloma experience? Were you satisfied that your answers were providing helpful information about your experience to the research or healthcare team? Did you invest time and effort in your responses or did you simply respond to satisfy the team's request? Finally, do you feel that the survey captured the range, intensity, and duration of the side effects you experienced? Thank in advance for sharing. And good luck on your myeloma journey.

I am new to this post. Diagnosed with mgus in October of 2023. Currently have IGg lambda type with mspike of 1.62 and lambda lcs of 570.Trisomy on fish and 7% plasma cells on bmb 18 mos ago. Kappa slightly elevated at 33. My oncologist has me on 6 mos. checks but says my numbers are going in the wrong direction. My bloodwork is all normal. Scheduled for abdominal mri on Monday for lesion on my right kidney (hopefully a cyst). Is anyone out there similar or been there done that? Also has anyone pursued amyloidosis possibility wiith their oncologist r/t high light chains. would love to hear from you. Thanks to Healthtree for this forum. I know I have a lot to learn.

Some possible challenges that may affect you. Be aware! There is an challege coming before the Supreme Court. The first is that The new Administration is challenging the need to have preventative care which pays for cancer screens paid for by anyone carrying an insurance plan. We will know Monday possibly the impact of this challenge.

Save the date for the Chicago Myeloma Roundtable! 📍Chicago Marriot Southwest at Burr Ridge-Burr Ridge, Illinois 📅May 17, 2025 / ⏰ 08:00AM - 02:30PM CDT Join us for the Chicago Myeloma Roundtable at the Chicago Marriott Southwest at Burr Ridge, May 17th from 8:00 am-2:30 pm to hear from top myeloma researchers. The day includes informative and engaging presentations about the latest in myeloma as well as breakout sessions for both newly diagnosed and relapsed/refractory patients. The event will feature two sessions that include extensive Q&A. 🔗 Learn more here: https://healthtree.org/myeloma/community/events/chicago-myeloma-roundtable-2025?utm_source=social_media&utm_medium=meta&utm_campaign=RTChicago2025&utm_content=general #Myeloma #ChicagoMyelomaRoundtable #MultipleMyeloma #CancerResearch #PatientEducation

Was diagnosed in 2004 with MGUS, 2005, smoldering myeloma. Since '05 only being monitored every 3 months with blood work, Igg is now at 5400, was on Zometa then switched to Xgeva(prolia). Now lesion found on front posterior rib and doc wants me to go on the 3-4 cocktail of meds and then to a SCT, don't really want to do the SCT, 2 questions for everyone here, how many opted out of SCT and just stayed with the cocktail of drugs and how your doing, (2) how many are on Xgeva compared to Zometa now and which are better in your opinions.

Basic question here: post BMT my cytogenetics/bone marrow biopsy showed no evidence of disease (awaiting MRD) and all labs normal. Was told that disease will come back, my question is: is the cancer cells somewhere in the bone marrow so low that biopsy does not see it and will not see it until it grows and starts to crowd out the normal cells in the marrow?

Thought this was an app to help with blood cancers . Looks like a cancer Facebook feed.

Before I started treatment three months ago I was weight training One day a week doing deadlifts, bench press, and other heavy weight exercises. I am ready to go back To the weights. Obviously will need to modify these workouts. Does anyone have any idea the best type of Weight workouts to do with myeloma? I am sure Skeletal and rib strengthening is most important. Any thoughts?

Hi All, What are some of the signs of a relapse after SCT? My Kappa's started to move up since early march and now it's at 45 mg/dl. That is causing the ratio to go up around 3.5. My M protein is still undetected. Before the Kappa's started to go up my maintenance treatment was stopped for 3 weeks due to flu. Thank you!

Share Your Exercise Experience - New Research Study Hi everyone, we wanted to let you know about an important new study looking at physical activity in blood cancer patients. Whether you're highly active or find it challenging to exercise, your experience is valuable to this research. About the Study: Quick 8-minute survey Led by Memorial Sloan Kettering Cancer Center & HealthTree Foundation Focuses on activity levels AND barriers to exercise All responses are confidential The results could help develop better support systems for patients struggling with physical activity during treatment and recovery. Who Can Participate: Age 18+ Diagnosed with blood cancer or precursor condition Any activity level is welcome https://healthtree.org/myeloma/curehub/private/research/YS80V1G0YXT0iL8q3gMT?utm_source=social+media&utm_medium=connect&utm_campaign=physicalactivitysurvey&utm_content=general Let's help researchers understand our community's real experiences with physical activity. Every response matters! Feel free to ask any questions below or contact support@healthtree.org.

I thought some might be interested in this event. One of the doctors we recently did a webinar with is speaking. If you are in or around Hicksville New York take a look.

My husband was diagnosed with high risk (stage2)Multiple Myeloma Dec 2024, blood results from his annual physical & asymptomatic, golfer, fit & age62. He’s been on 4 drug regiment with minimal side effects, Dara, Dex, Velcade & 25mg Revlimid for 4 cycles & then after his restaging with results not where they want for SCT scheduled in June, they added 2 more cycles, will wait for another bone marrow biopsy, it’s been 15% since the start of his treatment (no change) his M-spike has gone down from 3.6 to 1.9 but still not zero. They are now suggesting he will need to have Cytoxan chemo treatment (12hr IV) 2weeks before his T-Cell collection. Has anyone had Cytoxan & how did you handle the treatment & managing side effects?