Hello everyone and thank you in advance for reading and any input you can provide? Has anyone had any experience or information related to after induction therapy opting not to proceed with a ASCT although eligible and it was recommended (not frail)? I understand the standard of care and process entailed therein however have not heard much detailed information or testimony as to why anyone opted not to proceed with ASCT (what factors were that decision was based on) and what was their outcome was? I am trying to balance both side of the coin. I am scheduled for my ASCT consult on October 15th at the Mayo Clinic. Any advice or information is greatly appreciated. I want to ask all the right questions and explore all options and avenues of care. I am 55, was diagnosed with Multiple Myeloma on July 9, 2025. To my disappointment I learned (in preparation for an evaluation with a MM specialist) my hematologist/oncologist identified my diagnosis date as 5/22 and test results support the diagnosis on this date. However I was not verbally informed until 7/9, after a PET Scan on 6/17 and a bone marrow biopsy on 6/19, that I have Multiple Myeloma and started induction therapy on 7/16 with the 4 drug regimen D-VdR. I am a good patient and believe in medicine and my drs and follow instruction/advice to the tee. I am that can do person. However I realize I need to be extremely proactive and informed in this case with my Myeloma. I want to be the co-pilot versus a back seat driver and plan to educate myself and utilize the amazing resources and network provide by the HealthTree Foundation. Denise

I decided to stop taking 5mg of Revlimid this past spring. I had an ASCT in 2020. My m protein has been non detectable ever since. Has anyone else stopped taking the maintenance chemo? I get my m-protein monitored once per month.

Has anyone had a seizure during an ASCT? The doctors believe it was from the wrong dosage of chemo and a combination of lack of kidney function (on dialysis). It was very frightening to my family and we are hoping it was a one time event. Any experience with this?

Antes del transplante no tenia dolor y no tengo lesiones. Nunca recibi radio. Ahora a 4 meses del transplante tengo mucho cansancio, dolor en todas las coyunturas y en mis musculos o piel, no se identificarlo bien, es como si me hubieran dado una paliza y me doliera todo, tambien mucha rigidez al levantarme y dolor en las manos. Esto comenzo a 2 meses del transplante. Alguien mas le ha pasado de esa forma? A eso es que llaman neuropatia?

My Name is Emma Groff I was diagnosed in July 2019 Had right femur pain for five months. Woke up one morning went to get out of bed my femur broke. I didn’t know what was wrong at the time. My daughter took me to the ER . X-rays showed my femur was broken. I was amitted to the hospital for further testing and was told I had multiple myeloma. It was stage one started treatment in August and was told I was in remission in October. Talked to a doctor at Penn Medicine Abramson Cancer Center in Philadelphia Pennsylvania. Went to Philadelphia in February for stem cell harvest had chemo in March. I have been in remission ever since. Had two back surgery last year. My doctor wanted to make sure my back issues weren’t coming from multiple myeloma. The last one was in November and my doctor had me get a biopsy no cancer cells. Than had a pet scan no lesions. So my journey has been a breeze compared to most.

How can I find a Myeloma specialist near me?

anybody out there have Myelofibrosis?

We need your voice to help improve cancer care for everyone. HealthTree is supporting a new study led by Dr. Craig Cole and Dr. Jeff Zonder at the Karmanos Cancer Institute. This important research explores how race, ethnicity, and socioeconomic factors impact access to care and treatment outcomes for people living with incurable cancers. 📝 If you are 18 or older and have a self-reported diagnosis of myeloma, you can help by completing a 25–35 minute survey. Your experiences and insights can make a difference in creating a more equitable future in cancer treatment. JOIN 👉https://www.healthtree.org/myeloma/curehub/private/research/I0DOs0JGGcOEncW1Vc67?utm_source=social_media&utm_medium=meta&utm_campaign=smmsurvey&utm_content=meta Together We Care. Together We Cure.