.continued.. I'm now on day 136 after transplant and I feel pretty good. I still have no stamina. I tire very easily. I walk a mile everyday on my walking pad. Walking is very important. But I still battle with chronic fractures/chronic pain in my back. Unfortunately the fractures and the pain hold me back from having a normal life. I'm still MRD negative and should be so grateful, but my back pain steals my joy. And now, i have peripheral neuropathy in feet, legs and hands. We figure that the neuropathy is a late side effect from the melphalan. Lyrica is helping with the neuropathy, it took over a month to start feeling any benifit. I started my maintenance therapy on day 126 post SCT. We would have started maintenance earlier but my transplant oncologist was not communicating results in a timely matter with my local oncologist. I am getting Darzalex (daratumumab) shot every 4weeks, dexamethasone 8mg day of and day after Darzalex, Revlimid (lenalidomide) 10mg everyday with no breaks. I'm very glad I did the stem cell transplant and hope I never have to do it again but I would reluctantly.
I hope this helps. Prayers for you!

Hello BettyJo - Please read the Dana-Farber Press Release regarding their Latest. In Dec 2023, they now acknowledge that the SCT is Best Kept In Reserve.

https://www.dana-farber.org/newsroom/news-relea...

In 2010, the Determination Trial became the basis why Everyone was told they must get a SCT. Problem is, Dana-Farber used the very worst results as the justification for their statement. Then they managed to convince the entire MM Treatment world that this was mandatory.

A few months back I read the Determination Trial. There's two guide posts - one is Time to First Relapse and the second is Overall Survival Rate. Even though the SCT typically provides a longer time before the First Relapse, even for the people that had the Worst Response from Treatment, their Overall Survival Rate was Better without the SCT.

The reason Dana-Farber now says - Kept the SCT as your Last Resort is they now acknowledge the damage that the SCT does to the immune system results in more frequent infections of a more serious nature. This is their words in their Latest Press Release. Still they are soft-pedaling. They say if you have a Very Good to Complete Response, do not get the SCT Early. That doesn't change the fact that everyone's Overall Survival Rate is Better without a SCT.

+++

I have not collected my Stem Cells and I have not had a SCT. I'm Cancer Free and Not taking any MM Meds. I'm just now coming up on 3 years since I was diagnosed.

In 2021, Induction of DarzFasPro+RVd (now July 2024, the new FDA Standard of Care for newly Diag MM). I was taking 8 grams C3 Curcumin from day one, everyday throughout treatment and I continue with multiple forms now.

I Started a Plant Based & additional Supplements a year ago (was previously a Standard American Diet).

I only get monthly full MM Labs and Quarterly blood sample clonoSEQ testing. As long as I'm Negative, no MM Meds. In the event of MM Activity, I'll take a very brief (one to two months) of MM Meds (probably Revlimid and Dex but possibly other options will come available over time), coupled with full Weekly MM Labs to Monitor its Demise and back to No MM Meds.

I'm on Medicare+Supplemental. My Plan and Protocol is All covered by Insurance and my Onc is on-board with helping me this way.

I've Posted a Detail history at my Story @A MyMyelomaTeam Member.
Hope it works well for you - it's a much healthier way to Live.

When a person does not Respond to Treatment and Relapses Quickly, a SCT can be life saving. Now there's Car-T and Bi-specifics that can also aid in recovery.

Mentioned Users

A MyMyelo...

DETERMINATION trial subgroup analysis suggests potential strategies for individualization of myeloma treatment | Dana-Farber Cancer Institute

https://www.dana-farber.org/newsroom/news-releases/2023/determination-trial-subgroup-analysis-suggests-potential-strategies-for-individualization-of-myeloma-treatment

Here's some important References to become familiar with:

https://nutritionfacts.org/ - Dr Greger
https://www.naturalinsightsintocancer.com/ - Dr Brandy
https://blockmd.com/ - Dr Block
FaceBook Forum - Beating Multiple Myeloma with a Naturopathic Approach

Home | Natural Insights Into Cancer

https://www.naturalinsightsintocancer.com/

NutritionFacts.org | The Latest in Nutrition Related Research

https://nutritionfacts.org/

Block Center for Integrative Cancer Treatment, Chicago

https://blockmd.com/

My name is Janie. I'm 55yrs old. I just had my stem cell transplant on April 5, 2024. I was diagnosed Dec 19, 2023. Started induction treatment on Dec 26,2023. I did 4-21 day cycles of DVRd and achieved MRD negative 3-21-24. I had no side effects from the treatment. I'm very fortunate!! On 3-21 i had a full body workup,labs, bone marrow biopsy, EKG, Heart Echo, Pulmonary Function test, Chest Xray, 24hiur urine test..The next week I started preparing for the transplant. This is my journey. 3-29 had a shot of Pegfilgrastim which is a stem cell stimulant to increase your WBC, 3-29 got my central line placed on my chest (painful), 3-31 had a shot of mozobil which mobilizes the stem cells out of the bone marrow and into the blood stream( immediate side effect diarrhea..had 3 episodes before i even left the clinic), 4-1harvested stem cells (painless and took about 6hrs), 4-4 was admitted into the hospital and received my dose of melphalan a very strong dose of chemo (no immediate effect), 4-5 received my transplant (painless and took less than an hour)the next day. They encourage you to walk, do it! For me the side effects from the chemo started about day 4 (nausea, vomiting, diarrhea, mouth ulcers-could barely eat or drink and hair loss-lost all on day 14). It was the worse side effects I'd ever experienced in my life. I felt awful and extremely tired. I was in the hospital for 14days. I ran a fever on day 7, needed 2 units of blood. I was so happy to be discharged. It's hard to get good rest when you are interrupted so many times by the nurses and drs coming in your room to do their job to take care of you. I've been a RN for 15yrs and I don't make a good patient, lol. For the next couple of weeks out of the hospital, I was still very sick with side effects. I needed someone to stay with me for about a month but not 24/7. My husband was able to go to work. It started getting better about a month after the transplant. (To be continued......)

Lots of testing beforehand to make sure you are a good candidate. Your MM team will guide along the way. Ask lots of questions.