Life After Stem Cell Transplant?
I’m getting ready to start the process for autologous stem cell transplant next week. I’m wondering if there will be a point in my future where I have energy and feel good again. I have suffered from terrible fatigue for a number of years now. It would be terrific if I will eventually feel like my old self, but maybe that doesn’t happen?
Hi ChristyAnn, Im 11 months post transplant. I think the key is to exercise as much as you can even while you're at the hospital getting it. Just walking around the room. I requested a stationary bike which I got eventually. And at home those three months, walk in your house back and forth as much as you can or treadmill. Good luck.
I'd like to say one returns to their old self. MM makes that tough. Your self changes and adapting to that change is critical to enduring MM.
Hi Christy Ann, I have MM and I am in remission since my SCT in 2022. I take my remission drug 21 days and 7 days off. I am very fortunate that I have amazing doctors and nurses. I go to the University of Penn in Philadelphia, that's where I had my SCT. I have fatigue some days more than others, but I have to say I am happy that I went on my doctors recommendation to have the SCT. As we all know there is no cure for MM but I have to say I am living my best life and that is all we can ask for in my opinion. Best of everything to you on your MM journey of decisions. Take care!🤗
Hi ChristyAnn - Please search for and read the Determination Trial and the Master Trial.
The most important question is where are your Labs Now, before the SCT.
If induction has returned you to nearly Normal CBCs, K/L Ratio, and Normal Range of the Infection Markers of B2M, CRP, LDH and Especially if your MSpike is 0.2 or less - talk to your Onc about why are you getting the SCT.
Let Labs need to be your Guide. If you ask your Onc correctly, he/she will confirm what I'm about to say.
The Determination Trial had half get SCT and half with No SCT.
Facts from the Trial's Conclusion:
1) The Overall Survival Rate was the Same with or Without a SCT
2-1/2 years ago, my Onc from Johns Hopkins made this same statement to me.
At the time, I did not know how he knew that. I now realize it was from the Determination Trial's Report.
2) When you get a SCT - it will be longer before your first Relapse
This Fact is the reason Oncs say to get the SCT, while they ignore Fact 1)
3) The people with SCTs had More Infections and of a More Serious Nature
4) The people with SCTs Never Regained their Immune System back to Normal.
This was based on their follow-up tracking at the time of the Report
Trials typically run for many years
A healthy Immune System is very Important to Fight Off Serious Infections - typically people with a SCT will Not Regain their Immune System to Normal levels
Many on this Forum that had SCTs continue to get IgIVs to temporarily boost their IgG Immune Response.
Unfortunately, after your SCT you will Not Regain your Normal Health and Stamina
All of that Said:
If you Do Not Return to Near Normal Labs from Induction and you persist to have a High MSpike or Relapse Quickly either During the Treatment or shortly afterwards, then a SCT is a Life Saving Treatment. There are those that need dual SCTs as well.
What the Determination Trial needed to consider is the Sub Categories of Complete Response, Very Good Response, Partial Response, and Poor Response.
Though they know those Stats, they still treated All the SCT Group the Same. Even when they had a Complete Response, they still got the SCT.
In addition, they did Not Report the Complete Response people with No SCT as regards their Relapse rate and the nature of their Infections, etc.
It would have been far more informative to Treat based on Response.
Since they did Not, they use the Single Factor of Sooner to Relapse as the Sole Reason to get a SCT.
The Master Trial is related to Stopping All MM Meds after remaining Negative for One Year. Very valuable to read and understand.
Hi ChristyAnn,
I am 4 months post SCT and I feel terrific! The first few months were a little tough, but now I am getting back to a normal routine and I’m feeling strong and the fatigue has subsided. I am hitting the hiking trails again here in norther AZ , although I have to build up my endurance as I am out of shape due to my treatment over the past 9 months. But I am feeling great, hiking in Sedona, going out with friends and family, and enjoying life again.
There IS life after SCT and I’m living it! Best of luck to you!!
Pam
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