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Are people making dietary changes after CAR T cell therapy ?

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Aug 12 3:23pm | Replies (5)
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@rogweigel

I wanted my wife to have the best possible chance for her Car T Cell therapy to be a long term success. Diet is something we have control over. We've gone to a low carb, low sugar, no seed oil route; basically following a mostly carnivore approach. While there apparently aren't any studies concerning post leukemia diet and nutrition, it seems to me it can't be beneficial if survivors go back to eating a crappy diet full of sugar, oils and ultra processed foods. The only recommendations I've found is a low fat, whole foods approach to eating that eschews red meat. But I've seen no evidence to back up this recommendation. I do know that since changing our diets, both of us have lost weight and our overall health has greatly approved. Are we doing the right thing? I don't know. It seems like we are. I'd love to hear what other Car T cell recipients are doing, what changes they have made, what challenges they're facing.

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Replies to "I wanted my wife to have the best possible chance for her Car T Cell therapy..."
Lori, Volunteer Mentor | @loribmt | Aug 11 1:40pm

Like you, I believe diets can make a huge impact on our overall health and well-being…and helps us avoid issues down the road. I’ve noticed quite a few members change their lifestyles after a diagnosis or health crisis. Many opt for vegan or plant based diets. There are also keto diets, intermittent fasting and then more moderated diet plans such as the Mediterranean Diet.
These are very personal choices and I applaud anyone for making these changes in effort to support a better life ahead. I think whether psychological or physiological, these changes may work to keep them healthy and are a big key to survival.

Of course, then there was a fellow bone marrow transplant patient who seemed to be on the same rotation for followups. We’d often be in the waiting room at the same time. He’d be sitting there with his jug of Mountain Dew or Coke and a bag of Cheetos…I kid you not! In contrast, my husband and I had been following a very healthy Mediterranean Diet for years and my doctors attributed my rapid recovery from leukemia/treatments and the transplant to my active, healthy lifestyle and diet plan. I pushed my chemo pole 4 miles around our hospital floor daily. LOL. I was driven! 😅
I often wonder what happened to that man I met 5 years ago. At the time he seemed to always be struggling, out of breath and wasn’t recovering very quickly. While I really do try to be open minded and nonjudgmental, it was difficult to see him laboring down the hall with his soda and junk food and not think that it was having a negative impact on his health.
Sorry, I digressed…I think as long as your wife is surviving, thriving and flourishing and her doctors are happy with her overall wellbeing, you are both doing the right thing!

I hope you and your wife will be active contributors in our Bone Marrow Transplant, CAR-T Cell Therapy group. Our support group has grown quite a bit over the past few months with just a hand full of CAR-T members. So your input could really benefit anyone else who is about to embark on the process or has questions about the therapy.

There is a current conversation if you’d like to share your wife’s story here:

CAR-T: Opportunity to Connect. https://connect.mayoclinic.org/discussion/opportunity-to-connect/

Where did your wife have her CAR-T procedure?

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