Are people making dietary changes after CAR T cell therapy ?

Welcome to Connect, @rogweig. Thank you for sharing your wife’s story of CAR-T therapy for her Acute Lymphoblastic Leukemia. It’s wonderful to hear she’s been doing so well.
I haven’t seen any specific discussions within the group of CAR-T recipients regarding their diet changes. But this has potential for a great discussion so hopefully more members will pop into the conversation with you.

What encouraged you both to change diets to abruptly?

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.

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?

Thanks for the comments. My wife was diagnosed with acute lymphoblastic leukemia in March of 2021. She got a referral to UC Davis Medical Center in Sacramento. When she arrived there she was in pretty bad shape. They couldn't even get any bone marrow on their first try. She wound up being treated there for 34 days and then for several weeklong chemo treatment stints over the next several months. The chemo put the ALL in remission by September. Unfortunately, the ALL returned by early Aug. 2022. That was the first time we ever heard of CAR T Cell Therapy. We met with our health team pretty much thinking nothing else could be done. But our doctor said, "Do you want to go for a cure?" My wife doesn't remember those words, but I do. She underwent CAR T Cell in late September, '22. There were many ups and downs and scary times. But she's been in remission since Nov. '22. After much reading about diet and cancer, we started by cutting as much sugar as possible: No crackers, chips, cereal, products in boxes and bags, etc. Say bye bye to ultra processed foods. She's also had gut problems for the last 40 years and doctors never really knew what caused it. After more study, we cut out most of the fiber, carbs and certain oils from our diet. Her gut problems vanished. Now we eat my mostly beef, butter, bacon and eggs with some fish and fruit. She's lost about 30 pounds. I've lost about 20. We both are very active. She plays pickleball every day. The best part is the weight has stayed off and the way of eating is so easy. We have given vegetarian and vegan styles a try in the past. Food preparation and shopping were much more difficult and time consuming. This is much easier and we're generally never hungry between meals, which has ended the snacking on crap food. However, we've been taught that a high fiber, high carb and low fat diet is what we should be eating. Personally, I think that advice is wrong and has always been wrong. However, maybe the best thing people can do is cut out the ultra processed foods, sugar, seed oils, soda, empty calories, etc. Unfortunately, doing that is very difficult because so many harmful foods are made to be addictive. But we've done it and hope to continue doing it. Still, it's always nerve wracking when she has blood tests and bone marrow biopsy tests. I doubt those feelings will always be there, and hopefully for a long, long time.

This is an eye-opening documentary on diet, nutrition and health. My guess is that most people have no idea.
Apparently I can't paste a link to the movie here. But you can look it up on YouTube. It's called FAT: Why are we still getter fatter despite ALL the healthy diets. It is well with
worth watching, as is Part 2.