CAR-T Cell Therapy: Introduce yourself and connect with others

Wow, Ann! You and Dave really have been to heck (not strong enough word) and back. I simply cannot imagine everything you just summed up in a paragraph. You must've been so worried. I bet the others in the group appreciate the tip of maintaining vigilance in taking care with a compromised immune system. This obviously blind-sided both of you.

I'd like to ask you to start a new discussion in the group about this. Maybe call it something like "Staying healthy after CAR-T treatment" and gather tips from members. What do you think?

Hello CAR-T Support Group! I thought I'd give you an update on my husband Dave, who underwent CAR-T in May-June 2018. Dave was doing very well--he was never sick, working full time since early July and living normally--right up to Christmastime, when he (and I) contracted RSV from our nearly two-year-old grandson (who was hardly sick, thank heavens). Despite our efforts, Dave's RSV progressed to viral pneumonia, and, somehow, he picked up the bacterial form as well (we ha e no idea how) and an intestinal infection (not C-Dif). His life was in danger on Jan. 3 and 4, but he pulled through. Serious viral infections can also cause the bone marrow to slow down and not produce enough red and white blood cells, and that happened to Dave after his pneumonia was getting better. He was extremely neutropenic and anemic, and his immune system had to be boosted. He spent more than three weeks in our local hospital, a regional trauma center, and Dave's Mayo hematologist was in consult with the ICU doctors, the hospitalists and our local hematologist/oncologist throughout his stay. He lost 20 pounds. We had to postpone his regular post-CAR-T checkup in mid-January, but we rescheduled it for Feb. 7 & 8 and he was well enough to go. His blood work showed that his immune system is recovering and, even better, his PET is still clear. Today he went back to work full time, but he will still be wearing his Vogmask and using vinyl gloves at work and when he is outside the house until flu season is over. Be careful everybody! We thought we were, but we were wrong. Even though you feel fine and are living as normally as possible--but if you've had CAR-T your immune system just isn't normal. We found this out the hard way.

@grandpabob, thank you for sharing your story. I'm glad you are doing so well.

Hello Valerie,
I went through what seems virtually them same last year at age 62. I had Car T infusion August 1st.
Our take away is to believe what the doctors and staff tell you. I experienced all of the side effects they outlined. After day 2, I spent 2 weeks in the hospital, one week in intensive care. I remember virtually nothing of those weeks. Your mom will require all the care and support you and your sisters can provide. The therapy took a lot out of me. I was so thankful to have the family support I had. The doctors and staff at Mayo were extremely supportive as well. Never be afraid to call back to the station if you feel something is off. My wife feels it was important that she stayed with me 24-7 while I was in the hospital. Be patient, recovery took some time. I felt cold all the time for at least 2 months after the infusion. I experienced a lot of joint pain for at least four months. I found it difficult to eat for a long period of time. Nearly six months later. I can happily say I am doing quite well physically, I am taking long walks and am even back into participating in light sports. It was tough but so worth it.
All the best wishes from me to your Mom and entire family.
Bob

Hello, my name is Valerie and my mother, Phyllis (age 61), will infuse her CAR-T cells on 2/11. We are from Des Moines, Iowa. She was diagnosed with Diffuse Large B Cell Lymphoma in September 2018. She went through two rounds of R-CHOP and R-ICE and one round of GemOx but the cancer continued to progress very rapidly. I will serve as her caregiver along with my two sisters, Venessa and Vania. Interested to hear others stories and advice for us.

That is indeed great news! Thanks for letting us know! Wow, what a road you've been on. Prayers for you continue ….. Mark & Rae

Greta--Wonderful news! So glad to hear you will be home for all the holidays. (We know how it is to miss them. When Dave had his autologous stem cell transplant, we were at Mayo's from November -December 29. Bummer.) I'm sure Graydon will be gaining strength every day, he just has to be a little patient and soon he will feel more like himself again. Looking forward to hearing how he is progressing.

I wanted to give you all a day #45 update. Although Graydon is 25lbs lighter and weak, his counts are stable enough to be “discharged” from the Mayo . We are overwhelmed with gratitude and grateful we will be home for Thanksgiving. Dr. Ansell yesterday he said the PET scan and bone marrow biopsy results are encouraging. He thinks Graydon’s lag in bouncing back is due to the accumulated impact of chemotherapy/radiation he has endured over the last 3 years. Dr. Ansell described the situation in terms of a football analogy—“it is like you have just caught a Hail Mary pass in the end zone—you made the touchdown, but you got piled on and the wind kicked out of you.” So we need to regroup, enjoy the holidays, and be grateful that we have gotten to this point. Thanks to each of you for the help and advice you have given us through the Mayo Connect portal. We have greatly appreciated it. Hope we can continue to add to the CAR T community with our experience. Special thanks to @annmillercarr, @raemark2010 , @colleenyoung

Can't help you with the menu. Dave's experience was--uh--a little different. If some of the nurses, etc. are talking about a patient who, in the middle of the CAR-T process, had a serious complication (mesenteric nodes swelling up because of CAR-T inflammation, enclosing a part of his small bowel and causing an obstruction, which perforated, and had to have 72 cm of his small bowel removed three weeks after his CAR-T infusion), well, you can guess who that was. So Dave is going through some adjustment as far as diet goes, but it has much more to do with his bowel resection than it does with the CAR-T.

Hi Greta! I don't have any slam dunk recommendations on good foods post CAR-T. Mark wanted to get away from refined sugar as much as possible. I was afraid he wouldn't gain his weight back, but he did just trying to "eat healthy". I try to get plenty of veggies and fruit, not much in the way of red meat (well, okay once in a while) but quite a lot of chicken and tuna at least once per week. Oh, yes, he snacks on various nuts You'll notice that word "trying" in my third sentence. I don't have this one nailed down. We are definitely a work in progress. I hope Grayson continues to feel better!