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

Welcome to the CAR-T Cell Therapy group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who have experience with CAR-T cell therapy or are caring for someone on CAR-T cell therapy. There are so few people who have experience with this new cancer immunotherapy. Together we can learn from each other, support one another and share stories about living with cancer and coping with the challenges of treatment.

Let’s chat. Why not start by introducing yourself? When did you or your family start therapy? How are you doing today?

@smokie

He is doing pretty well. Still gets tired though.
Not the worst thing. He is having immunoglobulin shots as he had a bad reaction to the infusion.
Thank you for asking.

Jump to this post

Greg is doing well. The immunoglobulin shots worked for him and brought everything to normal. He still gets tired, but overall is doing well.
His Next Petscan is in January. I am great!

REPLY
@smokie

Greg is doing well. The immunoglobulin shots worked for him and brought everything to normal. He still gets tired, but overall is doing well.
His Next Petscan is in January. I am great!

Jump to this post

What a relief that must be for you, @smokie. Fatigue is a reality for many who have had cancer treatment, during and longer term. Members are talking about cancer-related fatigue in the Managing Symptoms group (https://connect.mayoclinic.org/group/cancer-managing-symptoms/) in this discussion:

– Fatigue and cancer treatment https://connect.mayoclinic.org/discussion/fatigue-in-cancer-treatment/
You may wish to read some of the coping strategies members share.

REPLY

Dave just had another regularly scheduled checkup at Mayo Hematology. He is cancer-free since the CAR-T in May-June 2018. But he's still immunosuppressed, as his pneumonia in January really affected his immune system–which hadn't really rebounded from CAR-T, of course. But RBC and platelets are back to normal range and his WBC, neutrophils, etc. counts are improving as time goes on. He hasn't been sick or had any infections since–so that is good. But since he hasn't had any repeat infections, he is not eligible for any gamma globulin protocol. But we are glad that he is feeling fine and continues to work. The big change we have is that he has a new job and we have relocated. A word of warning to other cancer patients/those with serious illnesses: It can be against the law for your employer to fire you because you've been sick, and, particularly, you've been increasing the company's health insurance rates. But what they can do is "eliminate your position" and downsize you. The company may give you severance or other benefits for a while to, well, CTA is the usual acronym. Then the company changes the name of your position and hires someone else to do the same job you've been doing. It's legal. Of course, then the person who's been downsized my not be able to find another job, afford the COBRA; or, if another job is found, have health insurance as comprehensive as what he/she had at the former job. But sometimes things do work out even after things like this happen. The moving process is never easy or smooth; finding a new house, going through the buying the new one/selling the old house, dealing with all the packing and moving. And it always it takes several months for all the boxes to be unpacked and updates are finished (like painting walls!). But one gets through it. Things could be worse.

REPLY
@annmillercarr

Dave just had another regularly scheduled checkup at Mayo Hematology. He is cancer-free since the CAR-T in May-June 2018. But he's still immunosuppressed, as his pneumonia in January really affected his immune system–which hadn't really rebounded from CAR-T, of course. But RBC and platelets are back to normal range and his WBC, neutrophils, etc. counts are improving as time goes on. He hasn't been sick or had any infections since–so that is good. But since he hasn't had any repeat infections, he is not eligible for any gamma globulin protocol. But we are glad that he is feeling fine and continues to work. The big change we have is that he has a new job and we have relocated. A word of warning to other cancer patients/those with serious illnesses: It can be against the law for your employer to fire you because you've been sick, and, particularly, you've been increasing the company's health insurance rates. But what they can do is "eliminate your position" and downsize you. The company may give you severance or other benefits for a while to, well, CTA is the usual acronym. Then the company changes the name of your position and hires someone else to do the same job you've been doing. It's legal. Of course, then the person who's been downsized my not be able to find another job, afford the COBRA; or, if another job is found, have health insurance as comprehensive as what he/she had at the former job. But sometimes things do work out even after things like this happen. The moving process is never easy or smooth; finding a new house, going through the buying the new one/selling the old house, dealing with all the packing and moving. And it always it takes several months for all the boxes to be unpacked and updates are finished (like painting walls!). But one gets through it. Things could be worse.

Jump to this post

I can relate to getting right sized out of work as well Ann. It happened for me just a few months before I was diagnosed with Lymphoma. We did not however relocate this time, (We did relocate five times during my career) always tough. I concur it is tons of work. Glad to hear Dave is doing well. I am 15 months post Car T infusion. I did receive six Immunoglobulin infusions to get my immune system up within a normal range. I continue receiving regular monthly blood tests. I assume Dave is in the same process? Did your relocation leave you within a reasonable distance to Mayo Clinic for the follow up checkups?

REPLY
@smokie

He is doing pretty well. Still gets tired though.
Not the worst thing. He is having immunoglobulin shots as he had a bad reaction to the infusion.
Thank you for asking.

Jump to this post

Glad to hear your son is doing well Barb. Interesting hearing your son had a reaction to his immunoglobulin infusions. I did as well which surprised my oncologists. In my case, they changed the product and provided some pre infusion medications. My reaction surprised them as apparently this is not prevalent. If you folks have the time, I encourage you to check out the Cancer: Managing Symptoms site on Mayo Connect. There may be some information shared by others you folks can use to help get past the tiredness.

REPLY
@grandpabob

I can relate to getting right sized out of work as well Ann. It happened for me just a few months before I was diagnosed with Lymphoma. We did not however relocate this time, (We did relocate five times during my career) always tough. I concur it is tons of work. Glad to hear Dave is doing well. I am 15 months post Car T infusion. I did receive six Immunoglobulin infusions to get my immune system up within a normal range. I continue receiving regular monthly blood tests. I assume Dave is in the same process? Did your relocation leave you within a reasonable distance to Mayo Clinic for the follow up checkups?

Jump to this post

Yes, he has regular monthly blood tests. He had one at Mayo's last week, of course. Dave sees his new hem/onc in our new town at the end of the month for the first time and will have another lab then. Our former town was about 1.5 hours closer to Mayo's than our present home. But driving doesn't bother us and it is still a driveable distance for us.

REPLY

Hi everyone! No we are not yet back in Africa. The criteria for our return is for Mark, my husband, to have one year of clear PET scans after the completion of the most recent treatment. Though he was in complete remission one month after his CAR-T treatment, a lymphoma tumor popped up ON HIS LEG, of all places, about three months later. That was successfully radiated, but on the same PET scan that showed the success of eliminating THAT tumor, a NEW one appeared near his adrenal gland. He then started on pembrolizamab (Keytruda) to stimulate his "wimpy" T cells. The NEXT two scans showed that same stubborn tumor REMAINING in place. It was no larger and no new spots appeared, but, all things being equal we all wanted that thing GONE! It was determined that it too could be radiated, so that's what we are doing at the present moment. His is also continuing with the Keytruda. The knowledge that we cannot possibly return to Africa for a long time yet is sad. The outlook would be much more optimistic if we hadn't had so many birthdays before Mark was diagnosed. Then we could just persevere until we finally defeat this cancer once and for all! But the longer this goes on, the closer we are to the age when we really should retire anyway. We are trying to find a professional role we can do from the U.S., but as you see, we are still regularly engaged in medical appointments, so that narrows the range of possibilities. It helps when we reflect on the fact that these two years since his diagnosis are a "bonus". He was pretty sick by the time we arrived at Mayo and didn't look like he would be around much longer. But he's still alive and feels quite well. So, with all of the "bumps in the road" we still have much to be thankful for. Thanks for "listening". It's sort of therapeutic to spell it all out.

REPLY
@raemark2010

Hi everyone! No we are not yet back in Africa. The criteria for our return is for Mark, my husband, to have one year of clear PET scans after the completion of the most recent treatment. Though he was in complete remission one month after his CAR-T treatment, a lymphoma tumor popped up ON HIS LEG, of all places, about three months later. That was successfully radiated, but on the same PET scan that showed the success of eliminating THAT tumor, a NEW one appeared near his adrenal gland. He then started on pembrolizamab (Keytruda) to stimulate his "wimpy" T cells. The NEXT two scans showed that same stubborn tumor REMAINING in place. It was no larger and no new spots appeared, but, all things being equal we all wanted that thing GONE! It was determined that it too could be radiated, so that's what we are doing at the present moment. His is also continuing with the Keytruda. The knowledge that we cannot possibly return to Africa for a long time yet is sad. The outlook would be much more optimistic if we hadn't had so many birthdays before Mark was diagnosed. Then we could just persevere until we finally defeat this cancer once and for all! But the longer this goes on, the closer we are to the age when we really should retire anyway. We are trying to find a professional role we can do from the U.S., but as you see, we are still regularly engaged in medical appointments, so that narrows the range of possibilities. It helps when we reflect on the fact that these two years since his diagnosis are a "bonus". He was pretty sick by the time we arrived at Mayo and didn't look like he would be around much longer. But he's still alive and feels quite well. So, with all of the "bumps in the road" we still have much to be thankful for. Thanks for "listening". It's sort of therapeutic to spell it all out.

Jump to this post

Hi @raemark2010, It is good to get an update from you and Mark. It must be disappointing and frustrating that the lymphoma has re-appeared in a couple of places. Thankfully there are treatment options that appear to be working. Yes, writing can be therapeutic. You're a very good writer and I can see that you weigh the setbacks and blessings, and find the hope and gratitude where it lies ready for the plucking.

REPLY
Please login or register to post a reply.