CAR-T: Opportunity to Connect

Posted by Bob, Alumni Mentor @grandpabob, Sep 23, 2020

Hello Car T Cell Therapy followers,
I just want to advise the followers of this group that I and others are out here ready to respond to any posts on this site.
I know it is a small group of followers on Car T Cell Therapy due to the narrow scope of this particular treatment.

If anyone out there wants to connect on this group for any reason, I encourage you to do so. There is usually someone not too far away that is more than happy do share a few kind words and some guidance.
Bob

Interested in more discussions like this? Go to the CAR-T Cell Therapy group.

Hi Bob! You sound like everything is good with you.
Greg is doing well. He still has some bouts of “itch and burn” on his forehead and head from the shingles he had in January. It left some nerve damage – but the bouts are getting fewer! He has been golfing with the guys. Still gets tired very easily – but all told is doing great.
We still talk about the wonderful people at the Mayo and the Transplant house!
Take care!
Barb (Greg’s Mum)

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@smokie – Barb

Great to hear from you Barb. Glad to hear Greg is doing well. I have heard that shingles can be pretty frustrating and difficult at times.

Good to hear he is getting out on the golf coarse, exercise I am sure is doing him a world of good for both body and mind. Hopefully all that exercise will continue to build up his energy levels as well.

I am doing pretty good right now as well, Thanks, I have had a pretty good summer given all the Covid cautions we need to take.

Does Greg take part in any winter sports?

All the best to both of you,

Bob

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@grandpabob

@smokie – Barb

Great to hear from you Barb. Glad to hear Greg is doing well. I have heard that shingles can be pretty frustrating and difficult at times.

Good to hear he is getting out on the golf coarse, exercise I am sure is doing him a world of good for both body and mind. Hopefully all that exercise will continue to build up his energy levels as well.

I am doing pretty good right now as well, Thanks, I have had a pretty good summer given all the Covid cautions we need to take.

Does Greg take part in any winter sports?

All the best to both of you,

Bob

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HI! I saw some studies on colorectal cancer, but with kras with specific mutations, I would like to know if you know researches already tested in humans that have resulted.

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@lorenna

HI! I saw some studies on colorectal cancer, but with kras with specific mutations, I would like to know if you know researches already tested in humans that have resulted.

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@lorenna, my understanding is that despite CAR-T cell therapy's success in treating blood cancers — e.g., leukemia, lymphoma, and myeloma — CAR T-cell therapies have had little success in solid tumors, such as colorectal cancer. Studies have not yet included large population human trials.

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@smokie

Hi Bob! You sound like everything is good with you.
Greg is doing well. He still has some bouts of “itch and burn” on his forehead and head from the shingles he had in January. It left some nerve damage – but the bouts are getting fewer! He has been golfing with the guys. Still gets tired very easily – but all told is doing great.
We still talk about the wonderful people at the Mayo and the Transplant house!
Take care!
Barb (Greg’s Mum)

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Hello @smokie – Hello Barb, I am just checking in with you today.
I hope this note finds Greg and you both well.

Is Greg getting back on the golf course this summer?

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Hi Bob!
Everything good here! Enjoying summer. Yes, Greg has been out golfing- even took his young Grandson (11 years old). Thanks for “touching base” and have a wonderful summer!

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My ALL has returned 3 years after a bone marrow transplant. Now I am being scheduled for CAR T-cell. I’ve been told I could probably plan on returning to virtual teaching 2 months after the procedure, which is much better than the year it took me to get back in the classroom after BMT. Does that sound about right?

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Hello @dbthemathteacher – Welcome to Mayo Clinic Connect.

As someone who has received Car T therapy, I am happy for you that you have been scheduled for treatment, it can be very rewarding after going through many previous types of treatments.

From what I understand, the recovery time can differ greatly between patients, age, physical condition all play a part in the recovery I was told. I personally would not have been able to teach a class 2 months after treatment. (Though it would not surprise me if some have) I am from an older demographic however which can be a factor in speed of recovery. (I was still very weak physically and psychologically at that point)

I encourage others following this site to help you with information they can share of their experiences with Car T.

When are you scheduled for your infusion?

Keep in touch and take care.

Bob

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@grandpabob

Hello @dbthemathteacher – Welcome to Mayo Clinic Connect.

As someone who has received Car T therapy, I am happy for you that you have been scheduled for treatment, it can be very rewarding after going through many previous types of treatments.

From what I understand, the recovery time can differ greatly between patients, age, physical condition all play a part in the recovery I was told. I personally would not have been able to teach a class 2 months after treatment. (Though it would not surprise me if some have) I am from an older demographic however which can be a factor in speed of recovery. (I was still very weak physically and psychologically at that point)

I encourage others following this site to help you with information they can share of their experiences with Car T.

When are you scheduled for your infusion?

Keep in touch and take care.

Bob

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We are still in the insurance approval stage, but I am expecting to probably be in the hospital the first part of January receiving the T-cells back. I’m 54 and pretty well recovered from the BMT 3 yrs ago, so I’m hoping I’m strong enough to be back at the school in March. Even if not near full strength, at least hopefully strong enough to teach virtually.

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@dbthemathteacher

We are still in the insurance approval stage, but I am expecting to probably be in the hospital the first part of January receiving the T-cells back. I’m 54 and pretty well recovered from the BMT 3 yrs ago, so I’m hoping I’m strong enough to be back at the school in March. Even if not near full strength, at least hopefully strong enough to teach virtually.

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@dbthemathteacher – That is great news that the treatment is just around the corner. I am so glad to hear that you are well recovered and in a good position. Doing all you can now to stay strong, will leave you in a great spot for treatment in January.

I concur strong enough is a wonderful start after any treatment.

Do you have a strong support system for the first weeks after infusion?

Now I am just curious, how many teaching sessions do you typically have in a day? ( I take university classes but keep it to only one per day)

Have a great Day!

Bob

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Thanks, Bob. I have a wonderful support system with a great wife and 3 grown daughters (2 with spouses).
I teach high school math, with no more than 3 classes per day. I’m not usually actively teaching more than 45 minutes to an hour tops per class. The rest of the day is spent one-on-one tutoring, grading, preparing future lessons, tests, etc.
My marrow biopsy finally came back and now the oncologist decided I need to be admitted tomorrow for 5 days of chemo. I think they had been treating this leukemia a little too casually from the blood tests, but now have gotten more urgent after seeing how rapidly it is spreading through the biopsy. I’ve been pushing for faster action all along as I remember how bad I got the first time. Hopefully I can get some more info on how the timeline for the T-cell therapy is coming along.

Darrin

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Hello Darrin, I am so glad to hear you have a great support system, I found it so comforting to know that there was a group of people I could count on for help when I needed it which was often.

It is good that you have been advocating for yourself to get quicker action for your condition. When we are waiting for results and treatment, sometimes it seems there are as many twists and turns as a mountain road.

I wish you all the best during your Chemo treatments.

Please reach out at anytime.

Is your treatment centre a close to where you reside?

Bob

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