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

To all
I’m in my second cycle of VRd for multiple myeloma being treated at the University of Virginia Cancer Center. So far so good. The only reaction has been constipation. My bloodwork is showing good improvement. My bone pain and itching are gone. I am scheduled to have my stem cells harvested after cycle 4. This is for storage. Hopefully I’ll never need to have a transplant. I am still in a clinical trial for CAR T cell therapy. I will be randomized after cycle 6 to either continue with VRd or do CAR T. I’m a stage 2 patient due to a deleting P17 chromosome.
A note about the constipation. It is very uncomfortable and causes pain around my lower rib cage. I am treating with both colase and Miralax. These otc remedies have not been too effective. I’ll let everyone know whether or not I end up doing CAR T and how it goes.

My guess is that I’m several months out. Trying for the larger part of this month to have my records faxed to Mayo…frustrating, but standard practice. Mayo needs to triage my records to see if I am eligible for treatment. I also have a connection at the University of Oklahoma. Assuming I pass muster, there is a substantial down time to process the T cells, then re-introduce them to my body, and spend at least another month to see the results. Rochester is a more appealing place to summer than Oklahoma.

You are welcome @elwooodsdad , I am so glad to hear you have a solid support system, this is very beneficial to as we meander through life. I can't speak to what is accurate online with various information that is out there, however, a reputable health care provider will have accurate information for you once you are ready to take those steps. One has to keep in mind that Car T is still a relatively new treatment and likely requires some very specific specialties to support a program such as that and as such not all providers can offer this therapy. I am sure you will be provided with accurate information regardless of which health provider you may choose.

Do you know how far in the future you may have to consider this type of treatment?

Much appreciation for your concern and sharing of your experiences. I am convinced that the CAR T information in the public domain has been strained through the legal department due to liability issues. I am blessed with a wonderful wife who is in my corner along with an attorney friend and the prayers of my Presbyterian cohorts. I am an elder in the church and former moderator of this Presbytery. This is scary. I am disappointed in the cancer center here, as I was presuming they are “full service”. They are, up to a point. I am strongly leaning toward Mayo even though it is a 10 hour drive. It’s worth it to be attended to by someone I trust.

Hello @elwooodsdad I can understand the fact that you are scared, news that procedures are not progressing as planned changes how we feel, fear is certainly one of them for many of us. In my journey, I found that Car T side effects were somewhat different for everyone I encountered that had the therapy. This is really not a lot different than many other treatments as even chemotherapy does not work for some, but yet saves many thousands of lives every year. It is important also to note that the published side effects are a possibility but may not necessarily occur.

Making health care decisions can be a trying experience at times, do you have someone that can aide and support you in those?

The things I read about CAR T frankly scares hell out of me. I am pondering a clinic 100 miles away, but my first choice is Mayo. Pleased your experience was positive. I’m closing in on 76, and concerned my audition may not pass muster. I appreciate your time, thoughts and consideration. Heck, I’m scared to death, and thought my cancer provider was full service. Grrrr

Hello @elwooodsdad, I was treated for Lymphoma at the age of 62, five years ago. I had several different regimes of chemo which all failed prior to undergoing Car T therapy. As this therapy was not available where I live, I had to go away to receive it, we had to travel 400 miles. I was away for 6 weeks as you indicate. The side effects of receiving the treatment are wide ranging however my experience is that they were acceptable. I had many of the side effects post infusion such as cykotine release syndrome and a high fever.

The therapy worked very quickly in my case as 90 days post treatment, scans displayed no cancer present.

I would advise you to get proper accurate information on Car T from your health providers as that is always the best source of accurate information.

If you questions about my experience with Car T, please ask, I am happy to share.

How far away do you reside from a facility that provides Car-T?

I am 75+ years old, and have Non Hodgkin’s lymphoma. I was diagnosed last fall, and have had six infusions of RChop therapy. After the third infusion the PET scan showed the issues appeared to have been resolved. After the sixth infusion, the PET scan showed a the lesions were back. My oncologist said he had never seen a turnaround such as this. There are some maintenance infusions we will be discussing. I am getting weaker, but no pain, just frightened. The topic of CAR T therapy is also on the table, which would be done away from home and require an extended stay of several weeks.

The reading I have done on CAR T, makes it sound draconian. I haven’t been examined by Mayo or another clinic, and I question whether or not I’ll be deemed an acceptable candidate, but I am curious as to the experience of those having had this treatment. The reading I have done (Bless God and Google) does not give much comfort. I realize much of what is in the public domain was drafted by attorneys concerned about liability. Can someone toss me a rope?
Many thanks,

Hi, so good to hear from you. Life is precious and we know that even more profoundly when it is taken from us too soon. I hope that my message will ignite a memory or moment of your sister's smile to hold in your heart. I'm sure she had a big smile.

Thank you so much Colleen..That truly means alot to me...very sadly I will inform you my incredible, brave sister JoAnn passed away..Everything failed her and I am now left to cherish my memories and she will be forever in my heart..Your kindness and the support of the Car-T Therapy is amazing..Thank you for all you do..