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

Hi-Anthea here. Had CAR-T early June and will have my PET scan and bone marrow biopsy this next week. I had stem cell transplant (my own cells) and large b-cell cancer came back. Praying CAR-T is working! Glad I found this site.

Day 30 was when I was declared in remission again after a PET scan. At month 14 my immune system is still not great. I may be going back on ivig infusions again in May. It’s really not all that bad though. I contracted a flu bug from my wife and both of us recovered at the same time.

Anyway, good luck. It’s nothing but up from here! Positivity is the best therapy.

I am just finishing Car T at ohsu. Dr Desai is my doctor. I am on day 30. I will find out next week if it worked! I am very immune compromised after everything. I have to get growth factor shots every five days. I didnt realize how long it can takefor immunity to return. My care has been excellent.
Bonnie

It’s never a bad idea to get a second opinion. Having had my transplant at Mayo, I may be a bit biased, but the care I received there is 2nd to none! ☺️
Here is a link you can use to start your request for an appointment: http://mayocl.in/1mtmR63
Just click on the link and follow the prompts for new patient.
There are 3 campuses…Rochester,MN Jacksonville, FL or
Phoenix, AZ.
Do you live near one of those areas?

thanks for the information aim thinking of going to Mayo clinic to see if there in better treatment for me and at what stage i should go

Hi Bob, There can be different stages of WM. Often in the early period of the disease patients don’t require treatment and are in active surveillance. As the M protein increases it can indicate a change in your condition.

I have a couple of informational links for you that might be helpful to learn more about the blood condition.
This from Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/symptoms-causes/syc-20359967
~~
International Waldenstrom’s Macroglobulinemia Foundation is a great source of information too!
https://iwmf.com/
Since you posted here in the CAR-T transplant discussion has your doctor suggested a transplant for you? Have you been diagnosed with Multiple myeloma?

Hi my name is Bob King i live in central Ill and i was diagnosed with Waldon Storm in 2022 and my protein level are at 3700

Thanks for good report on the older fellow! I am 66 and in good condition so I guess folks can place bets on when I can get car- t.
I live in Bend Oregon so I would go to OHSU in Portland. I actually had a team assigned ready for intake when the doctor there noticed I had to fulfill another round of revlimid.
So be it but whenever I go my wife will be my caretaker during in patient portion similar to when I did sst. The hospital has designated facilities for that.
I appreciate all your responses and excited to stay up to date on these topics and people's experiences and hopefully progress!

Hi @oregonami58, There’s no specific age cut-ff for having CART-T Therapy. A patient’s overall health, function and fitness level are more important than age in determining their eligibility for this type of therapy.

There’s a discussion in the CAR-T group that you might find interesting:
~CAR-T - Looking for statistical data for over 70 age group
https://connect.mayoclinic.org/discussion/car-t-data/
And particularly this reply posted by @cdsarmiento, who shared that her husband had his CAR-T therapy at the age of 82!
https://connect.mayoclinic.org/comment/1099324/
When you get to the point of decison making, your doctor and transplant team will be able to assess your overall health and help you determine whether it’s the best course for you.
In the mean time, as you said, keep plugging away on the Revlimid and kyprolis…been successful so far. ☺️
Are you near the transplant center should you require the CAR-T procedure?

For context I am 66 and survivor of mm for 9 years!