anyone participated in Freedom-1?

[sanrioche]

I'm getting ready for my transplant. people from FREEDOM-1 trial reached out and ask to see if I'm interested in their clinical trial. it sounds promising. are there anyone who has participated? it sounds like a great solution to the anti- rejection medications.

[WYOAnne NKF Ambassador]

I really don't know anything about it, but sounds promising. Have they explained what they do so you don't reject your transplant without a need for immunosuppressants?What does your nephrologist think of the study?

When I had my transplant I was in a drug study at the time of my transplant. I was in the study for 1 year, even though the study was 4 years long before it was approved by the FDA.

[sanrioche in reply to WYOAnne]

we will be randomly placed into the control / normal treatment group or testing /experiment group. the main idea is to put my donor's stem cell in me so that my body will not reject the kidney so much.

[WYOAnne NKF Ambassador in reply to sanrioche]

Sounds good to me. If you notice on this site, most that have had a transplant complain about the side effects from their immunosuppressants...hair loss, tremors, fatigue and not able to sleep, diarrhea....need I go on?

[Transplant2018]

This option wasn't available when I had my transplant, but if it had been I would have participated. The procedure does require more on the part of the donor but the majority of the participants thus far have not had to take any immunosuppressants following their transplants.

[sanrioche in reply to Transplant2018]

It sounds like a really good alternative to life long IS medication. It is at stage 3 of clinical trials and the details page on their site is in scientific language, kind of hard for me to understand. I need to see if there are any side effects.

[LisaSnow]

How many years out are you? In the treatment arm do you continue with some immune suppressant meds, or they take them off you?

[sanrioche]

we are scheduling for next February. it sounds like they don't use the meds at all?

[endlesswave]

I was fortunate enough to be enrolled in a similar trial called Medeor 101. Same concept of inducing the donor immune system to eliminate the need for IS drugs. Normal IS drugs are used for the first 6 months and then tapered off. I am still in the drug taper period , but hoping for good results. In my mind there was very little downside with a very nice potential upside. You are also contributing to the advancement of the treatment options for future transplant recipients, which was a big incentive for me due to the genetic nature of my PKD and the potential for my kids to have this disease. Good Luck!

[sanrioche in reply to endlesswave]

thanks for your reply. we got more info this morning. they will have to totally replace my immunity system and put in my donor's stem cells. did you go through similar process? was it taxing on your body? In traditional treatment or this trail, do they determine how much medication based on your match? for example, higher the match, less immunosuppression medication?