MSK Vaccine trial experience?

Treatment / Research
1

Hi everyone

Our girl just finished her immunotherapy and we are weighing the option between DFMO and MSK’s vaccine trial to prevent relapse. Does anyone have experience with the whole MSK’s vaccine trial?

What we know so far is that she will be getting vaccine 7 times and during a year she is getting vaccines, she will get MIBG scans and bone marrow biopsy 3 times.

If anyone can share anything at all, we will be very appreciated!

Thanks a lot in advance,
Emma

2

Hi Emma,

We did it a year and a half ago, overall it is way easier on the family than other parts of the protocol. The first few weeks are hectic but really the majority of the time we spent at MSK was waiting for scans.

I think the first critical thing you need to work out is if you have insurance coverage and a place to stay in NYC when you come for treatment.

Do you have any specific questions? Or things that are worrying you about the vaccine?

4

Hi Sam . We are also in Australia. Hoping to do the vaccine with msk. My grandson was stage 4 amplified. Had all his treatment in Australia but unfortunately relapsed. We are now doing the DFMO trial in Australia but unfortunately we got the control group so no DFMO. Any tips for us. We are hoping to go to the us after treatment late October 2020

5

If you are doing the relapse DFMO trial is is very different to the maintenance trial. They use far larger amounts of DFMO in combination with chemotherapy.

To be honest I would focus on the current relapse, there are only a few options in Australia, I hope you can do antibody as well after the tumor is cleared or shrunk.

Once you are in remission the only options I know about are overseas, there is talk of the vaccine trial moving to more hospitals, @Jelena is trying to get the DFMO maintenance trial into Australia but not all the oncologists back bringing it or trust the results.

I really wish we had more options in Australia, Hu3f8 would be enormous for us on so many levels. Not needing to cross oceans for a vaccine trial would be huge as well.

6

Hi Jan and Sam,

I’ve already been in touch with Tameka regarding the vaccine, but if you wish you can contact me on jelenamagic27@gmail.com. Happy to help any way I can.

Best wishes,

Jelena