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Hi Kyle, thanks for the article!
I think it was asked/discussed for many times, but are there any plans to offer DFMO in Europe?..
Nothing concrete, no. It’s something we’d like to see happen, but have no official plans for currently.
who is the best to contact in US for dfmo?
I have contacted dr scholler from helen devos children hospital and received already some documents.
we really think about to get there prior or post IT if our daughter stays in remission.
or have you any other usefull informations for us?
Hey there, Dr Sholler and her team are the correct contact for DFMO discussions. The info at https://beatcc.org/contact/ is current.
We are talking about doing the DMFO trial at the moment, when my son is done with frontline in April.
Just got this from Dr. Shollers team:
Thank you for your inquiry. Here is some quick
- Trial costs- there are 6 required visits during the 2 year trial receiving medications. There are 2 answers for costs…IF Dr. Sholler will accept the scans from your home institution, it will be ~$1000 each visit. If we have to do the scans here, it will be ~$20,000 each visit.
- If you scan at home, your visit will be one full day in clinic. If you scan here, it will be 3 days.
- You will be outpatient during your visit here.
- The DFMO is provided by the study, and there is no cost.
- You will have to enroll by 60 days after your last dose of therapy (immunotherapy).
On top of that, you have travel cost etc.
This is recieved yesterday January 2019.
Just wanted to share.
Thank you for your information, Daniel. Its a giant bill for international patient.
Yes it is a massive bill for international patients.
We have just talked to our doctor about it, and he has seen the numbers from the DFMO trial, and are very curious. He would talk to some of his collegues in UK what they thought of it.
Our son will finish his immunotherapy in May, and then we will hopefully join the trial. Our doctor was open to do the scans at home as my son is going to have 8 scans doing a 2 year period anyways and therefore it should be able to align it with the trial.
Then we are “only” looking at a bill of 31.000 dollars over a 2 year period. ( hospital 6000 dollars and travel expenses for the rest )