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 )
This is not update about preventive trial, but still DFMO: https://medicalxpress.com/news/2019-01-potential-cancer-children-neuroblastoma.html
That is very interesting for me, as my son (high risk NBL, mycn amplified, NED) has an ultra rare genetic condition called Snyder Robinson Syndrome (SRS), which is characterised by a lack of polyamines. He responded very well to the treatment and is NED since 2 years. This article strengthens my opinion that there must be a correlation between the good outcome and SRS.
Any thoughts from anyone?
Could you please tell me which country you are based in? You mentioned your doctor will talk to colleagues in the UK so I am curious if you are living in the UK? If so, will the scans your doctor will do over the two years be coveted by the nhs or privately funded?
Look forward to your reply. Thanks in advance.
We are from Denmark.
Our Doctor has workrd with neuroblastoma in UK for two years, but are back in Denmark now.
We are waiting for answer if we can get it covered by Danish healt Care - will have an answer by the end of the week.
Our doctor has approved the trial, after talking with Dr. Sholler.
Just and update - had a chat with an oncology consultant at the Royal Children’s in Melbourne, Dr Martin Campbell. They are looking at bringing DFMO to Australia, he’s said it will likely be available in 4-6 months’ time at the RCH. Will keep you posted if anyone is interested in exploring options in this part of the world.
Just wondering if you have any further update about the availability of DFMO in Australia?
Unfortunately, I am not sure what the hospital has decided. I have talked a couple of months ago with Head of Solid Tumour who advised that the department had a meeting and there was a lot of “mixed feelings” about the DFMO trial. From what I understand they question the efficacy of DFMO as a single agent given at very low doses and its ability to prevent relapse, and have concerns about the validity of the data presented in Dr Scholler’s paper. There is one doctor here who was very excited about the trial, but it appears he received some push back. I know that now they are hoping to bring the MSKCC vaccine here if the Phase 3 international trial opens next year or in due course, but there’s the question of funding. We are talking with the Minister for Health to potentially open the Medical Treatment Overseas Program applications for the trial in the interim, but after the initial promises the communication with the Department of Health has slowed down too! So much red tape, it’s unbelievable.
I’ll let you know when I find out more!
Thanks so much for your reply. We are in Adelaide and I’m currently trying to find out what the oncology team here think about DFMO. The MSKCC vaccine sounds like a promising option. It would be so good if it could be available through the Medical Treatment Overseas Program, although the current eligibility criteria for the program seem very strict. Please let me know if there is anything I can do that might help regarding communication with the Department of Health.
Of course, I’ll keep you in the loop. We’ve submitted the MTOP back in April as we were given assurance by Minister Hunt it would be approved, but the process has been very long and they keep asking for more info which we are still trying to obtain. In the interim, as we had started a fundraiser earlier ”just in case”, we’ve been lucky to raise sufficient funds for the trial, and now we’re under the impression the MTOP would not proceed. My husband and I however, together with Marko’s oncologist, wish to ask for MTOP policy revision for paediatric cancers in general, so will continue to chase the politicians. Please feel free to call me on 0411 348 959 or email on firstname.lastname@example.org if you’d wish to have a chat, happy to share our experience.
Hope you’re little one is doing well and your family is coping. Sending you our very best wishes!
I am reading old messages about dfmo as our daufhter get enrolled august thus year.
we try to figure out what is best regarding the diet and saw your list you attached.
we received a paper from helen devos but want to receive practical info from parents.
could you share your experience with us?
best regards from austria!
How old is your daughter? Ours was on DFMO from 3 to 5, so we found it challenging to follow the suggested diet precisely. We basically set limitations. For instance, Rea loved bananas, corn, and tomatoes. We did not buy those particular items for our home, which prior to DFMO were typically on our grocery list, so as to not tempt her. However, if we were out at a restaurant we might allow a slice of banana cream pie. Or if she wanted pizza or spaghetti, we would allow it but would use less sauce and eat these dinners much less frequently. I think kids are pretty amazing and just adapt. Rea is 7 years old now, doing great and NED, and she still knows to limit particular items. If we have popcorn during a movie she says out loud that she will only have a few pieces then cuts herself off. I hope this provides some insight. Prayers to your daughter and family. We love Dr. Sholler at Helen Devos. Our daughter ewas treated at Johns Hopkins All Children’s in St. Pete, FL, but our doctors worked closely with Dr. Sholler for the trial, and my husband and I have had the pleasure of meeting her a few times and seeing her every year in Tampa at an annual Beat Nb fundraiser. Please don’t hesitate to reach out if there’s anything else I can help with. Take care!
thank you for your quick and Kind answer!
our daughter is 4y2m and was diagnosed when she was 2y8m in April 2018, since then she went thru SIOPEN protocoll and finished last dose of ciscutane june 2019.
she is NED post surgery / prior transplant.
we were pretty surprised how all people behaved at helen devos, all of them were very kind and welcomed us with a shining smile… we plan to have next scans early november, flights and hotel are booked already…
thank you for shared experiences with the diet, we do it same way as it seems the best.
all the best to your daughter and best regards from salzburg!
Could you share the trade name/pharmaceutical company of DFMO? Do you know where parents can buy it if not participated in the trial?
Below are a couple of links to info about DFMO/difluoromethylornithine. Unfortunately, I don’t have direct answers to your questions. Maybe the following will help in your research. If you Google search “DFMO distributors” a couple of websites pop up, but I cannot personally vouch for any of them and I recommend consulting with your child’s doctor first, especially regarding dosage. I truly hope you find all the answers you’re looking for.
It seems oral DFMO has not been commercialised so anyone who wants to take it have to participate in the trial…