Page 2 of 2

Re: Treatment at MSK

Posted: Wed Sep 11, 2019 2:37 am
by brokenwings
FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.

Re: Treatment at MSK

Posted: Wed Sep 11, 2019 3:49 am
by Rock_Robster
brokenwings wrote:FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.

That’s super interesting brokenwings, thanks for sharing.
My understanding (potentially incorrectly) is that FUDR is not approved in the EU; and from a few recent papers it looks like Gustave Roussy might be using oxaliplatin-based HAI? No idea how the safety/effectiveness compares between the two.

Re: Treatment at MSK

Posted: Wed Sep 11, 2019 7:37 am
by NHMike
Rock_Robster wrote:
brokenwings wrote:FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.

That’s super interesting brokenwings, thanks for sharing.
My understanding (potentially incorrectly) is that FUDR is not approved in the EU; and from a few recent papers it looks like Gustave Roussy might be using oxaliplatin-based HAI? No idea how the safety/effectiveness compares between the two.


I could not imagine Oxaliplatin-based HAI.

Re: Treatment at MSK

Posted: Wed Sep 11, 2019 8:06 am
by Rock_Robster
NHMike wrote:
Rock_Robster wrote:
brokenwings wrote:FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.

That’s super interesting brokenwings, thanks for sharing.
My understanding (potentially incorrectly) is that FUDR is not approved in the EU; and from a few recent papers it looks like Gustave Roussy might be using oxaliplatin-based HAI? No idea how the safety/effectiveness compares between the two.


I could not imagine Oxaliplatin-based HAI.

It sounded rough to me too, but here it is... https://www.ncbi.nlm.nih.gov/m/pubmed/30081865/

Re: Treatment at MSK

Posted: Wed Sep 11, 2019 8:35 am
by brokenwings
Rock_Robster wrote:
brokenwings wrote:FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.

That’s super interesting brokenwings, thanks for sharing.
My understanding (potentially incorrectly) is that FUDR is not approved in the EU; and from a few recent papers it looks like Gustave Roussy might be using oxaliplatin-based HAI? No idea how the safety/effectiveness compares between the two.



I have no idea either...

Re: Treatment at MSK

Posted: Thu Sep 12, 2019 4:43 am
by AlexandraZ
brokenwings wrote:FWIW, HAI pump is available in France.
Here's a link to the international patients section in Gustave Roussy Insitute:

https://www.gustaveroussy.fr/en/international-patients.

That’s super interesting brokenwings, thanks for sharing.
My understanding (potentially incorrectly) is that FUDR is not approved in the EU; and from a few recent papers it looks like Gustave Roussy might be using oxaliplatin-based HAI? No idea how the safety/effectiveness compares between the two.[/quote]



Thanks for the data, both of you! We don't have any experience with oxaliplatin, but it sounds pretty rough whereas FUDR seems to have few side effects with the HAI pump. I think we'll start at MSK and see what they say. We are by no means rich, but we are young and we have the rest of our lives to pay back debts. The most important thing is obviously to do whatever it takes to make the rest of his life long!

Re: Treatment at MSK

Posted: Thu Sep 12, 2019 3:28 pm
by MeAndMine
We are by no means rich, but we are young and we have the rest of our lives to pay back debts. The most important thing is obviously to do whatever it takes to make the rest of his life long!

That is the best attitude Alexandra, and you are so right! It's hard to decide what to do and how to do it but you are on top of it and doing the research to land you all in the right place.

Re: Treatment at MSK

Posted: Tue Sep 17, 2019 3:55 pm
by zephyr
AlexandraZ wrote:Yikes, that's a lot of money. But that's the kind of ballpark figure I was expecting. I guess we're lucky it's all free here in Denmark.

As I think someone else mentioned, ask about a cash pay price. Even U.S. citizens who have insurance but with high deductibles sometimes pay cash out of pocket upfront because the cost is less as a cash pay than the deductible they will pay if it goes through insurance. It is sometimes a significant savings.

Re: Treatment at MSK

Posted: Wed Sep 18, 2019 1:17 am
by ginabeewell
AlexandraZ wrote:
Thanks for the data, both of you! We don't have any experience with oxaliplatin, but it sounds pretty rough whereas FUDR seems to have few side effects with the HAI pump. I think we'll start at MSK and see what they say. We are by no means rich, but we are young and we have the rest of our lives to pay back debts. The most important thing is obviously to do whatever it takes to make the rest of his life long!


If I were paying out of pocket, I might do a consult at MSK and then check out this pump trial at NIH:

https://clinicaltrials.gov/ct2/show/NCT03366155

Believe if you opted to go for the trial and qualified, treatment would be covered and I had heard secondhand travel too. You could even ask MSK what they thinknof you participating.

Re: Treatment at MSK

Posted: Wed Sep 18, 2019 12:57 pm
by AlexandraZ
zephyr wrote:
AlexandraZ wrote:Yikes, that's a lot of money. But that's the kind of ballpark figure I was expecting. I guess we're lucky it's all free here in Denmark.

As I think someone else mentioned, ask about a cash pay price. Even U.S. citizens who have insurance but with high deductibles sometimes pay cash out of pocket upfront because the cost is less as a cash pay than the deductible they will pay if it goes through insurance. It is sometimes a significant savings.


Oh thanks, good to know! We'll definitely ask for that then. We have a lot of people who are REALLY rooting for Jesper, and I think we can work it out somehow to get a lump sum, especially if it is cheaper that way.

We're waiting for all the documents from the hospital now...hopefully it goes quickly! They said they would send the CT scans with regular mail, so I hope it goes relatively quickly.

Re: Treatment at MSK

Posted: Wed Sep 18, 2019 1:04 pm
by zephyr
AlexandraZ wrote:
zephyr wrote:
AlexandraZ wrote:Yikes, that's a lot of money. But that's the kind of ballpark figure I was expecting. I guess we're lucky it's all free here in Denmark.

As I think someone else mentioned, ask about a cash pay price. Even U.S. citizens who have insurance but with high deductibles sometimes pay cash out of pocket upfront because the cost is less as a cash pay than the deductible they will pay if it goes through insurance. It is sometimes a significant savings.


Oh thanks, good to know! We'll definitely ask for that then. We have a lot of people who are REALLY rooting for Jesper, and I think we can work it out somehow to get a lump sum, especially if it is cheaper that way.

We're waiting for all the documents from the hospital now...hopefully it goes quickly! They said they would send the CT scans with regular mail, so I hope it goes relatively quickly.


We had a friend on your side of the pond who needed to travel to Thailand for treatment. He used chuffed.org (crowd funding) to raise the money.