AlexandraZ wrote:Hi everyone,
I would love to know more about anyone's experiences at MSK and specifically with Dr Kemeny! Those of you who have/had her as your doctor, how did you manage that? Was it difficult to become her patient?
How long did you have to wait for your first appointment? How long do you think we'll need to stay in NYC for the second opinion?
The other thing is, in Denmark all health care is free, as we live in a welfare state. So we have no extra medical insurance, which means we would pay for everything out of our pockets. ANY idea of how much it would be for an HAI pump/liver resection if we get so lucky? I know it is probably a massive amount of money, but I'd love to know what kind of amount we are talking about. If they think they can help Jesper we'll work out the money somehow.
Any information is much appreciated! I don't know much about the whole system in the US, so any stories/data/info about MSK and Dr Kemeny
kandj wrote:
Everyone we have met at MSKCC has been helpful and kind. From the Janitors to the Department Heads! You will be going to a lot of appointments and meeting a lot of people in those two days for scans and Drs. appointments. Keep something with you to take notes in. Dr. K's team is very efficient. This appointment is the one where you will spend the most time with Dr. K and even then it isn't a lot. While it will seem brief (and it is!) the behind the scene events are not. They have weekly meetings with all the doctors and surgeons and talk about the cases. They discuss strategies and what the best way to tackle your cancer is. If your partner hasn't had Avastin or another drug they need to be off for a certain amount of weeks, or chemo recently they will probably schedule surgery within the following 2-4 weeks.
Lastly, please get in touch with the MSKCC social work team. The income guidelines are fairly high for help with payments. I believe it is something like 500% above the poverty line. Which is like $80k for a 2 person household. They have a large endowment and are able to help people out. Also, to save on cabs, we like to stay down by the main hospital and then take the shuttle bus from there to her office in midtown. It is, however, only about a 20-25 min walk from the main hospital to her office. We usually walk it if the weather is nice and the appointments aren't too early
Rock_Robster wrote:It’s a great question Alexandra, as another non-US’er I’ve been wondering that myself too. I’ve worked on the assumption - with very little basis - of at least $100k all-in for the HAI treatment, maybe more like $200k with surgeries. I found one site that quoted typical liver surgery cost in the range of $40-60k without complications or the MSK factor. I could be easily out by a huge margin though particularly given the insurance vs self-pay angle, and I’d be fascinated to see how close my guess was. In any case I’m sure their international centre can give you better estimates than this!
The other question I’ve been trying to work out is around logistics. Hopefully someone can correct me here, but I understand the initial course of HAI treatment runs for 6 months, and then the pump is left in for 2 years? So this would mean living in the vicinity of NYC for somewhere between 6-24 months; or living somewhere cheaper and regularly commuting to NY. I can see this potentially rivalling the costs of treatment, especially if you decide to stay close to MSK and maintain a home in Denmark.
MetastaticEquilibria wrote:Rock_Robster wrote:The other question I’ve been trying to work out is around logistics. Hopefully someone can correct me here, but I understand the initial course of HAI treatment runs for 6 months, and then the pump is left in for 2 years? So this would mean living in the vicinity of NYC for somewhere between 6-24 months; or living somewhere cheaper and regularly commuting to NY. I can see this potentially rivalling the costs of treatment, especially if you decide to stay close to MSK and maintain a home in Denmark.
That is a big issue. They say they will work with your local hospital, so if your local hospital is willing and able to do the FUDR refills, that could help a lot with logistics and cost.
Rock_Robster wrote:It’s a great question Alexandra, as another non-US’er I’ve been wondering that myself too. I’ve worked on the assumption - with very little basis - of at least $100k all-in for the HAI treatment, maybe more like $200k with surgeries. I found one site that quoted typical liver surgery cost in the range of $40-60k without complications or the MSK factor. I could be easily out by a huge margin though particularly given the insurance vs self-pay angle, and I’d be fascinated to see how close my guess was. In any case I’m sure their international centre can give you better estimates than this!
The other question I’ve been trying to work out is around logistics. Hopefully someone can correct me here, but I understand the initial course of HAI treatment runs for 6 months, and then the pump is left in for 2 years? So this would mean living in the vicinity of NYC for somewhere between 6-24 months; or living somewhere cheaper and regularly commuting to NY. I can see this potentially rivalling the costs of treatment, especially if you decide to stay close to MSK and maintain a home in Denmark.
One other thing to perhaps consider - there is a trial of the HAI pump at Erasmus MC in Rotterdam. It’s using the same drug I believe (FUDR) but a German-made pump rather than the Medtronic. I understand they have been liaising with MSK in setting up the trial. I don’t know what availability is like but it could be a helluva lot easier from Denmark... http://www.chemopomp.nl
Best of luck!
Rob
MetastaticEquilibria wrote:It might be a good idea to look into eligibility for the Rotterdam trial while waiting to see MSK, so you have full information on whether that fall-back option exists or not. You may need to make a decision in a hurry by the time you see MSK.
AlexandraZ wrote:MetastaticEquilibria wrote:It might be a good idea to look into eligibility for the Rotterdam trial while waiting to see MSK, so you have full information on whether that fall-back option exists or not. You may need to make a decision in a hurry by the time you see MSK.
Good point. I'll look into it. Thanks!
Rock_Robster wrote:
The other question I’ve been trying to work out is around logistics. Hopefully someone can correct me here, but I understand the initial course of HAI treatment runs for 6 months, and then the pump is left in for 2 years? So this would mean living in the vicinity of NYC for somewhere between 6-24 months; or living somewhere cheaper and regularly commuting to NY. I can see this potentially rivalling the costs of treatment, especially if you decide to stay close to MSK and maintain a home in Denmark.
kandj wrote:
We called MSK after our second opinion at MD Anderson ended in a big fat no. Gathering the paperwork was a bit of a hassle. I had to hound a few offices to send the info over. After that got sent over, they reviewed it and said she would see DH.
...
boswind wrote:kandj wrote:
We called MSK after our second opinion at MD Anderson ended in a big fat no. Gathering the paperwork was a bit of a hassle. I had to hound a few offices to send the info over. After that got sent over, they reviewed it and said she would see DH.
...
Hi kandj,
Could you clarify " ... after our second opinion at MD Anderson ended in a big fat no."? Do you mean that MD Anderson did not accept you for seeking the 2nd opinion?
Thanks,
[/quote]AlexandraZ wrote:
Amazing that they were able to remove so many mets from your husband's liver!! It sounds like their surgeons are extremely competent. Fingers crossed over here!!!
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