› Forums › General Melanoma Community › HOW DO YOU ALL TRAVEL SO FAR FOR TREATMENT???
- This topic has 30 replies, 8 voices, and was last updated 9 years, 3 months ago by
pookerpb.
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- September 18, 2015 at 7:33 pm
I see so many of you go great distances in hopes of being part of new trial, or seeing a specific Melanoma Specialist. My husband was just kicked out of his most recent trial, and although he can continue to have his Keytruda portion of it fairlyl close to us, I would like to look at other options since its obvious it is not working fast enough to keep his stage IV stable.
We have been traviling back and forth about 3 hrs for the last few years which seems like so far initially. After hundreds of trips it does get shorter as it seems. I know that there were several individuals who flew in to where we going from Chicago, NY, all over. With two young teens at home, the 3 hour drive for us one way, was exhausting enough and come home and do the day to day stuff that needs done.
I am curious how some of you travel and afford to travel to different places for consults and such? Once you are established in your trial, do you fly there for each and every treatment, scan etc?
I guess I am not willing to accept that continuing Keytruda when it isnt working for my husband. But I dont know how to proceed. I know my husband does not want to take the time away from family, traveling all over and God knows we dont have the money.
Can anyone give me any suggestions on maybe a way to make it feasible to do, or how you do it? Especially for those still working?
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- September 18, 2015 at 9:48 pm
In the situation i had my insurance will cover up to 10k for travel expenses for a clinical trial but it has to be at a center of excellence. I have united health care. We also talked about some kind of benefit if we had that as the only option. I really wasn’t comfortable doing a benifit until that was a last resort financially. I think if it comes down to it and a trial is what needs to happen a person needs to borrow scrape or whatever to make it happen. -
- September 18, 2015 at 9:48 pm
In the situation i had my insurance will cover up to 10k for travel expenses for a clinical trial but it has to be at a center of excellence. I have united health care. We also talked about some kind of benefit if we had that as the only option. I really wasn’t comfortable doing a benifit until that was a last resort financially. I think if it comes down to it and a trial is what needs to happen a person needs to borrow scrape or whatever to make it happen.-
- September 18, 2015 at 9:57 pm
As far as working i had planned on working mon-thurs flying out on thurs, and was hoping to get hospital to let me get infusions on Friday, only missing one day of work. The 10k from insurance would only go so far so i needed to work 4 days a week to pay for other expenses when insurance money was used up. My biggest fear was navigating from airport home by myself as we couldn’t afford for my wife to make every trip. -
- September 18, 2015 at 9:57 pm
As far as working i had planned on working mon-thurs flying out on thurs, and was hoping to get hospital to let me get infusions on Friday, only missing one day of work. The 10k from insurance would only go so far so i needed to work 4 days a week to pay for other expenses when insurance money was used up. My biggest fear was navigating from airport home by myself as we couldn’t afford for my wife to make every trip. -
- September 18, 2015 at 9:57 pm
As far as working i had planned on working mon-thurs flying out on thurs, and was hoping to get hospital to let me get infusions on Friday, only missing one day of work. The 10k from insurance would only go so far so i needed to work 4 days a week to pay for other expenses when insurance money was used up. My biggest fear was navigating from airport home by myself as we couldn’t afford for my wife to make every trip.
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- September 18, 2015 at 9:48 pm
In the situation i had my insurance will cover up to 10k for travel expenses for a clinical trial but it has to be at a center of excellence. I have united health care. We also talked about some kind of benefit if we had that as the only option. I really wasn’t comfortable doing a benifit until that was a last resort financially. I think if it comes down to it and a trial is what needs to happen a person needs to borrow scrape or whatever to make it happen. -
- September 19, 2015 at 12:07 am
Our local chapter of the ACS will pay for one round trip flight interisland and will provide a voucher for a taxi. Queen's PET/CT center will also provide a cab both ways when coming in for scans. It is the only PET/CT machine in our state and all the outer island folks have to fly.
Insurance will only cover $100 per trip. It costs on average $300 round trip interisland. Yes, that is correct, you can fly round trip from the mainland to Hawaii and back for just over what it costs us interisland. We call it the paradise tax. Same thing for if you start in Hawaii, go to the mainland, and return. That flight is at minimum $800.
Corporate Angles is another network that helps to fly patients around using unused space on corporate planes. Local flying clubs may do the same since the pilots need to keep up their flight hours. You may only have to chip in a bit for fuel if anything. Most major hospitals have shuttles.
Then again there is Craig's list but then you need to carefully screen the ads. ACS chapters may also have volunteers to help drive, or the hospital can work with volunteer groups.
Hope that helps some.
I did finally get dismissed by my medical oncologist on Oahu, but only if I still see the surgical one yearly. At least the surgical onc. flies to the Big Island 3-4x per year. It took $$$ and time away from work. Fortunately I am still NED 5 years + after a stage IV diagnosis. I had a 2 y/o and 4 y/o at the time, single parent. Any way your teens can step up their commitment to houshold responsibilites to help you out? It won' be long until they are on their own, just thinking out loud and have no idea what your family schedule / dynamic is.
KK
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- September 19, 2015 at 12:07 am
Our local chapter of the ACS will pay for one round trip flight interisland and will provide a voucher for a taxi. Queen's PET/CT center will also provide a cab both ways when coming in for scans. It is the only PET/CT machine in our state and all the outer island folks have to fly.
Insurance will only cover $100 per trip. It costs on average $300 round trip interisland. Yes, that is correct, you can fly round trip from the mainland to Hawaii and back for just over what it costs us interisland. We call it the paradise tax. Same thing for if you start in Hawaii, go to the mainland, and return. That flight is at minimum $800.
Corporate Angles is another network that helps to fly patients around using unused space on corporate planes. Local flying clubs may do the same since the pilots need to keep up their flight hours. You may only have to chip in a bit for fuel if anything. Most major hospitals have shuttles.
Then again there is Craig's list but then you need to carefully screen the ads. ACS chapters may also have volunteers to help drive, or the hospital can work with volunteer groups.
Hope that helps some.
I did finally get dismissed by my medical oncologist on Oahu, but only if I still see the surgical one yearly. At least the surgical onc. flies to the Big Island 3-4x per year. It took $$$ and time away from work. Fortunately I am still NED 5 years + after a stage IV diagnosis. I had a 2 y/o and 4 y/o at the time, single parent. Any way your teens can step up their commitment to houshold responsibilites to help you out? It won' be long until they are on their own, just thinking out loud and have no idea what your family schedule / dynamic is.
KK
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- September 19, 2015 at 12:07 am
Our local chapter of the ACS will pay for one round trip flight interisland and will provide a voucher for a taxi. Queen's PET/CT center will also provide a cab both ways when coming in for scans. It is the only PET/CT machine in our state and all the outer island folks have to fly.
Insurance will only cover $100 per trip. It costs on average $300 round trip interisland. Yes, that is correct, you can fly round trip from the mainland to Hawaii and back for just over what it costs us interisland. We call it the paradise tax. Same thing for if you start in Hawaii, go to the mainland, and return. That flight is at minimum $800.
Corporate Angles is another network that helps to fly patients around using unused space on corporate planes. Local flying clubs may do the same since the pilots need to keep up their flight hours. You may only have to chip in a bit for fuel if anything. Most major hospitals have shuttles.
Then again there is Craig's list but then you need to carefully screen the ads. ACS chapters may also have volunteers to help drive, or the hospital can work with volunteer groups.
Hope that helps some.
I did finally get dismissed by my medical oncologist on Oahu, but only if I still see the surgical one yearly. At least the surgical onc. flies to the Big Island 3-4x per year. It took $$$ and time away from work. Fortunately I am still NED 5 years + after a stage IV diagnosis. I had a 2 y/o and 4 y/o at the time, single parent. Any way your teens can step up their commitment to houshold responsibilites to help you out? It won' be long until they are on their own, just thinking out loud and have no idea what your family schedule / dynamic is.
KK
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- September 19, 2015 at 2:55 am
Some trials will reimburse for mileage and hotels. Probably doubtful they would reimburse for airline tickets though. My initial trial paperwork had a cap on reimbursements for something like $500. I went through that in about 3 visits. My clincal trial coordinator suggested we continue to submit for reimbursements and BMS continued to pay them. I've been reimbursed thousands over the 2 years I've been on the trial.
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- September 19, 2015 at 2:55 am
Some trials will reimburse for mileage and hotels. Probably doubtful they would reimburse for airline tickets though. My initial trial paperwork had a cap on reimbursements for something like $500. I went through that in about 3 visits. My clincal trial coordinator suggested we continue to submit for reimbursements and BMS continued to pay them. I've been reimbursed thousands over the 2 years I've been on the trial.
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- September 19, 2015 at 2:55 am
Some trials will reimburse for mileage and hotels. Probably doubtful they would reimburse for airline tickets though. My initial trial paperwork had a cap on reimbursements for something like $500. I went through that in about 3 visits. My clincal trial coordinator suggested we continue to submit for reimbursements and BMS continued to pay them. I've been reimbursed thousands over the 2 years I've been on the trial.
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- September 19, 2015 at 4:59 am
Where I live I'm lucky. There's several melanoma specialists in town (SF). It seems like there are a decent variety of trials close by (when flying). LA is 450 miles south, Portland is 550 miles north. Seattle and San Diego not that much further.
The trial I'm on is a short plane ride away, 550 miles, biweekly trips to Portland. I do it as a day trip now. If I needed to fly further, it might start to be a burdern. I leave the house at 6:45a, catch a 9am flight, am at the hospital by 11:30a. My infusion appoitnment is 12:40p. I catch a 6:30p or 7p flght back, and usually get home around 10. The Nivo/etc. treatments have not been hard for me to take at all. Doing these trips solo saves money for sure too.
For the first few cycles I needed to make an extra trip to Portland each cycle for the scan. Now they let me get the scan in SF where I live, and FedEx the CD up before my next appointment.
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- September 19, 2015 at 4:59 am
Where I live I'm lucky. There's several melanoma specialists in town (SF). It seems like there are a decent variety of trials close by (when flying). LA is 450 miles south, Portland is 550 miles north. Seattle and San Diego not that much further.
The trial I'm on is a short plane ride away, 550 miles, biweekly trips to Portland. I do it as a day trip now. If I needed to fly further, it might start to be a burdern. I leave the house at 6:45a, catch a 9am flight, am at the hospital by 11:30a. My infusion appoitnment is 12:40p. I catch a 6:30p or 7p flght back, and usually get home around 10. The Nivo/etc. treatments have not been hard for me to take at all. Doing these trips solo saves money for sure too.
For the first few cycles I needed to make an extra trip to Portland each cycle for the scan. Now they let me get the scan in SF where I live, and FedEx the CD up before my next appointment.
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- September 19, 2015 at 7:04 pm
Funds available here: http://www.melanomainternational.org/web-resources/patient-access-grants-apply
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- September 19, 2015 at 7:04 pm
Funds available here: http://www.melanomainternational.org/web-resources/patient-access-grants-apply
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- September 19, 2015 at 7:04 pm
Funds available here: http://www.melanomainternational.org/web-resources/patient-access-grants-apply
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- September 19, 2015 at 4:59 am
Where I live I'm lucky. There's several melanoma specialists in town (SF). It seems like there are a decent variety of trials close by (when flying). LA is 450 miles south, Portland is 550 miles north. Seattle and San Diego not that much further.
The trial I'm on is a short plane ride away, 550 miles, biweekly trips to Portland. I do it as a day trip now. If I needed to fly further, it might start to be a burdern. I leave the house at 6:45a, catch a 9am flight, am at the hospital by 11:30a. My infusion appoitnment is 12:40p. I catch a 6:30p or 7p flght back, and usually get home around 10. The Nivo/etc. treatments have not been hard for me to take at all. Doing these trips solo saves money for sure too.
For the first few cycles I needed to make an extra trip to Portland each cycle for the scan. Now they let me get the scan in SF where I live, and FedEx the CD up before my next appointment.
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- September 19, 2015 at 6:54 pm
Like Kim K, I also live in Hawaii but am already on the main island of Oahu where she travels to get treatment at Queens Hospital. BTW, Queens has just joined MD Anderson and claims they will begin offering the same level of treatment and access to trials. We will see how that goes. But to your point, when it became clear that "standard of care" was not going to be enough for my Stage IV, and I progressed on the final insurance covered option of Keytruda, the only thing left was trials. I began traveling regularly to San Francisco to see a mel specialist, who operates with a much larger toolbox. The traveling has been brutal and you cannot find a more expensive place to stay than San Fran. $800 round trip airfares, and to find a hotel above fleabag status for less than $200 per/day requires a lot of research. I think one of the hardest things with these extraordinary costs is that any trial I participate in must be actual treatment, as going through all this in a double-blind and possibly receiving only the placebo is just too risky (not that I have many options). Long story short, is there is help out there. After spending thousands out of pocket, I am in a trial with a partial reimbursement, and more importantly the best advice I can give is to check with the clinic social worker at the treatment facility. I was able to hook up with a charity (sorry obliged to not name it publicly) who offers reimbursements exclusively to those participating in clinical trials. So you need to ask, and while in my case it can never actually cover the costs fully, I bet in most cases they could really help a lot.
Aloha, Gary
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- September 19, 2015 at 6:54 pm
Like Kim K, I also live in Hawaii but am already on the main island of Oahu where she travels to get treatment at Queens Hospital. BTW, Queens has just joined MD Anderson and claims they will begin offering the same level of treatment and access to trials. We will see how that goes. But to your point, when it became clear that "standard of care" was not going to be enough for my Stage IV, and I progressed on the final insurance covered option of Keytruda, the only thing left was trials. I began traveling regularly to San Francisco to see a mel specialist, who operates with a much larger toolbox. The traveling has been brutal and you cannot find a more expensive place to stay than San Fran. $800 round trip airfares, and to find a hotel above fleabag status for less than $200 per/day requires a lot of research. I think one of the hardest things with these extraordinary costs is that any trial I participate in must be actual treatment, as going through all this in a double-blind and possibly receiving only the placebo is just too risky (not that I have many options). Long story short, is there is help out there. After spending thousands out of pocket, I am in a trial with a partial reimbursement, and more importantly the best advice I can give is to check with the clinic social worker at the treatment facility. I was able to hook up with a charity (sorry obliged to not name it publicly) who offers reimbursements exclusively to those participating in clinical trials. So you need to ask, and while in my case it can never actually cover the costs fully, I bet in most cases they could really help a lot.
Aloha, Gary
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- September 19, 2015 at 6:54 pm
Like Kim K, I also live in Hawaii but am already on the main island of Oahu where she travels to get treatment at Queens Hospital. BTW, Queens has just joined MD Anderson and claims they will begin offering the same level of treatment and access to trials. We will see how that goes. But to your point, when it became clear that "standard of care" was not going to be enough for my Stage IV, and I progressed on the final insurance covered option of Keytruda, the only thing left was trials. I began traveling regularly to San Francisco to see a mel specialist, who operates with a much larger toolbox. The traveling has been brutal and you cannot find a more expensive place to stay than San Fran. $800 round trip airfares, and to find a hotel above fleabag status for less than $200 per/day requires a lot of research. I think one of the hardest things with these extraordinary costs is that any trial I participate in must be actual treatment, as going through all this in a double-blind and possibly receiving only the placebo is just too risky (not that I have many options). Long story short, is there is help out there. After spending thousands out of pocket, I am in a trial with a partial reimbursement, and more importantly the best advice I can give is to check with the clinic social worker at the treatment facility. I was able to hook up with a charity (sorry obliged to not name it publicly) who offers reimbursements exclusively to those participating in clinical trials. So you need to ask, and while in my case it can never actually cover the costs fully, I bet in most cases they could really help a lot.
Aloha, Gary
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- September 21, 2015 at 2:18 pm
I used to pinch every penny. Even when I was making really good money I would splurge by ordering off the dollar menu. So for years half or more of my income went to savings. Also I never married or had kids. In hind sight I should have lived it up more. But I was fairly happy.
Anyway that's how I'm affording such things. I figure I only got months anyway unless they fix me so enjoy it now finally. Plus I still get 2/3 my old income until they fix me which I hope and pray they do.
There are angel flights.com that gives free flights from Midwest to mda. I haven't checked into it though.
Also some churches in Houston provide an apartment for 60 a day. Thsts less than half the cost I'm at now. But there's a bit of a wait list.
I really like this Houston apartment. Just got here last night but way better than that noisy hotel. Only thing I heard last night was the ac and my fan so I slept great.
Artie
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- September 21, 2015 at 2:18 pm
I used to pinch every penny. Even when I was making really good money I would splurge by ordering off the dollar menu. So for years half or more of my income went to savings. Also I never married or had kids. In hind sight I should have lived it up more. But I was fairly happy.
Anyway that's how I'm affording such things. I figure I only got months anyway unless they fix me so enjoy it now finally. Plus I still get 2/3 my old income until they fix me which I hope and pray they do.
There are angel flights.com that gives free flights from Midwest to mda. I haven't checked into it though.
Also some churches in Houston provide an apartment for 60 a day. Thsts less than half the cost I'm at now. But there's a bit of a wait list.
I really like this Houston apartment. Just got here last night but way better than that noisy hotel. Only thing I heard last night was the ac and my fan so I slept great.
Artie
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- September 21, 2015 at 2:45 pm
Thank you all so much for the information. I am definately going to be asking more qeustions and getting in touch with other melanoma centers. We have no problem making a day out of treatment. Just driving to Pittsburgh, the long wait for the pharmacy to mix up meds after doc finally approves labs, and the treatment is a long day. We leve by 6am and return home about 7pm.
I know anytihng is doable. We just need to get in on this and find another trial for him.
We both agree that our teens are old enough to step up and help more at home….its just so hard. We try to keep their lives as much the "norm" as we can. I am a believer that they have their whole lives for housework and such and their main job right now is to play hard (they are very talented athletes) and continue doing well in school. Maybe just talking to them about helping with "little things" would make them even feel like they are doing what they can for dad too!.
For now, I have so many calls to make and informationto gather. I dont know what kinds of trials are out there if you have failed Keytruda/Interpheron combo trial.
Thanks fo much everyone!!
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- September 21, 2015 at 2:45 pm
Thank you all so much for the information. I am definately going to be asking more qeustions and getting in touch with other melanoma centers. We have no problem making a day out of treatment. Just driving to Pittsburgh, the long wait for the pharmacy to mix up meds after doc finally approves labs, and the treatment is a long day. We leve by 6am and return home about 7pm.
I know anytihng is doable. We just need to get in on this and find another trial for him.
We both agree that our teens are old enough to step up and help more at home….its just so hard. We try to keep their lives as much the "norm" as we can. I am a believer that they have their whole lives for housework and such and their main job right now is to play hard (they are very talented athletes) and continue doing well in school. Maybe just talking to them about helping with "little things" would make them even feel like they are doing what they can for dad too!.
For now, I have so many calls to make and informationto gather. I dont know what kinds of trials are out there if you have failed Keytruda/Interpheron combo trial.
Thanks fo much everyone!!
-
- September 21, 2015 at 2:45 pm
Thank you all so much for the information. I am definately going to be asking more qeustions and getting in touch with other melanoma centers. We have no problem making a day out of treatment. Just driving to Pittsburgh, the long wait for the pharmacy to mix up meds after doc finally approves labs, and the treatment is a long day. We leve by 6am and return home about 7pm.
I know anytihng is doable. We just need to get in on this and find another trial for him.
We both agree that our teens are old enough to step up and help more at home….its just so hard. We try to keep their lives as much the "norm" as we can. I am a believer that they have their whole lives for housework and such and their main job right now is to play hard (they are very talented athletes) and continue doing well in school. Maybe just talking to them about helping with "little things" would make them even feel like they are doing what they can for dad too!.
For now, I have so many calls to make and informationto gather. I dont know what kinds of trials are out there if you have failed Keytruda/Interpheron combo trial.
Thanks fo much everyone!!
-
- September 21, 2015 at 2:18 pm
I used to pinch every penny. Even when I was making really good money I would splurge by ordering off the dollar menu. So for years half or more of my income went to savings. Also I never married or had kids. In hind sight I should have lived it up more. But I was fairly happy.
Anyway that's how I'm affording such things. I figure I only got months anyway unless they fix me so enjoy it now finally. Plus I still get 2/3 my old income until they fix me which I hope and pray they do.
There are angel flights.com that gives free flights from Midwest to mda. I haven't checked into it though.
Also some churches in Houston provide an apartment for 60 a day. Thsts less than half the cost I'm at now. But there's a bit of a wait list.
I really like this Houston apartment. Just got here last night but way better than that noisy hotel. Only thing I heard last night was the ac and my fan so I slept great.
Artie
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