› Forums › General Melanoma Community › Treatment center vs. family support
- This topic has 12 replies, 4 voices, and was last updated 8 years, 5 months ago by
maperny.
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- January 5, 2017 at 9:14 pm
Hi all,
I moved on to stage IV (both lungs, right lobe of liver) just before Christmas after beiing NED for 1.5 years (previously IIIA). I'm 36 and an active duty Naval Officer. I've been stationed in DC since just after I was diagnosed in 2015. My treatment center since this all started has been the Murtha Cancer Center at Walter Reed National Military Medical Center. I have been happy with my care there, and they've been able to offer me some unique opportunities treatment-wise (i.e. Ipi at stage 3a as adjuvant therapy, prior to it being approved as such) as well as referrals to other treatment centers for second opinions if I want them, and they are partnered with NCI. I also don't have to deal with any insurance issues, approvals, authorizations, etc. since they are a military treatment center. Literally….zero insurance involvement.
Options on the table treatment-wise were 1) Nivo alone, rescan in 8 weeks to assess progress, possibly adding radiation/embolization/etc to hopefully induce abscopal effect 2) TIL trial at NCI, or 3) other clinical trials. We decided to start on Nivo, and I have had 2 rounds so far with no side effects. My tumor burden is relatively low, all bloodwork is perfect, LDH is 175. I am BRAF positive. My primary doctor is a Hem/Onc who also specializes in immunology and spends most of his time on reasearch. He's only at Walter Reed one day a week to see melanoma patients, but I have his personal contact info and can reach him at any time. He has about 40 years of experience in immunology and oncology.
So, my quandry….my husband and I have absolutely no family here in DC, and our support network here is minimal at best. We are both from Iowa and almost all of our family is there. Things have been rocky over the last few months, partly due to military life and being far from family. I just met with my boss this afternoon, and she offered up the possibility of relocating me back to the midwest if I was interested. Not a done deal by any means, but it's on the table. This means we would be around a ton of family and friends, but I would obviously have to switch treatment centers and potentially deal with Tricare (insurance) since I would be treated at a non-military facility. I have heard almost nothing about Walter Reed's cancer center on the forum or elsewhere, so I am not sure how they rank out in the realm of melanoma treatment facilities. The best options in the midwest that are driveable from possible duty stations would be University of Iowa's Holden Center, the Mayo Clinic in MN, anything in Chicago, and possibly St Louis.
So…any thoughts on treatment centers/specialists in the midwest vs. east coast? Thoughts on the value of proximity to family? I am really emotionally attracted to the idea of relocating back to our home area, both for myself and for my husband, but clearly SURVIVING and quality of care are priority #1. I have no idea what to do. 🙁
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- January 5, 2017 at 11:53 pm
I'm in Iowa and drive up to Rochester, MN (mayo). From what I read Sloan Kettering in NYC and MD Anderson in Texas are tops with mayo being up there. You may want to call the other spots you can transfer to and see if there is a melanoma specialist
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- January 5, 2017 at 11:53 pm
I'm in Iowa and drive up to Rochester, MN (mayo). From what I read Sloan Kettering in NYC and MD Anderson in Texas are tops with mayo being up there. You may want to call the other spots you can transfer to and see if there is a melanoma specialist
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- January 5, 2017 at 11:53 pm
I'm in Iowa and drive up to Rochester, MN (mayo). From what I read Sloan Kettering in NYC and MD Anderson in Texas are tops with mayo being up there. You may want to call the other spots you can transfer to and see if there is a melanoma specialist
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- January 6, 2017 at 3:09 am
I’m from Iowa and I see a melanoma onc at Nebraska Medical Center in Omaha. They are great, what about Eppley? -
- January 6, 2017 at 3:09 am
I’m from Iowa and I see a melanoma onc at Nebraska Medical Center in Omaha. They are great, what about Eppley? -
- January 6, 2017 at 3:09 am
I’m from Iowa and I see a melanoma onc at Nebraska Medical Center in Omaha. They are great, what about Eppley? -
- January 6, 2017 at 4:18 am
Hi There, and sorry you are dealing with this. Here's my 2-cents. As noted in your final sentence, survival is the priority and it sounds like you are receiving excellent, hassle free care. As for family and friends support, be careful what you wish for. In my case my wife has faced a relentless barrage of well-meaning friends and family members who are constantly asking about how I'm doing (stage IV for four years, its been quite a battle). Let me emphasize, these folks are well-meaning, but frankly we would be better off not having to explain things all the time, to people who just don't understand anyway. When I'm going through rough phases she ends up emotionally wrecked and crying. There is no upside to any of it. And then there's all the stories of miracle cures, and email forwards about everything from lemon juice to asparagus that will magically cure my cancer overnight. It gets old, really fast, and can even create conflict when you politely decline. They do not understand the depth of our problem and snake oil salesmen are everywhere. I can't speak for how your circle may respond, but I've found the fewer people that know about my illness the better. You can no doubt get quality care in other places. I live in a geographically isolated area and need to travel thousands of miles and spend thousands each time just to see my specialist but without a doubt, he is the only reason I'm alive today. There will never be anything more important than the quality of care you receive. Best to you in the battle.
Gary
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- January 6, 2017 at 4:18 am
Hi There, and sorry you are dealing with this. Here's my 2-cents. As noted in your final sentence, survival is the priority and it sounds like you are receiving excellent, hassle free care. As for family and friends support, be careful what you wish for. In my case my wife has faced a relentless barrage of well-meaning friends and family members who are constantly asking about how I'm doing (stage IV for four years, its been quite a battle). Let me emphasize, these folks are well-meaning, but frankly we would be better off not having to explain things all the time, to people who just don't understand anyway. When I'm going through rough phases she ends up emotionally wrecked and crying. There is no upside to any of it. And then there's all the stories of miracle cures, and email forwards about everything from lemon juice to asparagus that will magically cure my cancer overnight. It gets old, really fast, and can even create conflict when you politely decline. They do not understand the depth of our problem and snake oil salesmen are everywhere. I can't speak for how your circle may respond, but I've found the fewer people that know about my illness the better. You can no doubt get quality care in other places. I live in a geographically isolated area and need to travel thousands of miles and spend thousands each time just to see my specialist but without a doubt, he is the only reason I'm alive today. There will never be anything more important than the quality of care you receive. Best to you in the battle.
Gary
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- January 6, 2017 at 4:18 am
Hi There, and sorry you are dealing with this. Here's my 2-cents. As noted in your final sentence, survival is the priority and it sounds like you are receiving excellent, hassle free care. As for family and friends support, be careful what you wish for. In my case my wife has faced a relentless barrage of well-meaning friends and family members who are constantly asking about how I'm doing (stage IV for four years, its been quite a battle). Let me emphasize, these folks are well-meaning, but frankly we would be better off not having to explain things all the time, to people who just don't understand anyway. When I'm going through rough phases she ends up emotionally wrecked and crying. There is no upside to any of it. And then there's all the stories of miracle cures, and email forwards about everything from lemon juice to asparagus that will magically cure my cancer overnight. It gets old, really fast, and can even create conflict when you politely decline. They do not understand the depth of our problem and snake oil salesmen are everywhere. I can't speak for how your circle may respond, but I've found the fewer people that know about my illness the better. You can no doubt get quality care in other places. I live in a geographically isolated area and need to travel thousands of miles and spend thousands each time just to see my specialist but without a doubt, he is the only reason I'm alive today. There will never be anything more important than the quality of care you receive. Best to you in the battle.
Gary
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- January 6, 2017 at 11:52 am
I wouldn't underestimate the nightmare it is dealing with insurance and it is getting worse. It creates extra stress when there is already enough with the cancer to deal with. Sounds like from the healthcare front you have an excellent set-up now. With techonology today we feel the support of family although we are in the US and all our family are in Spain and the U.K.
Goid luck with your decision.
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- January 6, 2017 at 11:52 am
I wouldn't underestimate the nightmare it is dealing with insurance and it is getting worse. It creates extra stress when there is already enough with the cancer to deal with. Sounds like from the healthcare front you have an excellent set-up now. With techonology today we feel the support of family although we are in the US and all our family are in Spain and the U.K.
Goid luck with your decision.
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- January 6, 2017 at 11:52 am
I wouldn't underestimate the nightmare it is dealing with insurance and it is getting worse. It creates extra stress when there is already enough with the cancer to deal with. Sounds like from the healthcare front you have an excellent set-up now. With techonology today we feel the support of family although we are in the US and all our family are in Spain and the U.K.
Goid luck with your decision.
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