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cayandray
@cayandray

Posts: 7
Joined: Sep 03, 2017

Proton Therapy travel and recommendation

Posted by @cayandray, Sep 3, 2017

Is this really the best? How do you handle travel for 45 treatments? Mayo is in Minnesota, about 5 hours from us in Wisconsin.

REPLY

Jacksonville has an on-campus facility for people who are awaiting transplants, post transplant, chemo and other immuno-compromised conditions. The name of it is Gabriel House. We stayed there for my husband’s kidney transplant. It is a beautiful facility. You might inquire if Minnesota has a place like that. In 2012, it was $35/night.

The communal nature of the Gabriel House was not my cup of tea as a caregiver. Food is forbidden in the rooms, as well as tv and radio. The object of this is to force you to interact with other residents.

We live 6 hours away from Mayo Jacksonville. In summer of 2015, my husband was diagnosed with Squamous Cell Carcinoma (spindle) on his head. The immune-suppressants he was given for his kidney transplant allowed the cancer to flourish. He has undergone 30 treatments two different times at Mayo (Fall 2015 & Spring 2016). Each time the cancer would pop up somewhere else on his head, but never where it had been irradiated.

Both times my husband went on short term disability, we relocated to Jacksonville, and we rented an apartment. It was very stressful in that we not only had to deal with the illness, we were all alone. If my mother had not been able to stay at our house and take care of our two dogs it would have been even more stressful. It was also expensive.

Before the first treatment I told the radiation oncologist at Mayo that Baptist Medical Center in Pensacola (40 miles away from us) had the same equipment. His response was, “Yes, but do they know how to use it?” At that time, we were looking for a cure and would have gone to any lengths to get it. If we could have it done locally, how would we know that the outcome would be the same? All we knew was that Mayo was the best option we had before us.

In January 2017, my husband began his third round (30) of radiation – at a local oncology center. This time it was palliative.

Both Hematology and Radiation Oncology at Mayo worked with our local doctors to plan the treatment. The goal was to get rid of two painful tumors in his neck and that was accomplished. The terminal prognosis probably played into Mayo’s willingness to work with outside doctors. The difference in the treatment between locally and Mayo was certainly apparent. It was like getting from point A to point B – you can get there in a BMW or a Ford.

I can only recommend that you explore ALL options available.

@cayandray– Hello and Welcome to Mayo Clinic Connect!

If you are referred for Proton therapy I believe they can make a referral for you to local lodging. One place would be the hope lodge in Rochester. I’m not completely sure of details but I have heard there is a waiting list so check into it sooner than later. The hope lodge is within walking distance, assuming it’s not mid winter at the time of visit.The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments- The appointment line should be able to answer questions you have.

If you wouldn’t mind letting us know what you find out? Future readers will surely benefit from reading your reply. Thank you!

Thank you

You may also want to check with your insurance provider. I was able to get medical transportation for my 30 daily treatments as Mayo is about 90 min from my home. It was such a relief to not have to worry about driving or finding rides each day. They also would have covered accommodations had I needed to stay overnight. There are options out there and organizations that might help. If you believe proton therapy is the best option, I would encourage you to search out ways to make it happen. There are some great resources out there. My social worker at Mayo was able to help me overcome most of the obstacles that stood in my way. I would also recommend reaching out to the American Cancer Society representatives at Mayo. Good luck to you! I know it is a tough decision to make. Relocating is not easy, but can be manageable!

Hi @cayandray, I want to add my welcome. You’ve gotten some great recommendations from Connect members. I’d like to also bring Bill @6608 into this conversation. He’s had proton beam therapy for prostate cancer and can perhaps share his experience with you too.

As for accommodation at Mayo Cinic in Rochester, I like Adrienne’s suggestion of talking with the American Cancer Society, Patient Navigators and Oncology Social Workers. Contact the Cancer Patient Education Center for more information about who you can speak to: http://www.mayoclinic.org/patient-visitor-guide/education-centers/cancer-education/minnesota

Another free service available to you are the concierge services at Mayo Clinic: http://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services or call 507-538-8438 They can help answer questions about travel, accommodation and things to do.

Well thank you very much!!! Your reply has been very informative.
Ray

@adriennef

You may also want to check with your insurance provider. I was able to get medical transportation for my 30 daily treatments as Mayo is about 90 min from my home. It was such a relief to not have to worry about driving or finding rides each day. They also would have covered accommodations had I needed to stay overnight. There are options out there and organizations that might help. If you believe proton therapy is the best option, I would encourage you to search out ways to make it happen. There are some great resources out there. My social worker at Mayo was able to help me overcome most of the obstacles that stood in my way. I would also recommend reaching out to the American Cancer Society representatives at Mayo. Good luck to you! I know it is a tough decision to make. Relocating is not easy, but can be manageable!

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Thank you very much!!! your reply was very helpful. I can’t thank you enough.
Ray

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