Treatment far from home?

I live in Chicago suburbs, receiving treatment for recurrent SCC of the tongue. My tumor(s) have failed to respond to a Carboplatin/Abraxane regimen at the University of Chicago, and so far it looks as if my options there are palliative care or total glossectomy/reconstruction, neither with great survival rates.

It's been suggested I seek an opinion from MSKCC in NYC. If I do that and want to seek treatment there, how would that work logistically? Would I have to move out east for the several months of treatment? Has anyone on this forum undergone treatment at a hospital far from their home?

Any experiences anyone can share would be most appreciate.


  • MrsBD
    MrsBD Member Posts: 615
    Closer to home

    Have you checked with Froedtert Hospital and the Medical College of Wisconsin? They are doing amazing research into immunotherapy. I added a link in the Member Resources Library section on this site. It's called "Conversations with Scientists " and goes into some detail about their research, programs, and clinical trials. I had radiation and Erbitux at a different medical center, but my doctor is in communication with the Medical College. I hope you find a suitable program. Don't throw in the towel. There are new treatments available and much reason for hope. 

  • donfoo
    donfoo Member Posts: 1,770 Member
    Get second opinions


    You need to get a second opinion or two. Accepting palliative care means they are saying your cancer is not curable so basically throwing in the towel. Surely, there are other options that will be offered by other specialists.

    During treatment at a distant facility you would need to find temporary housing. Hope Lodge offers housing for cancer patients. There are other options available that the hospitals know about. Good luck don

  • SylMarie
    SylMarie Member Posts: 91 Member
    I second the second opinion


    MSKCC is very highly-ranked for cancers in general, but do your research specifically for oral cancers. You want an institution that has ENT/HNC-heavy rosters. You want a second opinion from a center where many doctors deal with your specific type of cancer on a daily basis. I have learned these things from the great people on this forum. Have you checked into Johns Hopkins, as one example? I have just started my own journey there. In fact, I had my first consult last week and my surgery is scheduled for this Thursday. I traveled from South Florida to Baltimore. Any adjunct treatments I can have locally, closer to my house. They work with a local oncology/hematology practice and give them the protocol, which local doctors will follow. This is true of most major centers. Good luck to you.

  • SusanUES
    SusanUES Member Posts: 125
    Bob, if you do opt for MSK...

    I'm here for you, meet, run errands, whatever I can do for you, I'm here.

  • nino5
    nino5 Member Posts: 29