Hi Mamacita,

I sought treatment at Johns Hopkins in Baltimore. It was a 4 hour round trip from our home. We were fortunate to be put up at Hope Lodge in Baltimore. There are many close to major CCC's. Also, most CCC's have arrangements with lodging facilities that offer discounted rates to patients.

Concerning your questions....

-- Did the distance to the CCC make it harder to access support care during treatment and in the months following? (speech therapy, swallow therapy, PEG, followup scans, etc.)

Since were at Hope Lodge, we were only a mile or so from the hospital during treatment. We went home on the weekends. The 4 hour round trip is small potatoes for the level of care I received. It hasn't been an issue. I rarely have to wait for a call back or an email if I have questions or concerns. They offered recommendations for PT and SLP closer to home as well if I needed it.

-- How did you handle medical emergencies (i.e., PEG issue at midnight Saturday)?

I had such an emergency as 10 days after my 2nd surgery a tonsil bed blew out and I was bleeding rather badly. I went to my local ER and after they contacted my team at Johns Hopkins I was transported by ambulance to their ER. I was fortunate that the bleeding wasn't a "gusher". I still lost well over a pint of blood! They were waiting for my arrival at JH and I had emergency surgery to stop the bleeding. Had I needed an IV or minor issues, I'm confident the local hospital would have been able to handle it.

-- Did you have any problems w/pain med prescriptions that can't be faxed/mailed/phoned in under controlled substance laws?

None whatsoever.

-- Any other considerations?

I just responded to another post concerning Johns Hopkins and the treatment I received there. I started out locally and I'm convinced, had I decided to seek treatment there, I wouldn't be here writing. The treatment I received from the first call on has been second to none. This is your life and if a little distance is all that's in the way between saving it, the decision is clear. A CCC is more likely to have the latest equipment and options than a local hospital has. I'm not saying you cannot receive excellent care at a non CCC but I'd rather be seen at a place that lives and breathes cancer treatment on a daily basis.

Positive thoughts and prayers

"T"