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Treatment far from home

The cancer treatment you need isn’t always near your home. Is it a viable option to consider treatments that might be available far from home? Here’s one survivor’s story:

Hi. I’m Joan Janssen and I was diagnosed with Stage 3C Ovarian Cancer in 2010. I was able to get the front line treatments I needed as well as treatment for 2 recurrences, right here in Madison, near where I live.

But after 5 years with standard chemotherapy, I knew I would benefit from some of the newer drugs being offered through clinical trials not offered here in Madison, and some even very far from home. Through some on-line searches I found a drug I thought sounded promising and started emailing all of the locations offering the trial near us (Minnesota, Illinois, Michigan, and Ohio). But I was quick to realize that none of these sites were seeking enrollees and so I broadened my search. Long story short, in 2017 I ended up as part of a clinical trial at Dana Farber Cancer Center in Boston. I traveled back and forth to Boston once a month for 1 1/2 years. When my cancer showed growth, I stayed with the Boston doctors and switched trials and continued my back and forth trips for another 18 months. This new trial required infusions and visits every 3 weeks. Three total years with trips at least monthly.

Honestly, it was grueling and costly, but the drugs were pretty manageable.

Several things worked in my favor:

a. I was lucky to have a large group of friends and family who indicated they wanted to join me so I always took a travel buddy. This made exploring a city far from home way more fun.

b. I was lucky to have gotten a trial in such an interesting and walk-able city. Mass transit wasn’t difficult and made city transportation much cheaper. But often we would just walk and walk and walk.

c. Hotel rooms in Boston can be ridiculously expensive but I found free options through Hope Lodge, Hospitality Homes, and American Cancer’s Hotel program.

  • Hope Lodge is similar to the Ronald McDonald program. Minimum stays are 3 nights , but you can stay for months if your medical needs necessitate and meet their criteria. Arrangements are made through your doctor’s office.

  • Hospitality Homes matches Boston patients with homeowners who are willing to house them. The cost is a contribution of $25 per night to the Hospitality Homes Program. Once I decided to try this program, I was matched with a couple in a nearby suburb. He is a surgeon and she is a homemaker. I stayed with them probably a dozen times and always looked forward to my stays and often felt like I had become a member of their household.

  • American Cancer Patient Services has hotel partners that are willing to extend free rooms to cancer patients traveling for care. This is hit or hiss but when you get a room I found them to be in really prime hotels that I normally wouldn’t book into. To make this program work out, I would book something in my price range and wait to hear back from American Cancer and then cancel my hotel if I got comped. It was complicated and time-consuming but saved me money and I got to stay at all different locations around the city over those 3 years.

  • To keep my airfare as low as possible, I made good use of frequent flier points and programs, kept a close eye on flight costs and booked early enough to capitalize on that. If you find yourself looking at out of town travel and are on a tight budget, be sure to meet with the social worker at your clinic. At Dana Farber they were offering vouchers for flights to people with a need (based on a sliding scale). As I recall, American Cancer also has some. It’s definitely worth asking around.

I had a good experience and the trials gave me 3 more years. I followed my Boston experience with care at MD Anderson in Houston because that is where a couple of my family members live and because MD Anderson offered me the next trial I needed. Totally different experience, totally different city. But that’s a whole other story.

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