We are a rare family

By | Thu May 3, 2018

As a family, we seem to be dealing with rare health issues. When I was diagnosed with bilateral breast cancer, I learned that it was rare (less than 2%) to have cancer in both breasts at the same time.

Then there is my brother. On Friday evening last week we had a phone call that my brother was in hospital experiencing severe dizziness. We later learned that it was a mild stroke in the cerebellum. A cerebellar stroke is very rare (about 1.5% of strokes) – again, we are a rare family. After several days in the hospital in Kitchener they have now transferred him to a rehab facility in Guelph – unfortunately not the one that was close to his house. Fortunately, he was close to my in-laws, and my mother in-law was able to get him some clothes (thank-you). The transfer happened without warning so his wife didn’t have a chance to get him additional clothing. The good news is that he has his own room at the rehab facility as well as internet access. He is doing much better and is in good spirits. It is good that he is getting intensive physical therapy so that he will be safe when he goes home, estimated sometimes mid-May. We have also learned that it is standard with a stroke that ones driver’s license is suspended for a minimum of 3-months. Fortunately, my brother knows the ins-and-outs of the Kitchener transit system (having been a bus driver for 25+ years), so he will be able to use the bus to get around town.

We also had an oncologist appointment for my mother yesterday. Here we learned that she as a rare kind of kidney cancer known as papillary renal cell carcinoma (pRCC).

Last week we had been told that there were no clinical trials; however, yesterday we learned that mom might qualify for a trial at St. Joseph’s in Hamilton. She has now been referred to the doctor there to see if she qualifies. The doctor there is also a surgeon, so we can talk about surgery options as well. The way things look now, there are three possibilities for her treatment:
  1. Clinical trial. This is the recommended first choice because it gives her an additional option for treatment. In addition, the clinical trial is happening because they think a different drug or combination of drugs will have higher efficacy with lower toxicity.
  2. Yervoy plus Opdivo. This is an immunotherapy combination that has worked very well with clear cell renal cell carcinoma – the most common kind of RCC.  It is not clear that it would work for pRCC but it is worth giving it a shot. The issue with this medication is that it is not currently covered as first round treatment for pRCC, so there are hoops that must be jumped through in order to give mom access to it.
  3. Sutant. This is standard of care. With the clinical trial there is a chance she would get randomized to receive this treatment rather that the different drug combinations being tested in the trial.
I’m learning a lot about the coordination of care in Ontario. We all really like mom’s oncologist at the local clinic, which is awesome. He presented her case on Tuesday at the regional teleconference rounds and learned of the clinical trial. There is no sense of competition or anything in this system. The oncologist is happy to recommend / refer mom to the doctor that is managing the clinical trial. If she doesn’t get into the trial she goes back to the local oncologist. In the mean time, the local oncologist is working on getting approvals for both (2) and (3) above.
Approvals are required for any treatment option. As a result, mom isn’t looking at starting a treatment for another 2-3 weeks. Now she is just waiting to hear from the clinical trial folks. While she waits, she is now attending exercise classes twice a week. She is moving better than she has in a long time and seems to be so much stronger. I feel so much better about leaving her, now that I feel like she can take care of herself but also that she has access to care and pain management if it becomes necessary.
And after almost a month a way, and a lot of luck with rescheduled flights today, I am sitting at home preparing this post (most of which I wrote on the plane). I’m feeling a little lost at home, as I’ve been away just long enough that I cannot so easily slip back into routines. Fortunately, the sun is out. My garden got a little crazy while I was gone – with my kale going to seed and sprouting up 4-5 feet!

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