We are a rare family
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).
- 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.
- 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.
- 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.