The Happiest of Holidays

The strong survive but the courageous triumph.

It’s a Christmas miracle! My lung pneumonitis is gone! My medical situation is so complicated that it took a LONG time for this mystery to get solved. I did have to endure a bronchoscopy this summer – something I NEVER wanted to go through, but it was handled so well by the staff at Credit Valley hospital that the worry was much worse than the actual procedure itself. The only part of it that I even remember was that my bite block trapped my lip between it and my teeth at one point, and it hurt quite badly. I was trying to fix it, and they kept grabbing my hands and saying, “relax, Joanne, we are almost done.” Note to my RT friends – if you have a patient fidgeting about and reaching for their mouth – check the bite block!  

So after 7 months of symptoms and after trying multiple courses of antibiotics and one whopping dose of prednisone (that really packed on the pounds) – none of which helped at all – my hematologist finally allowed me to stop taking my oral chemo medication, Dasatinib, on a trial basis. My lung immediately started to improve. No more crackles and wheezes whenever I laid my back or right side. No more weird cough. No more shortness of breath with a simple flight of stairs! 

It is a common side effect of Dasatinib to cause fluid buildup in the pleural space (the area between your lung and chest wall). But, according to the CML expert at Princess Margaret, he’s never known the fluid to build up WITHIN the lung as it did with me. As far as he knows, it’s never happened to anyone in North America, and he has only heard of a few remote cases reported in the rest of the world. The thought is that the radiation I had for breast cancer last fall weakened the underlying lung allowing the Dasatinib to get in there and do some damage. 

My CML cannot go untreated or my white blood cells will grow unregulated in number and take over the rest of my body! My hematologist recommended another drug in the same family as Dasatinib called Tasigna. I needed approval to be prescribed it, and I needed to find funding for it as it is made by a different manufacturer than Dasatinib. Its cost is almost $4000/month. Novartis and Trillium came through, and I don’t have to pay any of the cost of the Tasigna out of pocket. Phew!  

I’ve been taking Tasigna for 4 weeks and the only side effect I’ve noticed is hair loss. Trying not to panic about that as it happened (and subsequently stopped) when I also started Dasatinib. Knowing if it is working to keep my CML in check will take a while.  Blood work will follow. I also need to check in with my cardiologist as this drug presents with a whole new set of potential side effects … of course!

I had a checkup at Princess Margaret last month with my myelofibrosis doctor, and everything on that front is status quo. We remain in a watch-and-wait pattern.  More good news is she said that more research has come out that people with my specific MF mutation (CALR) tend to live longer without treatment than the 5-7 years they told me 6 years ago. GOOD NEWS!

So. What now? Now I hope the many doctors’ appointments slow down, and I can spend longer periods of time at our cottage in NB! Ella is living there and going to college, and I’m looking forward to joining her as much as possible AND sneaking into NS to see the fam as much as they’ll have me!

I have these 2 diseases that will never go away and eventually will lead to some very serious complications, but it has slowed me down and made me truly appreciate life (may sound trite  … but it’s TRUE!). There are many scarier and more immediately deadly diseases out there, and I am blessed to have these 2 that are, mostly, invisible. 

I may have MF and CML, but they don’t have me! And I’m ready to survive the next challenge.

I wish you all a blessed holiday season!

Much Love,

Joanne (and Luna – who was less than enthusiastic about the photo shoot!)