Hope can be a dangerous thing when it comes to our health

I mentioned in a blog post a couple of weeks ago that I was being considered for a newly-funded drug to have another crack at my myeloma. It’s now become available and I am into my first round of 21 days on pomalidomide (tradename Pomilide). I’ve only taken 2 capsules so far, which isn’t long enough for any side effects to show up.

I also have to have twice-weekly blood tests, starting today, and possibly twice-weekly blood and/or platelet transfusions, as these are expected to drop somewhat. I’m having my first tomorrow. The aim is to keep the platelets above 15, which is very low. Today, they are 20 x 10⁹ /L, which is also well below the normal range. Both levels are a considerable bleeding risk, and my current mid-twenties level has put me in the hospital once. Fortunately, my most recent spell in hospital showed there were no clots in my lungs, which would have been very tricky to treat with low platelets.

I’m very glad the pomalidomide is now fully funded by Pharmac. It was a pleasant surprise when they announced it on 11 July. To be honest, we haven’t had high hopes for it, especially given it had only a 30 per cent success rate with people in my condition, but it’s a good enough chance to give it a go. Even though the odds are half of what I had with lenalidomide, which didn’t appear to work at all.

The drug that people are pinning a lot of hope on is daratumumab, which is high on Pharmac’s wish list for funding but is horrendously expensive (over $200k per year if you pay for it yourself). That is simply out of the reach of our savings and income. I do worry about the strong attachment some people have to it being their last chance of extending their life with myeloma. We know it can work for several years, but it has been unaffordable for Pharmac, even though it is available in nearly 50 countries around the world. I worry that people who desperately want it will be very disappointed if it isn’t fully funded for people for whom all the other treatments have failed. It can be very damaging to people’s emotional state — cancer is bad enough without feeling a good treatment is denied to you.

When the final outcome of myeloma is almost inevitably death, not being able to get a treatment that could let you live many more years can be emotionally crushing.