I share this because I have always been impressed by my mate's sheer, quiet courage in the face of adversity.
Your email is timely insomuch as I wrote to the “kids” (adults, actually) yesterday giving them an update on my multiple myeloma, the blood cancer that was first diagnosed in mid-2017. Therefore, I can tell you what I told them – which was basically just informing them where I am after yesterday’s meeting with my haematologist.
The original diagnosis led to a bone marrow transplant in early 2018. It was successful but the myeloma came back within a year – unusual because the transplant should see a person right for a good few years. No worries, says my haematologist, the very capable Specialists at the nearby hospital. “We’ll put you on oral chemo tablets (Lenalidomide, which are derived from the thalidomide which caused all those birth defects 50 years back)” which is where I have been since 2018. They worked well and got me back into remission within six months – again an incredibly speedy outcome. No real problem side effects from the chemo so I was happy to take them. (The pills, incidentally, cost around $6600 a box, or $300+ a pill!) but only $6.60 from the hospital pharmacy thanks to the PBS.
Now, the latest blood results indicate that the myeloma, which was in recession for many, many months, has come back. The para-proteins, which are an indication of cancer, started rising before Christmas from two to three to five and, this week, the reading was 10.I do not think it was related, but the chemo pills that I was taking were reduced from 15mg to 10 about six months back and I was allowed to take only three steroids (dexamethasone) instead of five to try and cut the redness in my face which would hit me for two days each week after taking them.
Whether that was coincidental or not, does not matter as all these drugs eventually lose their effectiveness.
So, my specialists are looking at the options. There is a new generation to the Lenalidomide mentioned above but it can cause heart problems – not that I have a bad heart.
But the oncologist is looking to get me, instead, on the trial of Darzalex which has just been put on the Pharmaceutical Benefits Scheme meaning that it can be bought by me for as little as $6.60 when it would normally cost those with myeloma as much as $160,000 a year!
As I am about to go on the third treatment (bone marrow transplant, then chemo and now ??) I am not really eligible for the trial conducted at the hospital on this drug (available mainly for those on second-stage treatment), but I am confident that my oncologist can get me accepted for a trial period.
So, there is bad and good news – the latter being a very modern treatment, probably better than what I am on. I do not feel bad and only the blood results indicate any change. The Oncologist should know by the end of the week if I can take the new drug.
I should have been a paraplegic at 18, a write off in cars since then – and the fall off a cliff in Durban was just testing me! So, I did not worry then, nor do I worry now. I have a good haematologist and a loving family. Thanks for your good thoughts.