Waiting for Brentuximab to arrive.

It's been a busy time these last couple of weeks.
Firstly I'm still feeling really good. My blood counts have improved again, platelets now 47 and haemoglobin 109. I'm a lot more steady on my feet and feel more agile. I'm no longer having to gingerly make my way around, afraid of falling at every step.


Last weekend I entered the Port Road Sealed Sprint in my Mitsubishi Evo and was pleasantly surprised to win outright. It was a rain affected result (I'm sure there was some sort Duckworth-Lewis calculation in the results) with times from only the first two dry runs being counted due to some people not being able to complete their third run in the torrential rain and resulting surface flooding.

Last week I received word from the pharmacy at Wellington hospital that the drug had been ordered and they expected it to arrive within the week. So far it hasn't appeared. (It can only be supplied to a registered public hospital and as the private hospital I'll be using isn't registered with the drug supplier, it explains why Wgtn hospital pharmacy has become involved).

Yesterday I drove up to Palmerston North to meet with private oncologist Dr Richard Isaacs to discuss my treatment and for him to get an assessment of me. The meeting went well and I was surprised just how much medical history and information I have stored up in my head. What was even more surprising was that I managed to get nearly all of it out, with only a few minor things forgotten but then remembered on the long drive home.

One thing that we both agreed on was the need for a CT scan before starting treatment. This will give us a baseline to measure any improvement and to re-stage my disease post Vinorelbine.
I've been running around all day today getting the necessary forms filled out to get an urgent CT scan done tomorrow under my medical insurance. I'll also get a bone density scan done too, I'll pay for that myself as it's only $150 (compared to the $1500 CT cost).
Hopefully my bones haven't become too weakened by the two years of prednisone use.

I had a meeting today with my haematologist, Dr Alwyn D'Souza, and we went over quite a number of issues. He is also keen to get me weened off prednisone, but we need to see what effect the Brentuximab has on my lungs before doing so. If my lungs get better and the cough goes away then it's safe to say I can ween off the pred. If not then it's status quo, or maybe a small reduction, just enough to keep it under control (assuming it would be BOOP or some form of pneumonitis).

My eye sight is absolutely shocking now. An appointment last month with an eye specialist confirmed that I have cataracts as a result of the long term use of prednisone. However in the last few weeks the decline in my focus has been quite frightening to the point I no longer feel confidant driving in certain conditions such as dusk etc. Tomorrow I'm going to see an optometrist and see if I can get a pair of cheap corrective lenses just to get me through the next three months until I can have eye surgery for the cataracts. Lenses won't fix the smokey grey effect of cataracts but they will at least mean I can focus a little better. (hopefully).

So assuming the drug arrives sometime soon I am booked for my first cycle of treatment on Tuesday 31st Jan in Palmerston North at Richard Isaacs clinic. If the drug is late in arriving it will probably be the week following.. there's no hurry I guess. I'm pretty well at the moment, which is good as it means it will have less cancer burden to work on (well that's my theory!)

I'll update once we have confirmation of the treatment date.

...Ron