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

Feeling even better!

Thursday I had my weekly blood test.. haemoglobin had climbed from 102 to 110.
That's the first time I've had a natural increase in my counts in a very long time.
I've been relying on blood transfusions to keep me going and even then the count would range between mid 80's and low 100's (less than 135 is classified as anemic). It looks like my bone marrow has recovered enough to start producing blood again. Thanks to the palliative chemo.

My PICC line was removed last night by the district oncology nurse as it's unlikely I will need it anymore for blood transfusions or chemo. Brentuximab can be administered via a cannula and as the cycle is every three weeks it's not worth keeping the line in. The weekly changing of the dressing and flushing of the line plus having to keep it dry has been a real hassle, I'm glad it's out.

My energy levels are at the best they have been since March/April 2011 before the Nocardia bug really hit me hard.
I've been fit enough to be working both around the house, (I got the weed-eater out believe it or not!) and on cars.
Today I gave my Hiace Van a full service and repaired some things that had needed doing for months.

I've still got this really annoying cough though. It's annoying to both myself and those around me. I'm really hoping that it will vanish when the new treatment starts. It has with previous treatments but then I didn't have BOOP back then so who knows.. (I won't even start on the continuing itch)

I was phoned by Travis (the Blood & Cancer ward registrar) earlier in the week to ask my body weight. Apparently he is now in charge of obtaining/ordering my Brentuximab/Adcetris and not the Doctor in Palmerston North. I have no idea what the situation is. It could be that the first cycle will in fact be done at Wellington hospital and as a result they must get the drug from overseas.I'm sure I'll find out the full story in the next week or so or when someone comes asking for a very large down payment.

For the last twenty or so months I've kept an excel spread-sheet of my general state of health, what drugs I'm taking and body temperature etc. One thing I log occasionally is my impression percentage-wise of how well I feel compared to what I'd expect if I was fit and well (ie 100%). It's the only way of truly knowing where I am at as I'm forever thinking I'm better than I really am and have no way of relating it otherwise.
Last week I considered myself to be at 40% and today I'm feeling 50%. If you think that is low then consider this.. Back in June when I was hospitalised with the life threatening Nocardia infection and pneumonia, I entered a figure of just 2%.

At that time I was too weak to walk, my muscles had atrophied so much my legs looked like bits of string with a knot for the knees!. However on Thursday night I was sitting outside having a quiet drink of low alcohol beer and some snacks with friends when the phone rang. I assumed it was the district nurse with my blood counts so I jumped out of my chair and ran for the phone. It wasn't until I got to the phone I realised that I'd just ran for the first time since April last year! Another milestone :)

OK.. it's getting closer to treatment time, we have aimed for late January and hopefully that's what will happen. However I'll believe it when I see the drug here in NZ. I'll post an update as soon as it arrives.

PS: I'm racing at the Port road street sprint next weekend, I'll let you know how that goes too!  :)

...Ron

I'm Feeling Good!

It's important to state that because last week I felt like crap!
So far I've spent most family occasions sitting on the couch, and when I did extend myself by venturing outside for a game of petanque or to socialise, I'd soon start feeling fatigued and have to return to the couch.

This week I've slowly been feeling better and better. I still fatigue easily but it takes more effort to get to that state. Today I manged to wrangle a unit of whole blood out of the good people at the Wellington Blood & Cancer Centre. I'd hoped for Two units but Travis (registrar, great bloke) pulled the plug on that request. You can't blame me for trying! I'm feeling really good as a result of the one unit and I'm hoping my counts will stabilise at the new higher level and get me through January in good stead.

I've spent the last week working to finish the car that's on my hoist (it's been there nearly all year) but the more things I fix, the more things I find wrong! The car was stolen and recovered and the mongrels that started to strip it before being caught have just ripped fittings out and butchered parts from one end of the car to the other. I think I have ventured up to "Pick-A-Part" (car dismantling yard) every day this week.
I'd have gone again today to grab a fuel pump housing but it's raining cats and dogs. The old housing having been mangled by someone with the mechanical aptitude of a chimp.

Still no contact from Dr Richard Isaacs, the man that will treating me, but that's not too surprising considering the time of year.
So no news on when treatment will start.

Tomorrow is new years eve. Sarah and I will spend it at my brother and sister in law's. Hopefully not entirely on the couch, but with this rain who knows?.
Then we are into 2012 and I'm going to hit the road running. I feel great, I have a new (hopefully "miracle") drug on the way and Sarah and I have made some awesome plans for the future.

Wishing you all the best for the coming year!  ...Ron

Merry Christmas :)

Gosh Christmas Eve already! Where did this year go? Spent sitting in a hospital bed me thinks.
2011 was not a good year for me, in fact probably not a good year for New Zealand or a good many other places in the world. Here's hoping 2012 will more than make up for it.

It's been nearly three weeks since I last posted. In that time I've been chemo free and relatively energetic.
Although my energy levels seem to be waning again now, and I cough a lot when I exert myself.
There's been no progress on a schedule for treatment with Adcetris. I would have thought that I would have heard from the oncologist by now and some sort of plan laid out.

I'll be making some phone calls once the holiday break is over and trying to get some answers.
My main concern is that I feel slightly symptomatic. There's a slight occasional ache in my lower pelvis where the lymph node biopsy was taken a few months back, I itch a lot, cough more and still run at least two low grade fevers every day. (sub 38C) So as you can imagine I'm very keen to start treatment.

My blood counts are OKish, haemaglobin is a little low at 104 (normal range 130-175) which would explain the lack of energy. I will have one more blood test next Wednesday and if my counts are stable then I'll have my PICC line removed from my arm. That will be good, means we can fire up the spa-pool and I can enjoy a long soak with a low alcohol beer or two. :)

I found a post from a woman who's son was treated with Adcetris following several unsuccessful chemo regimes. He is now in remission, although she hasn't given the full time frame it's still good to hear stories about other Hodgkin's Lymphoma patients who have had positive results on the drug.

I've been working in my workshop again for the first time since May. Only slowly and in short bursts but I've got a lot done on the car that's been there for most of this year. Slowly getting all the upgrades the customer requested. Luckily he is in no hurry to get it back and the longer it sat there the more things he thought of to get done.

There's now just a few plywood panels to install in the new garage, and a few electrical fittings to connect and it will be ready to be signed off by the council. My father in law has been helping us with that when he can, which is good because I can't man-handle the plywood sheets. :)
However I must say I am a lot more stable on my feet than I've been for some time. I no longer feel like I am at constant risk of falling over, So I must be building some new muscle. My weight is just a tad under 70kg, about 5-8kg under my ultimate goal weight. That won't be achieved until I'm cancer free and off the steroids.

I've set a goal of competing at the "Port Road Sealed Sprint" on Jan 22nd in the Evo and have purchased some new "Federal" brand race tyres to that end. There's been lots of talk lately about how good these tyres are, with them now being the official tyre for Targa competition. A friend of mines son Daniel has used his contacts to get me a set at a very good price, so I am looking forward to testing them on the tight Seaview road circuit. Hopefully I won't be as rusty behind the wheel as I've been at the last two events I've competed in. ;)

Well That's enough from me!
Wishing everyone a great Christmas and New Year Break and that 2012 brings all that you hope for.!  Take care ..Ron

A plan..

I received a phone call last night from my haematologist, Dr D'Souza.
He was still working and it was well after 8pm. He said that he had spoken to the private oncologist in Palmerston North and that he was keen to have me as a patient and to give the treatment in his clinic.
This would involve driving to Palmerston North once every three weeks for each of the cycles of Adcetris. Treatment would probably start in late January. This suits me just fine as it gives me a nice break over the Christmas period. Intitially we will go for 4 cycles and appraise the results before deciding on more.

Apparently the doctor orders his drugs through a company in Auckland, so he'll be in touch if they need payment up front. Something I'm fairly sure would be the case when you are importing over $80K worth.

It's been a bit of a weird week, up and down. Feeling well one day and horrible the next.
Some days I feel like I am climbing the walls.. almost like being a prisoner in my own body.
It's a mix of the steroids and the chemo. Today I'm not too bad.
I had two units of blood on Monday and that made me feel quite unsettled for a couple of days.
Sometimes the blood sparks you up straight away, other times it takes a few days to work.
It almost feels like you need to run it through your system for a while before it cleans up..  it's a strange thing.

Tomorrow I'm back into the day ward for a blood test. My counts are still a little low going by a test I had on Wednesday so we just need to see which way the counts are heading and give blood or platelets accordingly. Going by previous cycles I should start making new blood again by this weekend anyway. Then it's six weeks of no treatment and hopefully feeling pretty good!

I've got a tonne of stuff to catch up on both around the section and in the workshop, so I'm hoping my energy levels climb high enough. I've been a bit slack when it comes to going on the treadmill and stationary bike. I injured my achilles heal a few months back and I'm still limping.
Perhaps I'll make that a goal... to be a lot fitter for the new year.

..Ron