We have a plan !

Sarah and I just got back from a long meeting with Dr D'Souza.

First thing discussed was that Adcetris is not available outside the USA at this point in time.
However the drug company is looking at releasing it to market in late October. (ish)

So in the meantime we are going to start palliative chemo with the drug Vinorelbine as soon as next week, depending on when the day clinic can squeeze me in. I'll also be fitted with a PICC ("pick") line in my arm possibly first thing Monday.

PICC lines are great,  I had one fitted when I had my stem cell transplant. No more failed cannula insertions and I can have blood samples taken and blood given all through the same line.



He decided to use just the one chemotherapy agent at this point in time is to avoid the possibility of further lung damage. If lung damage occurs we can change to another drug, probably Gemcitabine, or add others to the mix.

The hope is to gain a reasonably long period of remission with the knowledge that should/when I relapse we have Adcetris to fall back on. It having been released worldwide in the interim.

So roll on next week and let the treatment begin! I'm looking forward to waking up one morning and having no itch! Isn't it funny what you focus on.. I've been scratching non stop like a mad man for 18 months now. To have it disappear will be cause for great celebration, despite all the negativity associated with cause.

More posts as things come together..   ..Ron

Compassionate Funding declined.

My haematologist just phoned and postponed my meeting with him until next week.
The reason being that the drug company no longer will supply Adcetris on compassionate grounds.

Next step is for the medical panel to meet next Wednesday and put an application for exceptional case funding to Pharmac. Word on that should be back late next week or early the following week.

We are not too hopeful as the drug is so expensive, however they may ask for funding for only half a course to reduce costs and increase the chance of approval.

I made sure he understood that Sarah and I believe this drug to be my best hope and that if all else fails we are prepared to fund it ourselves.

Next Thursday we will touch base for an update and I'll be given another couple of units of whole blood as I seem to be slowly winding down energy-wise.

I've been flat out using what energy I do have to finish jobs around the house and workshop.
On Tuesday I did a wheel alignment and suspension setup on a Ferrari F430 Challenge race car.

I had a volunteer doing all the spanner work for me and I just pointed at things and told him what to do :)  (A big thank you to Glen Clemas for all his help.)


Today I'm running power cables and conduit out to the new garage. Although I might wait for the weekend to secure all the conduit, as I will have someone to hold the ladder.  :)

...Ron

Life in limbo

Sarah and I met with the haematologist last thursday. We were hoping for some news.
There was none. No word from the drug company at all.

We are hoping that they will supply the drug on compassionate grounds and include me in the clinical trial. My Doctor seemed less positive that this would be the outcome than he was earlier the week before.
There are other avenues.. A process whereby a team of experts on a special panel, apply to pharmac for funding (I feel this to be unlikely to be approved due to the high cost).
Another option may be to pay for the drug ourselves from my life insurance.

I have another meeting with haematology this Thursday for an update.

I've been working with a diabetes nurse to try and rein in my high blood sugar counts that are a direct result of the prednisone. We have been playing around with different  balances of the drugs metformin and gliclazide, and seem to have found a happy balance after a few failures.
Net result is I am now putting on weight slowly and have more energy.

For some reason my blood counts have also remained a lot more stable and are not dropping every week like they were. This means that although I'm still quite weak and fatigue with very little exertion, I can do a lot more than I could in previous months. I'm able to go for long walks and perform my day to day tasks without too much discomfort. I can't see me being able to work on cars again for quite some time though.

I had a thoroughly enjoyable day of motor racing last Sunday 4th at the Shelly Bay sprint.
I had made it a goal to be there a couple of months back when I was stuck in a hospital bed.
Thanks to a small team of helpers I was able to get into the car and drive over the course fairly briskly.
I did give myself a bit of a fright on the practice run as I was so unused to the power and speed.

I did two more runs after that, each one faster, before retiring for the day and going home to rest with both myself and the car still intact.
The end result was fourth over-all and 2nd in class. Not bad for a guy that's been driving a hospital bed for most of the last three months!  :)

A big "Thank You" goes out to my team of helpers and crew, John Raptis, Mark Scanlan, Jacob Boyd and of course my wife Sarah who supports me in every aspect of my life.

I'll post some video footage up as soon as I find the time to edit it. (We had three cameras mounted on the car for my last run).

..Ron

A small team of helpers was required to help me get in and out of the car
and keep things running smoothly

Lining up ready to run (about to do a "burn out" to warm the tyres)

On the start line with the clock counting down.

Repost of someone elses experience with Adcetris: "My SGN35 experience"

I found this blog post from a man that was accepted on the SGN35 (aka Adcetris, Brentuximab) clinical trial. It's pretty much the only first hand account of what the drug is capable of that I've found.

My husbands long journey with Hodgkin's: My SGN35 experience

Lines.. Both canulation and those to be read between.

I'm still here, stuck in this bed. I don't mind so much anymore, home isn't the best place for me anyway.
I've taken advantage of every opportunity or service on offer. My meals are now back to where they were last time I was here for a long stay. I can order lots of extras from the kitchen. However experience had taught me to avoid the hot-dogs, chips and chicken nuggets. I dog would probably send them back.

Tomorrow I am in surgery to have two wisdom teeth removed. This would have cost me a small fortune privately but when in hospital it's free. I just told the doctors that I would be at risk of infection if left in and that I'd need extra blood and platelets for the extraction. They agreed and presto I was booked!

I had a terrible, terrible 24 hours over the period of monday night/tuesday. The doctors had commented that my fevers were resolved and that I must have had an infection that was now gone. I said "well... nooo.. lets just say I've had a couple of convenient headaches whereby I've asked for panadol". They said they needed to know if I was still developing fevers so they could see if the medication worked.

My response to them was that after 18 months of personally monitoring my temperature I could assure them that I would still be running massive fevers if it were not for the fact that I now know the warning signs (once I get to 37C+ will always run a full fever if left unchecked). Apparently my word was not good enough and they asked that I take no panadol for 48 hours. I said they could have 24 hours max as when I run a fever I get very sick with rigor, chills and coughing.

Sure enough I ran three full fevers in that 24 hour period.
During that time my IV cannula stopped working for the third time in three days.
From experience the chances of getting a new line into me while febrile is slim in the extreme.
But still they tried. After-all I have those critical IV antibiotics to be infused (the ones to kill the bugs that are supposed to be giving me the fevers ;)

Two doctors and one senior theatre nurse all tried and failed. There were six failures over a period of nine hours. To say I was over it would be an understatement! The stress of running a fever and having a continuous line of "experts" pushing a bloody great butterfly needle into your arms in the hunt for a vein just wore me out completely.
Finally one doctor thought he had it sorted. He managed to half insert the cannula into a vein in my left arm that I know to be heavily scarred and I told him this.

He suggested that the reason it would only go in half way was because it was against a valve. I said scaring. As soon as the nurse tried to flush it with saline 20 minutes later  it hurt like hell and would not flow. I had to tell her twice to stop pushing. Why is it that the younger they are the less they are inclined to believe the patient might actually know something? I told her, once she had stopped trying to blow my elbow up like a balloon, to draw back on the syringe. It wouldn't flow that way either. It was blocked.
Another failure. Two hours later the same Doctor re-appeared and had his last attempt this time under my direction. (I pointed him to the best vein and suggested that maybe hot water in a glove held against the arm would also help. This is std practice on the cancer day ward)

There's no word on my treatment plan as yet, even though I have asked. This actually gives me some hope of getting the new drug. I don't want to get my or anyone else's hopes up because there's no firm reason to support my hunch but I do read body language very well and I've seen and heard enough to realise that there's something happening behind the scenes. They too probably don't want to get my hopes up and are probably working hard in that direction but with no firm answer. I hope they succeed in obtaining it.

I checked the proposed price of the drug online yesterday... around NZ$120,000 for the full treatment, ouch!!