Adcetris Day 19, Cycle-1

Gosh mornings are sooo hard! I wake to a body that just aches and a general flu like feeling.
It's still taking till midday to start feeling normal. I guess I can't complain because ultimately I do end up feeling pretty good by mid afternoon and face it, I could be a lot worse! (and have been!).

Motorsport tomorrow!!
I've bled the brakes, replaced all the lifters, checked rocker clearances, replaced some hoses and last of all given the Evo a wash. So the car is ready to race, but am I?. The competition for tomorrows hill-climb is the best we've had in years. I'm hoping for a top 5 finish but that's all in the lap of the gods!

I'll post the results tomorrow evening. Hopefully it is a result and not a story of woe!

Till then...  Ron

Adcetris Day 18. Cycle-1

So much happening on so many fronts at the moment.
It's only three days until I start cycle two of the Adcetris/Brentuximab. Time has certainly flown by!
Just a few aches and pains at the moment, a head-ache during the day. I mention this because I never get headaches so I have to assume it's treatment related. No stomach problems for about a week though.
Still no itch and the only cough I have is one that needs to be provoked to clear the phlegm that seems to build up daily. That's probably related to the fibrosis I have in one lung.

Yesterday's trip to our secret German test facility was quite an experience! While still coming to grips with the technically difficult track I put one wheel on the grass as I was going over a crest  and next thing I was sailing off through the scenery sideways and getting airborne as I careered over dips and bumps. I then slid back onto the track, loosing a bit of speed before nudging a grass bank then coming to a stop. I thought I'd done massive damage to the car going by the wild ride from the drivers seat, But a quick inspection revealed just a damaged plastic splitter that's attached to the front bumper.. well usually attached, I left most of it in pieces all over the paddock.

Other than that, it was a good day and I achieved what I set out to do: Get some seat time and scrub in my new race tyres. They certainly worked a lot better at the end of the session than they did when I started! I'm almost ready now for Sunday's hillclimb, just a few minor things to fix tomorrow before packing the van with spares, fuel and tools.

Today was a special day for the little Toyota AE86 race car. It's been sitting gathering dust in the corner of my various workshops for nearly twelve years, waiting for me to get around to restoring it.
Rolrich Panel & Spray picked it up today with their flat-deck tow truck and will be doing some minor repairs and then colour matching and painting the new light-weight fibreglass parts before I fit them.
Then the little Toyota will be returned home to my workshop where it will get a full rebuild ready for Sarah and I to compete in events around the country at a slightly less hectic pace than what the Evo does.

OK must go.. Sarah's in the spa-pool and I think I'll join her for a soak, my back is killing me!

...Ron

Adcetris Days 16 & 17, Cycle-1

I spent most of yesterday preparing the Evo for this weekend's motorpsort.
It passed a warrant of fitness check yesterday easily, today I'll put a licence on it so I can drive to and from the event. The warrant of fitness guy gave me a friendly wind-up about the state of the drive shaft. It has a torn rubber boot and also moves around a bit on the mounts. I knew this, but I just couldn't be bothered fixing it. After his ribbing I had a quick look through my spare parts room under the house and found a replacement and fitted it. Probably best :)

Today I'm off to a private test track to scrub in the new Nitto race tyres and get some "seat time" in the car. The hillclimb this weekend gives you only 45 seconds in the car each run and that's just not long enough to get used to things. If I drive for about thirty minutes today at the track I'll be at home behind the wheel come Sunday.
Trying to come to grips with a car that puts out 320Kw to the wheels is hard enough, but to be thrown in the deep in with no time behind the wheel and expected to perform is asking a bit much, especially when it's often months between drives.

Healthwise, The ringing in my ears is much worse. I mentioned to the doctors in my email that I thought it had increased slightly, but now it's obvious that there's been a significant increase in my tinnitus.
Hopefully it's not cumulative and it doesn't get worse with each cycle! It's most annoying at night when trying to get to sleep. I had an increase in 2008 when I had cisplatin chemo in Germany and was about as bad as it is now, but it seems to have reduced over the years. Hopefully that is the case this time too.

I ran a slight fever this morning, I woke chilled and aching. It's taken about three hours for me to start feeling better and it's only a slight improvement so far. I'm a little disappointed about this as the fevers had all but disappeared last week. Could be all the toxins running around my body?

The torn muscle in my back is still causing grief too, but I can still detect a small improvement in my health each day, so that's good. The reduction in prednisone is noticeable. Small cuts etc that were taking forever to heal have suddenly healed in a couple of days.

Well must go.. huge day today!   ..Ron

Adcetris Days 14 & 15, Cycle 1

Yesterday was a hard day, I physically couldn't get out of bed until late morning my body hurt so much.
The longer I stayed in bed the longer it was that I went without my steroids and pain relief.
It wasn't a good start to the day and I lost the whole morning and them some. It was around 1pm before I did anything meaningful work-wise.

In contrast today I woke at 7am and dragged myself out of bed, forcing myself to take my medication, some pain relief and something to eat. I did return to bed and slept till 9:30 but when I did wake I felt good enough to face the day.

I emailed both my oncologist and haematologist yesterday, updating them with where I was at. Pretty much a word for word copy of what I blogged on day 13. I asked if they thought I should reduce my prednisone in light of the resolution of my lung and breathing problems. I was also worried about the PML virus and want my immune system working as best it can.
Richard Isaacs replied and suggested I drop my pred to 15mg. This was exactly what I wanted and expected. (Which is good because I'd already started the drop the day before)

My back injury and pain is slowly healing. The pain in the lower back has resolved enough now that I can tell that I have two sites of injury. It would appear I've torn or pulled a muscle in my lower left flank at the back. This is quite uncomfortable and oddly stops me from sleeping on my right side as the muscle spasms if I try to. I'm also trying to ween off sleeping pills. I no longer need them now that I don't itch. However the prednisone still keeps me awake sometimes until the wee small hours. I'll get there eventually.

Other than that it's status quo.

Lots happening in the workshop. I've finally completely finished the Galant VR4 that's been there for over a year. That departs later this week. Today I start digging out my AE86 race car from the corner it's buried in ready for a truck to pick it up later in the week and deliver it to the painters.

It was painted eleven years ago by the same people, Rolrich Panel & Spray, and hasn't seen a day outside since. However the paint needs some minor touching up and the new fibreglass parts need to be colour matched and painted to suit.

This Sunday see's me entered in the annual Alexandra road hillclimb on Mount Victoria driving the Evo. It's a round of the national hillclimb series this year so competition will be stiff and I'm still very rusty. I don't mind admitting that I have some trepidation about this one. It's a fast, scary ride to the top of the hill and I'm not getting any younger. Although I hold the record for the fastest car to the top of the hill, I set it a few years back when I either a lot braver or stupid.. one of the two!


Till tomorrow.   ..Ron

Adcetris Day 13, Cycle-1

Here's where I'm at after 13 days..
Absolutely no cough. Today I had to hack-saw an ignition barrel off a steering column in place. There was no room to get a decent stroke on the saw, so I was sawing away, short strokes, like a mad man for a couple of minutes before I had to stop with fatigue. I think anyone would have been exhausted let alone me. As I sat there regaining my breath I realised that not only was I not coughing, but I was not at all asthmatic. There was not even a hint of a cough. This is unheard of for me in the last couple of years.


No itch. The only time I itch now is either from habit or a genuine non illness related everyday itch that is gone the moment I scratch it. My hands used to feel really good when run under hot water, it would sooth the itchiness and actually gave some pleasure. Now it just feels hot.

No fevers. My temperature is now solidly down at around 36 to 36.5C This is completely normal. Previously it would be up around 37C+ and I had to take paracetamol to reduce the fever. Sometimes it would rise to over 38C and I would get chills and rigor.

No sweating. I no longer sweat profusely for no apparent reason (at the time). I'd always assumed it was the antipyretic (reducing fever) action of the paracetamol. My sense of ambient temperature has returned. I can tell the difference between a hot day and cold one and no longer have to ask people if it's hot or cold because I was sweating at an odd time.

I do have a few problems related to the Adcetris. Left side flank pain remains, however the lower back pain is greatly reduced. This was accentuated by the back injury from a few weeks back.
I get stomach aches sometimes when I've eaten. I'm avoiding certain foods to help with that. It's a lot better than it was in the first week though.

There's a small increase in neuropathy in my toes and fingers, a slightly cold pain and numbness. To be fair most of it appeared prior to the Adcetris and was probably caused by the vinorelbine chemo I had before Christmas.

I'm think that there's also been a slight increase in my tinnitus (ringing in my ears) too. It's too minor an increase to be absolutely sure but the fact that it's started to become noticeable again suggests it has increased. I mentally block it out as it's been with me for years but got considerably worse after a round of cisplatin chemo in Germany in 2008.

Mornings are hard. Everything aches and I generally feel like crap, but by midday I start to perk up and by mid to late afternoon I'm feeling great. That's probably a mix of the prednisone and whatever I've taken for the back pain. Ibuprofen works great but I'm not supposed to take that with low platelets and prednisone, however I do sneak the odd one in.

To be honest I'm extremely surprised (and pleased) to have such amazing results after just one cycle and only two weeks in.
It bodes well for a lasting remission. It's still early days yet but it would appear that this really is a wonder drug in my case.

As of today I've further reduced my prednisone dose to 17.5mg a day as it's apparent that my recent lung problems are not BOOP related. This will help strengthen my immune system, something that's very much needed as one known side effect of adcetris, albeit very remote, is the reactivation of the often fatal PML virus. So the lower the dose the better. However prednisone must be reduced very slowly once at 15mg as my adrenal glands will have atrophied completely and it can take up to a year to reduce back to zero without complications.