I orginally wrote this in the previous post but it made the whole thing just way too long. Even I fell asleep trying to read it all in one sitting. ;) So I've split the whole thing into two for those of use that are easily bored :)
The treatment plan....
I have a blood test on Tuesday next week, Wednesday I will get blood and platelets if needed.
Thursday I get the PICC line fitted, and then Friday I start chemotherapy.
It's not Adcetris at this point in time, but rather a palliative drug to tide me over, remove the lymphoma from my bone marrow and improve my quality of life in the short term.
Adcetris should be on the market in a couple of months. My life insurance has paid out so I have the money to pay for it, an estimated $120K for the full treatment. But this is now all in the future and won't happen until I relapse or the current treatment is unsuccessful.
I was about to sign off when I realised I hadn't mentioned my downward spiral with paracetamol.
I've been under the care of a diabetes nurse for a couple of weeks now as we try to come to some sort of equilibrium with regards to my blood sugar counts and my medication. All a legacy of prolonged prednisone use. She phoned me to say she had reviewed my last blood test and that my liver function was very bad.
She felt that it must be one of the diabetes drugs and that I should stop taking Metformin immediately.
I said that it was more likely because I was almost living on panadol to keep my fevers at bay.
I'm aware that you should not take more than eight tablets in 24 hours and I thought I was on top of that. However when I actually kept a record of what I took It was more like 10-12 tablets.
The more I took the sicker I was getting and the higher the fevers were between doses.
So I went cold turkey for a day and started only taking one tablet at a time and stretching the gap out as long as I could, running a low grade fever before finally taking one.
In the last 24 hours I've taken just three tablets and feel great. It just goes to show you that even the most medically self aware can get caught out by not keeping records of just what they are taking and how often. Lesson learnt! :(
Sunday, October 2, 2011
Re-arranging the deck chairs on the Titanic...
I went to see my GP, Kyra Jones, on Friday, with a couple of niggling things.. well actually if I was a normal, well specimen of a human being I guess they might be considered quite serious I guess. But they are still not the sort of things you can get fixed in the cancer day ward while getting chemo.
You see I have a hole in the skin on my elbow that just won't heal. When I was hospital in June I got them to biopsy it and sew it up. At that stage it was just a 3mm hole in my skin. A perfect circle, like a miniature well down into the flesh on my arm. It wasn't infected or anything. Just a spot where no skin wanted to grow.
When I took the dressing off 5 days after the biopsy I discovered much to my dismay that I now had a 10mm hole in my arm where no skin appeared to want to grow. And just to rub salt into the proverbial wound, the biopsy was inconclusive!
My GP took a pic of it and sent it off to the plastic surgeon's for his opinion. Personally I think it's a spider bite, probably White Tail.
The other problem is that I was in terrible pain from my ribs. I'd mentioned to my haematologist when I saw him last that I had pain in my right flank and that I thought I'd pulled or torn something from coughing so hard. He had a quick look but to be honest you don't go to a haematologist for rib pain.
It's like going to a neurosurgeon for an in grown toe-nail.
Then last Monday while in the middle of a coughing fit.. "POP!" and an excruciating pain hit me in the right side lower flank. Like I'd been whacked with a hammer in the ribs.
After that, when ever I moved it would pop in and out like one of those children's clicker toys. Not Fun and much pain!!
So Kyra looked at that too. She listened to my chest and had a poke around at each of my ribs.
In response to each press I'd say "yeah that hurts a little, ..that's more painful.."
Then she found the culprit.. "Oooooh! F@&K!!!, yeah that's it" I said as the rib popped in and then out again upon being pressed.
"Yup, that's broken" she said , "Ya think!!" I replied, as the colour slowly drained from my face.
Codeine is a wonderful drug. It seems to have no side effects on me at all but is capable of completely removing the pain and discomfort from having a rib that pops in and out at whim.
There's no treatment for it. ..could take months. I'll even have to put motorsport on hold. Something that even a bone marrow transplant or high dose chemo has previously never managed to do.
You see I think I damaged that rib in the Great Dunlop Targa crash of 2009. The side of the race seat had dug into my ribs when we came to a sudden stop after crashing over a cliff and landing in a paddock below. It was the only injury I sustained, my ribs hurt for two months afterwards but there was no click-clack, so was probably just cracked. It just took two years worth of bone brittling prednisone and a few big coughs to finish it off.
If I were to race and have even a small "off" the rib could puncture my lung, and with my blood counts and lung problems I doubt I'd survive very long. However I will talk to my doctors at the Blood & Cancer centre next week and see if they will organise an X-ray just so we know exactly what we are dealing with.
..Ron
You see I have a hole in the skin on my elbow that just won't heal. When I was hospital in June I got them to biopsy it and sew it up. At that stage it was just a 3mm hole in my skin. A perfect circle, like a miniature well down into the flesh on my arm. It wasn't infected or anything. Just a spot where no skin wanted to grow.
When I took the dressing off 5 days after the biopsy I discovered much to my dismay that I now had a 10mm hole in my arm where no skin appeared to want to grow. And just to rub salt into the proverbial wound, the biopsy was inconclusive!
My GP took a pic of it and sent it off to the plastic surgeon's for his opinion. Personally I think it's a spider bite, probably White Tail.
The other problem is that I was in terrible pain from my ribs. I'd mentioned to my haematologist when I saw him last that I had pain in my right flank and that I thought I'd pulled or torn something from coughing so hard. He had a quick look but to be honest you don't go to a haematologist for rib pain.
It's like going to a neurosurgeon for an in grown toe-nail.
Then last Monday while in the middle of a coughing fit.. "POP!" and an excruciating pain hit me in the right side lower flank. Like I'd been whacked with a hammer in the ribs.
After that, when ever I moved it would pop in and out like one of those children's clicker toys. Not Fun and much pain!!
So Kyra looked at that too. She listened to my chest and had a poke around at each of my ribs.
In response to each press I'd say "yeah that hurts a little, ..that's more painful.."
Then she found the culprit.. "Oooooh! F@&K!!!, yeah that's it" I said as the rib popped in and then out again upon being pressed.
"Yup, that's broken" she said , "Ya think!!" I replied, as the colour slowly drained from my face.
Codeine is a wonderful drug. It seems to have no side effects on me at all but is capable of completely removing the pain and discomfort from having a rib that pops in and out at whim.
There's no treatment for it. ..could take months. I'll even have to put motorsport on hold. Something that even a bone marrow transplant or high dose chemo has previously never managed to do.
You see I think I damaged that rib in the Great Dunlop Targa crash of 2009. The side of the race seat had dug into my ribs when we came to a sudden stop after crashing over a cliff and landing in a paddock below. It was the only injury I sustained, my ribs hurt for two months afterwards but there was no click-clack, so was probably just cracked. It just took two years worth of bone brittling prednisone and a few big coughs to finish it off.
If I were to race and have even a small "off" the rib could puncture my lung, and with my blood counts and lung problems I doubt I'd survive very long. However I will talk to my doctors at the Blood & Cancer centre next week and see if they will organise an X-ray just so we know exactly what we are dealing with.
..Ron
Saturday, October 1, 2011
Thursday, September 22, 2011
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
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
Thursday, September 15, 2011
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
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
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