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
Saturday, January 14, 2012
Friday, December 30, 2011
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
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
Saturday, December 24, 2011
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
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
Thursday, December 8, 2011
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
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
Friday, December 2, 2011
and up..
It's Friday afternoon December 2nd.
I've just completed my last session (day 8) of my third and now last cycle of Vinorelbine.
Dr D'Souza had suggested today when we spoke that I have a fourth. I declined.
I don't think the benefits are outweighing the results and I want to be well over Christmas/summer break. My blood counts were a little low today, but as I feel so good I suggested we put off a blood transfusion until after the weekend. So I'm back in first thing Monday for another two units.
That then lead us on to Brentuximab (Adcetris). He has given the hospital pharmacy the go ahead to order the drug, just four cycles for now at $20K-ish per cycle. We will then evaluate the results and decide on how many more cycles from there. Each cycle consists of a dose of 1.8mg per Kg of body weight (70kg), given once every three weeks. There's a possibility that we could run anything up to and beyond nine cycles.
He is applying to the Ministry of health for permission for the first cycle to be administered at Wellington Hospital on the grounds that if I have any sort of reaction to the drug they will be able to give me immediate treatment. Something not available in a private clinic.
Other subsequent cycles will be done by a private oncologist probably in Palmerston North, The only one in Wellington is currently unavailable. The reason for all this is that the NZ Govt won't pay for treatment associated with a privately imported drug. I won't even touch on the politics of how unfair that all seems. I'm just happy to have some progress.
Yesterday and today I have had a good amount of energy. Not a huge amount, anyone else would probably call an ambulance if they suddenly started feeling like I do right now. But it's enough to be able to walk around and by pacing myself I have managed to get a fair few errands sorted and things done. I even put a spanner to the car that's been on my hoist for the last six months.
I mildly bumped my arms a couple of times against things and lost a few chunks of skin, such is the damage that prednisone has done in thinning my skin. I think I'll make up some sort of sleeve arrangement to protect my forearms.
I suggested to Sarah that we buy a little run-around for her to drive so that she saves a few dollars on petrol and doesn't wear out the Subaru Impreza STi which is now getting up in the K's, but too good a car to move on. She agreed and we found a really nice low K's Toyota Vitz that by chance was being sold on Trademe by an old friend of mine from the motor-trade.
The only fault we could find was that the air-con wasn't working and I told him that my experience with air-con systems is that they seem to cost around $500 to fix every time they break down. He baulked at the figure and we negotiated a really good deal on the car based on him fixing the air-con at his cost through his work. (he just phoned to say my price was on the money as it needed a new part).
Net result is we got a nice little Toy for $3k under book value and fitted with new tyres and 16" alloy wheels. Bargain!
I've just completed my last session (day 8) of my third and now last cycle of Vinorelbine.
Dr D'Souza had suggested today when we spoke that I have a fourth. I declined.
I don't think the benefits are outweighing the results and I want to be well over Christmas/summer break. My blood counts were a little low today, but as I feel so good I suggested we put off a blood transfusion until after the weekend. So I'm back in first thing Monday for another two units.
That then lead us on to Brentuximab (Adcetris). He has given the hospital pharmacy the go ahead to order the drug, just four cycles for now at $20K-ish per cycle. We will then evaluate the results and decide on how many more cycles from there. Each cycle consists of a dose of 1.8mg per Kg of body weight (70kg), given once every three weeks. There's a possibility that we could run anything up to and beyond nine cycles.
He is applying to the Ministry of health for permission for the first cycle to be administered at Wellington Hospital on the grounds that if I have any sort of reaction to the drug they will be able to give me immediate treatment. Something not available in a private clinic.
Other subsequent cycles will be done by a private oncologist probably in Palmerston North, The only one in Wellington is currently unavailable. The reason for all this is that the NZ Govt won't pay for treatment associated with a privately imported drug. I won't even touch on the politics of how unfair that all seems. I'm just happy to have some progress.
Yesterday and today I have had a good amount of energy. Not a huge amount, anyone else would probably call an ambulance if they suddenly started feeling like I do right now. But it's enough to be able to walk around and by pacing myself I have managed to get a fair few errands sorted and things done. I even put a spanner to the car that's been on my hoist for the last six months.
I mildly bumped my arms a couple of times against things and lost a few chunks of skin, such is the damage that prednisone has done in thinning my skin. I think I'll make up some sort of sleeve arrangement to protect my forearms.
I suggested to Sarah that we buy a little run-around for her to drive so that she saves a few dollars on petrol and doesn't wear out the Subaru Impreza STi which is now getting up in the K's, but too good a car to move on. She agreed and we found a really nice low K's Toyota Vitz that by chance was being sold on Trademe by an old friend of mine from the motor-trade.
The only fault we could find was that the air-con wasn't working and I told him that my experience with air-con systems is that they seem to cost around $500 to fix every time they break down. He baulked at the figure and we negotiated a really good deal on the car based on him fixing the air-con at his cost through his work. (he just phoned to say my price was on the money as it needed a new part).
Net result is we got a nice little Toy for $3k under book value and fitted with new tyres and 16" alloy wheels. Bargain!
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