Finally after more than 6 months of blood transfusions I have started producing my own blood faster than it gets used up. My blood counts today are higher than they have been in ages, and all done under their own steam.
Last Wednesday I went into the Blood & Cancer day ward and was given a unit of platelets and two units of whole blood.
I'd been making no new blood of my own due to both the Hodgkin's infiltration of my bone marrow and the myelosuppressive (suppresses bone marrow and therefore production of blood) nature of the chemotherapy.
The plan was to give me a big enough top up to get me through till today, a period of seven days, so I could visit family in Christchurch.
The doctors did not want me to travel as my neutrophil count was almost zero, at 0.1 This left me with almost no protection from infection and at risk of neutropenic sepsis and fever.
They wrote me a covering letter to give to the doctors at Christchurch hospital outlining my illness's and stating that I was traveling against their advice. They were concerned I'd pick up a rogue bug on the airplane and have no defence against it.
Well personally I've never been one for shying away from doing something just because it might kill me. Heck if I didn't do anything for fear of dying, I might as well not get off the couch.
So as you can imagine I am very, very pleased to find out that not only was I not at great risk while visiting my sister and family, I was actually producing new blood cells as I sat on said couch and watched New Zealand win the rugby world cup! Awesome :)
I did of course take precautions while away. I wore a surgical mask on the plane and avoided possible sources of infection such as raw food and contact with pets.
I next have chemo on Friday 4th November so I will have a good chance to raise my blood counts further and build up a bit of a reserve before they are wiped out again. However I'm sure that they will then return even stronger again after that.
Cheers! ...Ron
Tuesday, October 25, 2011
Friday, October 14, 2011
Haematomas and more of the same.
I was kind of hoping that this palliative chemo would make an instant improvement in my level of comfort. So far I feel exactly the same, perhaps it's way too soon and perhaps I expect too much based on previous experiences with higher strength regimes.
I had a session of vinorelbine last Friday and another today.
I am still suffering from the low grade fevers, constant itch and fatigue. Perhaps things will improve once this second dose does it's job.
My haemoglobin and platelets are low so they gave me two units of whole blood today as well, That should perk me up a little over the weekend.
Sarah and I are planning a few days away next week so I'll be given a little extra blood mid-week to see me through to the week after. There is no chemo next week.
Last Thursday was the day they inserted the PICC line. It didn't go well.
I should have noticed that my right bicep, where the line was fitted, was very tight and swollen.
I didn't really think about it until the blood started pouring down my arm as I drove away from the hospital.
The line had leaked where it goes into the vein, filling the surrounding tissue with blood (a haematoma) and then ultimately pushing it's way out through the point where the line enters the arm.
I should have taken a picture it was a huge mess!
I returned to the day ward just as the team were leaving for the day. I became the centre of attention for a while, the nurses fussing over me, changing the dressing, only to have it leak again. Then one of the doctors suggested I be given another unit of platelets to help stop the bleeding. I didn't get home till quite late.
Today was much the same time-wise. Arrived at 8:30am and departed at 3:30pm. It all makes for a very long and tiring day.
I'm hoping for a relaxed weekend.. fingers crossed.
..Ron
I had a session of vinorelbine last Friday and another today.
I am still suffering from the low grade fevers, constant itch and fatigue. Perhaps things will improve once this second dose does it's job.
My haemoglobin and platelets are low so they gave me two units of whole blood today as well, That should perk me up a little over the weekend.
Sarah and I are planning a few days away next week so I'll be given a little extra blood mid-week to see me through to the week after. There is no chemo next week.
Last Thursday was the day they inserted the PICC line. It didn't go well.
I should have noticed that my right bicep, where the line was fitted, was very tight and swollen.
I didn't really think about it until the blood started pouring down my arm as I drove away from the hospital.
The line had leaked where it goes into the vein, filling the surrounding tissue with blood (a haematoma) and then ultimately pushing it's way out through the point where the line enters the arm.
I should have taken a picture it was a huge mess!
I returned to the day ward just as the team were leaving for the day. I became the centre of attention for a while, the nurses fussing over me, changing the dressing, only to have it leak again. Then one of the doctors suggested I be given another unit of platelets to help stop the bleeding. I didn't get home till quite late.
Today was much the same time-wise. Arrived at 8:30am and departed at 3:30pm. It all makes for a very long and tiring day.
I'm hoping for a relaxed weekend.. fingers crossed.
..Ron
Sunday, October 2, 2011
Treatment plan for next week and the dangers of paracetamol
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! :(
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! :(
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
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