Let's see.. where am I at right now...
Absolutely no cough, not even a tickle now for several days.
No back aches.
No asthma.
Temperature is rock steady at 36.5 (dead centre of the normal range)
No night sweats.
No fatigue, and energy levels normal.
Walked for an hour last night and felt fine.
I've not felt this well in a very long time.
So it looks like the IVE chemo has really knocked the Hodgkin's for a six.
This is exactly what we wanted. Too reduce the cancer burden right down so that the BEAM high dose chemo in two weeks time has less to do and more chance of success.
Treatment starts on Feb 12th with the insertion of a PICC line into my arm for easy access when giving chemo and taking bloods. It's much better than the std IV line into a vein that I've had in the past.
Chemo will be completed on the 17th (yuk! six days of continuous IV chemotherapy) and my stem cells will be reintroduced 24 hours later. They expect that barring any problems I can go home at that point (18th).
From there it will take 3-4 weeks for the stem cells to engraft and rebuild my bone marrow. My blood counts should follow closely behind.
And as always there's a motorsport focus for me.. Mount Victoria Hillclimb is scheduled for March 15th and It is my goal to be well enough to compete and defend my title.
Thursday, January 29, 2009
Wednesday, January 28, 2009
STEM CELLS ARE ALL GOOD
Great news! The stem cells that have travelled across the world to Germany, been kept in a garden shed and had liquid nitrogen poured all over them when they were stored in a "dry" shipper, then travelled all the way back again, have survived and are perfectly viable for transplant.
This is really, really good news in light of the fact that we weren't able to mobilise any more new cells. Had the old cells been damaged in any way, I'd have been in deep deep trouble, with only an allogeneic transplant as an option. (someone else's stem cells).
Over the last 24 hours, since being told we could not harvest new cells, I have broken out into a cold sweat every time my mind wandered onto the subject. It terrified me thinking about the situation, and I can tell you there's not much that scares me.
Anyway that's great news and leaves me still on track for the transplant starting 12th Feb.
Healthwise, I feel good but weak from spending seven days in bed. I'm making a concerted effort to eat as much as I can (I'm just having my third breakfast now) and tonight Sarah and I will go for a walk. The first of many as I rebuild my stamina.
Cheers! ...Ron
This is really, really good news in light of the fact that we weren't able to mobilise any more new cells. Had the old cells been damaged in any way, I'd have been in deep deep trouble, with only an allogeneic transplant as an option. (someone else's stem cells).
Over the last 24 hours, since being told we could not harvest new cells, I have broken out into a cold sweat every time my mind wandered onto the subject. It terrified me thinking about the situation, and I can tell you there's not much that scares me.
Anyway that's great news and leaves me still on track for the transplant starting 12th Feb.
Healthwise, I feel good but weak from spending seven days in bed. I'm making a concerted effort to eat as much as I can (I'm just having my third breakfast now) and tonight Sarah and I will go for a walk. The first of many as I rebuild my stamina.
Cheers! ...Ron
Tuesday, January 27, 2009
Failure to mobilise.
To say I'm a bit pissed off and frustrated would be an understatement.
My blood counts today are excellent as far as supporting life is concerned, however the CD34 stem cell count is pathetic. As a result the doctors have decided to give up on harvesting a new batch of stem cells and go with the ones already in storage.
Personally I'd have waited another couple of days. However Dr D'Souza tells me that he is totally convinced I won't mobilise any new stem cells.
This afternoon I return to the hospital for another unit of platelets and then my vas-cath line will be removed from my neck. I've never given up on anything in my entire life and to have someone else pull the plug is a big pill to swallow.
Treatment-wise it's still full speed ahead. The old stem cells will be fine, it will just take a little longer for them to engraft because of the slightly reduced size of that harvest too. It's about 3/4's of what would normally be used for a transplant. The end result is I will be in the 'at risk' period for longer, perhaps as much as an extra week.
It should all happen in the next couple of weeks. Meantime I will be getting as much exercise as I can and eating heaps to put some weight back on. I only weigh 70kg and I'll loose a heap more during the high dose, so it's important to try and cram some more weight on now. My ulcers have almost completely healed now, so I can eat proper food again!. Yay! No more soups.
Right! must go and get this line removed etc. (at least I will be able to sleep on my right side again)
My blood counts today are excellent as far as supporting life is concerned, however the CD34 stem cell count is pathetic. As a result the doctors have decided to give up on harvesting a new batch of stem cells and go with the ones already in storage.
Personally I'd have waited another couple of days. However Dr D'Souza tells me that he is totally convinced I won't mobilise any new stem cells.
This afternoon I return to the hospital for another unit of platelets and then my vas-cath line will be removed from my neck. I've never given up on anything in my entire life and to have someone else pull the plug is a big pill to swallow.
Treatment-wise it's still full speed ahead. The old stem cells will be fine, it will just take a little longer for them to engraft because of the slightly reduced size of that harvest too. It's about 3/4's of what would normally be used for a transplant. The end result is I will be in the 'at risk' period for longer, perhaps as much as an extra week.
It should all happen in the next couple of weeks. Meantime I will be getting as much exercise as I can and eating heaps to put some weight back on. I only weigh 70kg and I'll loose a heap more during the high dose, so it's important to try and cram some more weight on now. My ulcers have almost completely healed now, so I can eat proper food again!. Yay! No more soups.
Right! must go and get this line removed etc. (at least I will be able to sleep on my right side again)
Monday, January 26, 2009
Waiting for the plan...
I've managed to find out my blood counts, they are really good news!
My WBC has gone up 150% overnight to 1.83 so they are good for harvesting.
My platelets have dropped to 13% which is actually good because they were 14 yesterday and have only dropped a small mount. This tells me that I'm starting to produce my own as the count should have halved overnight and it hasn't.
The next area is monocytes. Until yesterday I had never had to factor these into anything.
But Dr D'Souza told me yesterday that they were very low and this concerned him as they were a factor in determining the likelihood of getting a good stem cell harvest. I didn't memorise the figure (I'll update the figure later) but it's gone from almost nothing to being completely normal in the last 24 hours. A truly incredible increase.
Things are happening really fast now. I just wish someone would tell me the plan!
I've got the transfusions I asked for. Two units of whole blood and one of platelets.
The nurse asked if I wanted them after lunch. I said I want them now.
OK: Catherine Wood just came in and told me the plan. The stem cell (CD34) count today is 2 we need it to be 20. So no harvest today. She agrees that with the big increases in the other counts overnight that it's still looking good. I asked how relevant the monocyte count was to the CD34 stem cell count and she explained that the two were closely tied and that the increase in the monocyte count was a very positive sign.
I'm free to go home today and return tomorrow for a blood test and possible harvesting.. yay!
My WBC has gone up 150% overnight to 1.83 so they are good for harvesting.
My platelets have dropped to 13% which is actually good because they were 14 yesterday and have only dropped a small mount. This tells me that I'm starting to produce my own as the count should have halved overnight and it hasn't.
The next area is monocytes. Until yesterday I had never had to factor these into anything.
But Dr D'Souza told me yesterday that they were very low and this concerned him as they were a factor in determining the likelihood of getting a good stem cell harvest. I didn't memorise the figure (I'll update the figure later) but it's gone from almost nothing to being completely normal in the last 24 hours. A truly incredible increase.
Things are happening really fast now. I just wish someone would tell me the plan!
I've got the transfusions I asked for. Two units of whole blood and one of platelets.
The nurse asked if I wanted them after lunch. I said I want them now.
OK: Catherine Wood just came in and told me the plan. The stem cell (CD34) count today is 2 we need it to be 20. So no harvest today. She agrees that with the big increases in the other counts overnight that it's still looking good. I asked how relevant the monocyte count was to the CD34 stem cell count and she explained that the two were closely tied and that the increase in the monocyte count was a very positive sign.
I'm free to go home today and return tomorrow for a blood test and possible harvesting.. yay!
Power plays and mind games..
It's 9:30am Monday morning and despite having my blood counts taken at 5:40am, I still have no word on whether we are harvesting today or not. Even my actual blood counts seem to be a mystery even to the team of doctors that just visited me.
I must tell you about that visit as it was a priceless moment.
A team of four doctors entered my room led by the haematologist I do not like. The other three consisted of a more junior doctor and two in training. The very first thing out of the Haematologists mouth was "It doesn't look like you are going to mobilise, it should have happened days ago". That was it I had had enough of this negative, chinless, weak kneed twit!
I had two options, humiliate him with a few well chosen (and prepared words) or take control of the situation and steal what little authority this clown has, right in front of his peers. I chose the later.
I pointed out that the previous poor harvests were without IVE priming and that we were right on schedule for a good harvest. I asked him what today's counts were. He did not know.
I said we needed to look at my haemoglobin count as I was suffering extreme fatigue.
I said we needed to transfuse platelets today. He smirked and said "Oh why is that".
I replied that with a count of only 14 yesterday and steadily dropping we were probably looking at a figure of around 6-8 today. He instructed one of the juniors to note that down. He obviously hadn't read any of my medical notes from over the weekend before blundering into my room (read "Lions Den") completely uninformed and without any ammunition. Perfect!
I said my mouth ulcers had all but healed in the last 48 hours and that this was a good indication my white cells were starting to rally.
I said we could discontinue the anti-fungal drug now that the IV antibiotics had been stopped and that I also required a prescription for the Augmentin tablets that would need to be continued after I left.
It was fun, he had slowly moved from my bedside and worked his way towards the door as I gave him _my_ instructions .
Anxious to get away, He said "that seemed to cover everything" and I said "yes I think that's all". Deliberately having the last word and releasing him and his team from my room.
Aaah the power.. hehe.. and all done while I lay down (but importantly fully dressed and on the bed, not in it) and they stood.
Revenge can be sweet, and it's a lot more fun when it's done without the guy having any idea what it was that just happened, but for some reason he's feeling really small right now.
That was fun!. ...Teach him to be negative and patronising. (and nearly kill me, see previous posts)
OK, power-plays aside, I'm still waiting for a word on harvesting.. Shall post as soon as I know.
..Ron
I must tell you about that visit as it was a priceless moment.
A team of four doctors entered my room led by the haematologist I do not like. The other three consisted of a more junior doctor and two in training. The very first thing out of the Haematologists mouth was "It doesn't look like you are going to mobilise, it should have happened days ago". That was it I had had enough of this negative, chinless, weak kneed twit!
I had two options, humiliate him with a few well chosen (and prepared words) or take control of the situation and steal what little authority this clown has, right in front of his peers. I chose the later.
I pointed out that the previous poor harvests were without IVE priming and that we were right on schedule for a good harvest. I asked him what today's counts were. He did not know.
I said we needed to look at my haemoglobin count as I was suffering extreme fatigue.
I said we needed to transfuse platelets today. He smirked and said "Oh why is that".
I replied that with a count of only 14 yesterday and steadily dropping we were probably looking at a figure of around 6-8 today. He instructed one of the juniors to note that down. He obviously hadn't read any of my medical notes from over the weekend before blundering into my room (read "Lions Den") completely uninformed and without any ammunition. Perfect!
I said my mouth ulcers had all but healed in the last 48 hours and that this was a good indication my white cells were starting to rally.
I said we could discontinue the anti-fungal drug now that the IV antibiotics had been stopped and that I also required a prescription for the Augmentin tablets that would need to be continued after I left.
It was fun, he had slowly moved from my bedside and worked his way towards the door as I gave him _my_ instructions .
Anxious to get away, He said "that seemed to cover everything" and I said "yes I think that's all". Deliberately having the last word and releasing him and his team from my room.
Aaah the power.. hehe.. and all done while I lay down (but importantly fully dressed and on the bed, not in it) and they stood.
Revenge can be sweet, and it's a lot more fun when it's done without the guy having any idea what it was that just happened, but for some reason he's feeling really small right now.
That was fun!. ...Teach him to be negative and patronising. (and nearly kill me, see previous posts)
OK, power-plays aside, I'm still waiting for a word on harvesting.. Shall post as soon as I know.
..Ron
Sunday, January 25, 2009
The Iceman cometh..
My WBC doubled overnight to 0.83 not quite high enough to start harvesting stem cells. It's good to see that my marrow is responding, but a little frustrating that I'm stuck in this place for another day or two yet. Tomorrow they should be around 1.6 if the current pattern of doubling each day holds. That's what has happened in the past. It's an exponential thing, taking time as we wait around for the smaller counts to start building decent sized numbers.
Apparently my temperature last night was 35.1 . I've never recorded a temperature that low in my life, but apparently that's a common reading to have in this ward.
One good thing about having a blazing fever of 39 for most of last week is that it actually helps kill cancer cells. That's probably not something the doctors here take into account. But it's a well documented fact that cancer cells are killed by high body temperatures. Obviously not all are killed, but hey ..anything that gives an edge!
On a totally different subject. The Internet connections I have are as bad as each other. First is Vodafone 3G (Vodem card in my laptop) it's pathetically slow and extremely intermittent. It's a far cry from what they show in their television advertising promoting 3G mobile internet. The second internet connection option I have is Cafenet wireless. I got perfect reception from them when I was here two weeks ago having chemo, but that was when I was on the other side of the building. I purchased heaps of pre-paid internet and now I can't use it. I'm not too upset though as it was a fluke that I managed to connect to it anyway. The nearest hotspot for them is down in Riddiford street, That's a huge distance!,
Anyway the point I was going to make is that even in this high tech world we live in, you can't even get decent internet is a hospital in the middle of our capital city. Perhaps when the new hospital opens... (I'm not planning on coming back to find out)
While typing the above I've had two visits.. one from Doctor D'Souza who confirmed that I'm still too low to harvest. Even he seems a bit less upbeat than yesterday, saying that we still have the stem cells from the previous harvest (The ones that did the round trip to Germany). I suggested that even if we had a poor harvest we could add that to the previous total and have a really good total for transfusion. I then added that I'm sure we will be fine tomorrow and get a great harvest. He agreed.
I go home tomorrow regardless of whether we harvest or not as I can return for that no problem.
OK, This is just crazy.. The nurse just took my temperature and it's now 34.9!. At this rate I'll be the Iceman in a couple of weeks! (The nurse seemed completely unconcerned by the reading)
Apparently my temperature last night was 35.1 . I've never recorded a temperature that low in my life, but apparently that's a common reading to have in this ward.
One good thing about having a blazing fever of 39 for most of last week is that it actually helps kill cancer cells. That's probably not something the doctors here take into account. But it's a well documented fact that cancer cells are killed by high body temperatures. Obviously not all are killed, but hey ..anything that gives an edge!
On a totally different subject. The Internet connections I have are as bad as each other. First is Vodafone 3G (Vodem card in my laptop) it's pathetically slow and extremely intermittent. It's a far cry from what they show in their television advertising promoting 3G mobile internet. The second internet connection option I have is Cafenet wireless. I got perfect reception from them when I was here two weeks ago having chemo, but that was when I was on the other side of the building. I purchased heaps of pre-paid internet and now I can't use it. I'm not too upset though as it was a fluke that I managed to connect to it anyway. The nearest hotspot for them is down in Riddiford street, That's a huge distance!,
Anyway the point I was going to make is that even in this high tech world we live in, you can't even get decent internet is a hospital in the middle of our capital city. Perhaps when the new hospital opens... (I'm not planning on coming back to find out)
While typing the above I've had two visits.. one from Doctor D'Souza who confirmed that I'm still too low to harvest. Even he seems a bit less upbeat than yesterday, saying that we still have the stem cells from the previous harvest (The ones that did the round trip to Germany). I suggested that even if we had a poor harvest we could add that to the previous total and have a really good total for transfusion. I then added that I'm sure we will be fine tomorrow and get a great harvest. He agreed.
I go home tomorrow regardless of whether we harvest or not as I can return for that no problem.
OK, This is just crazy.. The nurse just took my temperature and it's now 34.9!. At this rate I'll be the Iceman in a couple of weeks! (The nurse seemed completely unconcerned by the reading)
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