Apologies to anyone who got a blog update suggesting I was back ill again... It appears as if last year in hospital I posted an update with a 2010 date instead of a 2009 one.... I blame the chemo (or just my general stupidity).... Anyway... Sorry!
Anyway just to let you know that one year on, everything is still fine... Last blood results a couple of months ago wre normal and am due another set of tests in January.
Am back to work full time, although am now taking advantage of all the holiday I accrued earlier in the year...!
In wish you all a merry Christmas and a happy New Year!
Ed
Friday 17 December 2010
Friday 7 May 2010
Latest bone marrow results
Just a very quick update to let you know that my latest bone marrow results were all good - I'm still MRD (minimum residual disease) negative which means I'm still in remission!
I am still at home waiting for my red and white blood cell counts to fully recover which the doctors say may take another month or so. During this time, I'll be going for bi-weekly blood tests to check for abnormally high blasts returning - fingers crossed they don't!
I am still at home waiting for my red and white blood cell counts to fully recover which the doctors say may take another month or so. During this time, I'll be going for bi-weekly blood tests to check for abnormally high blasts returning - fingers crossed they don't!
Monday 19 April 2010
Finished!
I 'checked out' of hospital last Wednesday night after my white blood counts reached 1.4, a sufficiently high level to allow me to leave the protective environment of the ward.
This is a great milestone in the treatment as it is hopefully the last time I am admitted to hospital - touch wood and all that again! Also, I convinced them to take my PICC line out - the tube that has been in one of my veins for the past 4.5 months and allows them to take blood out and pump chemicals in more easily. This has cheered me up immeasurably as I am now free and starting to feel a bit more normal. I can also take showers without having to wrap my arm in cling-film.
Have been at my family home for the past days and feeling reasonably ok. Getting tired very quickly which is to be expected for the foreseeable future and finding it difficult to concentrate on anything much. Have also got a bit of a cold which my white cells are fighting reasonably well, but combined with a low platelet count have resulted in some nose bleeds over the last couple of days. Yesterday's was quite bad so I went back to hospital for the afternoon to get some more platelets. Because my PICC line is now out, they had to put a temporary line in called a canulla; my veins aren't as good as they used to be so it took them 5 attempts to get it in and now I am left with 5 very unattractive bruises on both my arms. Oh well.
Back in hospital again this morning for routine blood test and to see the consultants. All going ok - counts are rising as they should and they are happy with my progress. Was reminded that my prognosis is still good, but only 50:50 which is what I knew already but always humbling to be reminded of it. If I do relapse then I will go down the bone marrow transplant route to offer me another chance.... let's hope it doesn't come to that!
On a brighter note, still feeling good in myself - am so pleased that I don't have any nausea or sickness like I did the last time I left hospital. This means that I'm eating very well, putting weight back on fast and slowly trying to return back to normal.
I have another bone marrow biopsy next Monday which will (a) hurt like hell and (b) check whether they can detect any cancer cells. Wish me luck!!
This is a great milestone in the treatment as it is hopefully the last time I am admitted to hospital - touch wood and all that again! Also, I convinced them to take my PICC line out - the tube that has been in one of my veins for the past 4.5 months and allows them to take blood out and pump chemicals in more easily. This has cheered me up immeasurably as I am now free and starting to feel a bit more normal. I can also take showers without having to wrap my arm in cling-film.
Have been at my family home for the past days and feeling reasonably ok. Getting tired very quickly which is to be expected for the foreseeable future and finding it difficult to concentrate on anything much. Have also got a bit of a cold which my white cells are fighting reasonably well, but combined with a low platelet count have resulted in some nose bleeds over the last couple of days. Yesterday's was quite bad so I went back to hospital for the afternoon to get some more platelets. Because my PICC line is now out, they had to put a temporary line in called a canulla; my veins aren't as good as they used to be so it took them 5 attempts to get it in and now I am left with 5 very unattractive bruises on both my arms. Oh well.
Back in hospital again this morning for routine blood test and to see the consultants. All going ok - counts are rising as they should and they are happy with my progress. Was reminded that my prognosis is still good, but only 50:50 which is what I knew already but always humbling to be reminded of it. If I do relapse then I will go down the bone marrow transplant route to offer me another chance.... let's hope it doesn't come to that!
On a brighter note, still feeling good in myself - am so pleased that I don't have any nausea or sickness like I did the last time I left hospital. This means that I'm eating very well, putting weight back on fast and slowly trying to return back to normal.
I have another bone marrow biopsy next Monday which will (a) hurt like hell and (b) check whether they can detect any cancer cells. Wish me luck!!
Thursday 8 April 2010
Sprint to the finish
I came back in hospital on Tuesday morning feeling exhausted which I put down to a low haemoglobin count. However, when my blood results came back I was already seriously neutropenic - 0.3; a drop from 10 just a couple of days before. My haemoglobin and platelets were also low.
Therefore, was rushed some units of blood and have gone back into 'neutropenic' living, where I go overboard to try and avoid picking up an infection.
Yesterday was a very difficult day due to a pain in a place most people don't want to know about. The Docs tried to give some pain control but nothing worked. Happily today it is a bit better, however, am still in some constant pain during the day. Hope this doesn't last too long as yesterday was pure agony.
I also spiked a temperature last night, so the usual hospital process kicked in - blood tests, urine tests, immediate antibiotics, etc. Temperature back to normal today so hopefully beat that one just as it started. Antibiotics will continue for a while still.
White blood count is 0.2 today; I'll be a very happy man when they start to rise as this will be the beginning of the recovery.
Therefore, was rushed some units of blood and have gone back into 'neutropenic' living, where I go overboard to try and avoid picking up an infection.
Yesterday was a very difficult day due to a pain in a place most people don't want to know about. The Docs tried to give some pain control but nothing worked. Happily today it is a bit better, however, am still in some constant pain during the day. Hope this doesn't last too long as yesterday was pure agony.
I also spiked a temperature last night, so the usual hospital process kicked in - blood tests, urine tests, immediate antibiotics, etc. Temperature back to normal today so hopefully beat that one just as it started. Antibiotics will continue for a while still.
White blood count is 0.2 today; I'll be a very happy man when they start to rise as this will be the beginning of the recovery.
Saturday 3 April 2010
Home for good behaviour!
Quick update - so far all is going well - no significant side effects and last night was my last dose of chemo - hopefully last EVER dose of chemo, assuming everything stays in check! Feeling pretty positive about that after 4 rounds over 4 months of chemo.... :)
Moreover, I have actually been allowed out of hospital for a couple of days as my white counts are still high and the Docs think it will be a few days still before the start to drop as a result of the chemo.
Therefore current plan is to go back to hospital on Tuesday morning at which point I'll spend another two weeks waiting for the counts to go down and up again!
All good so far!
Moreover, I have actually been allowed out of hospital for a couple of days as my white counts are still high and the Docs think it will be a few days still before the start to drop as a result of the chemo.
Therefore current plan is to go back to hospital on Tuesday morning at which point I'll spend another two weeks waiting for the counts to go down and up again!
All good so far!
Tuesday 30 March 2010
This could be it!
I came back into hospital yesterday after just over 3 weeks recovering at home. I'm back in a shared bay for the moment, but it's not very busy and the other "in-mates" appear very friendly. We all have different conditions which means it is genuinely interesting to hear each other's experiences without drawing too many comparisons to your own.
I was originally due to go back in a week ago, however, at the last minute it was delayed a week to give me another week to recover. In retrospect, I'm pretty glad that decision was made as I was about 70% recovered last week but feel more 90% this week. My only remaining symptoms are tiredness, dry feet and numbness in half my right hand. I suspect these three will continue for a while, so don't feel uncomfortable starting chemo with them.
The extra week also allowed me to eat some more as I had had some difficulty in the first week coming out from hospital. Everybody still says I look way thinner than I did (and BTW have virtually totally lost all my hair), but looking at the scales, I'm only a kilo or two off my original weight so am happy about that. Besides, if the nausea and sickness don't hit, I'll be back on the cooked breakfasts for a while :-)
In theory this will be the final round, so long as I don't relapse - fingers crossed, touch wood and all that. This round is called MidAC and, for those who are interested in the detail, consists of:
1. Mitoxantrone - given intravenously as an injection once a day for five days - A DRUG I HAVEN'T HAD BEFORE AND IS A FREAKY BRIGHT BLUE!! Here's a picture of me getting it:
2. Cytarabine - given intravenously as a two hour infusion twice a day for three days - A drug that I have had at various concentrations on each round to date.
Before you start your chemo you have to sign a consent form which highlights the side effects. The list is always the same, and the form gives no indication of how likely you are to get any particular symptom. However, everybody has assured me that this round is much easier than the previous round (called MACE).
What concerns me is that the Cytarabine in this round is 10 TIMES as strong as rounds 1 and 2, and 5 TIMES as strong as in MACE. When I questioned this to the Docs, I got a kind of unclear - "well, in spite of this we tend to find MidAC better tolerated than MACE" .... comforting indeed.
I'm left in pretty high spirits considering - can't get too worried about this stuff as I have no control in it and there are no other conceivable options, so lets just play it out. I'm also very much strengthened by the thought that this could/should be the last round - so 3-4 weeks in hospital then its done.
I'm currently having my 'day 2' of chemo injected and so far so good, no side effects to speak of, so hope this maintains during the rest of the course...
Thanks, as always, for all your support - your emails, texts, skype messages are very much appreciated - I may not always reply promptly, but be assured that I am reading them and will try to write to you over the coming weeks.
Love to all,
Ed
I was originally due to go back in a week ago, however, at the last minute it was delayed a week to give me another week to recover. In retrospect, I'm pretty glad that decision was made as I was about 70% recovered last week but feel more 90% this week. My only remaining symptoms are tiredness, dry feet and numbness in half my right hand. I suspect these three will continue for a while, so don't feel uncomfortable starting chemo with them.
The extra week also allowed me to eat some more as I had had some difficulty in the first week coming out from hospital. Everybody still says I look way thinner than I did (and BTW have virtually totally lost all my hair), but looking at the scales, I'm only a kilo or two off my original weight so am happy about that. Besides, if the nausea and sickness don't hit, I'll be back on the cooked breakfasts for a while :-)
In theory this will be the final round, so long as I don't relapse - fingers crossed, touch wood and all that. This round is called MidAC and, for those who are interested in the detail, consists of:
1. Mitoxantrone - given intravenously as an injection once a day for five days - A DRUG I HAVEN'T HAD BEFORE AND IS A FREAKY BRIGHT BLUE!! Here's a picture of me getting it:
2. Cytarabine - given intravenously as a two hour infusion twice a day for three days - A drug that I have had at various concentrations on each round to date.
Before you start your chemo you have to sign a consent form which highlights the side effects. The list is always the same, and the form gives no indication of how likely you are to get any particular symptom. However, everybody has assured me that this round is much easier than the previous round (called MACE).
What concerns me is that the Cytarabine in this round is 10 TIMES as strong as rounds 1 and 2, and 5 TIMES as strong as in MACE. When I questioned this to the Docs, I got a kind of unclear - "well, in spite of this we tend to find MidAC better tolerated than MACE" .... comforting indeed.
I'm left in pretty high spirits considering - can't get too worried about this stuff as I have no control in it and there are no other conceivable options, so lets just play it out. I'm also very much strengthened by the thought that this could/should be the last round - so 3-4 weeks in hospital then its done.
I'm currently having my 'day 2' of chemo injected and so far so good, no side effects to speak of, so hope this maintains during the rest of the course...
Thanks, as always, for all your support - your emails, texts, skype messages are very much appreciated - I may not always reply promptly, but be assured that I am reading them and will try to write to you over the coming weeks.
Love to all,
Ed
Friday 12 March 2010
Back home
I'm now back home; left hospital last Thursday and have been a bit up and down since leaving. It's great to be home, and the memories of round 3 are beginning to fade but I'm still left with some side effects and am tasked with building my strength and increasing my weight before round four starts.
When I left hospital, I actually felt pretty good - a bit unstable on my legs, but good appetite and everything running properly. However, after the weekend, I've started to feeling quite bad nausea which has affected my diet. It's also becoming a challenge to swallow the 33 odd tablets I have to take each day.... urgh!!
The only other things that are affecting me are a bizarre numbness in my right hand and weak muscles in my legs. Strangely, I don't find walking or stairs that difficult, however just standing up (eg queueing at the pharmacy ;-) ) is incredibly painful; like you've run a marathon and lactic acid is burning through your muscles (obviously, I've never run a marathon, so I'm just guessing, but lactic acid burn is something I'm familiar with at school cross country runs!).
Guess it will take some time to get back to normal - visiting hospital twice a week for the usual blood tests and the docs are saying positive things, so just need to 'give it time'!!
When I left hospital, I actually felt pretty good - a bit unstable on my legs, but good appetite and everything running properly. However, after the weekend, I've started to feeling quite bad nausea which has affected my diet. It's also becoming a challenge to swallow the 33 odd tablets I have to take each day.... urgh!!
The only other things that are affecting me are a bizarre numbness in my right hand and weak muscles in my legs. Strangely, I don't find walking or stairs that difficult, however just standing up (eg queueing at the pharmacy ;-) ) is incredibly painful; like you've run a marathon and lactic acid is burning through your muscles (obviously, I've never run a marathon, so I'm just guessing, but lactic acid burn is something I'm familiar with at school cross country runs!).
Guess it will take some time to get back to normal - visiting hospital twice a week for the usual blood tests and the docs are saying positive things, so just need to 'give it time'!!
Sunday 28 February 2010
One week on...
One week on and I feel definite improvements! My white counts have slowly climbed to 0.9 (as of yesterday), helped on my GCSF injections - growth factor injections that stimulate the bone marrow. Now my various symptoms are reducing down.
They took my stomach line out during the week and I'm also off oxygen which is a god-send.... after a while, the mask feels part of you and it's actually a strange feeling having my own face back! They've also stopped feeding me intravenously and I am back trying to eat my own food.
This is the only real problem I have left - the food tastes disgusting! Now in the past two rounds, I really didn't mind the food, so I think it is my taste buds which have been affected by the chemo process rather than the quality of their food (although they can't cook fish to save their lives .... "when it looks like rubber .... you've overcooked it!!!").
Things I like eating now - croissants, fruit salads, tomato soup
Things I don't like eating but force down - overcooked fish, mashed potato, jelly, milk shakes
So ... all in all, feeling better and can see an end in sight. A few more days of higher WBCs and hopefully my taste will return back to normal. Hopefully the cooks will also learn how to cook fish at some point soon ..... :-)
They took my stomach line out during the week and I'm also off oxygen which is a god-send.... after a while, the mask feels part of you and it's actually a strange feeling having my own face back! They've also stopped feeding me intravenously and I am back trying to eat my own food.
This is the only real problem I have left - the food tastes disgusting! Now in the past two rounds, I really didn't mind the food, so I think it is my taste buds which have been affected by the chemo process rather than the quality of their food (although they can't cook fish to save their lives .... "when it looks like rubber .... you've overcooked it!!!").
Things I like eating now - croissants, fruit salads, tomato soup
Things I don't like eating but force down - overcooked fish, mashed potato, jelly, milk shakes
So ... all in all, feeling better and can see an end in sight. A few more days of higher WBCs and hopefully my taste will return back to normal. Hopefully the cooks will also learn how to cook fish at some point soon ..... :-)
Sunday 21 February 2010
Mostly still feeling the same ...
Since Thursday things haven't changed much. But a quick summary - Am still having a lot of diarrhea, feeling bloated at all the time and need to use a mask to help me breathe. Also having another round of hair loss which I had had in round 1 but skipped entirely in round 2.....
here's a picture of me now:
feeling ok in myself though. Temperature is a bit of a pain - appears to keep peeking and troughing. Have had a temperature now for over 10 days! It also makes me incredibly thirsty and I'm not meant to be drinking (just sips, ice cubes and ice lollies).
My WBC jumped to 0.4 on Friday (from 0.1 the day before) which really gave me a a boost that they were going to recover quickly, but then on Saturday they dropped back to 0.2 and today, they are 0.3; therefore appears they may go up slower than we anticipated.
Anyway, that's where we are on Sunday! Hope my WBCs improve over the next couple of days and that fixes the other diarrhea and other issues rapidly!
here's a picture of me now:
feeling ok in myself though. Temperature is a bit of a pain - appears to keep peeking and troughing. Have had a temperature now for over 10 days! It also makes me incredibly thirsty and I'm not meant to be drinking (just sips, ice cubes and ice lollies).
My WBC jumped to 0.4 on Friday (from 0.1 the day before) which really gave me a a boost that they were going to recover quickly, but then on Saturday they dropped back to 0.2 and today, they are 0.3; therefore appears they may go up slower than we anticipated.
Anyway, that's where we are on Sunday! Hope my WBCs improve over the next couple of days and that fixes the other diarrhea and other issues rapidly!
Thursday 18 February 2010
12kgs in 3 days! What a weight plan!
My normal weight as been around 81-83 kgs since I first started in hospital.
After this round started, my weight quicky dropped around around 77/78 kgs as I stopped eating all food.
Today my weight is 91.3kg. 91.3!!!!!!!!! OMG.
that's like 14kgs put on over the past week!
Now my understanding for this is that this because of all the IV drips I have been receiving; most of which also include saline. This includes around 2.5lit per day for TPN (their IV feeding complex); all my antibiotics, all my antivirals - virtually all my medication is IV now.....
This causes your body to bloat and I think this is contributing to the breathing problems I've been having mainly over the last couple of days. I'm finding it really hard to breathe in deeply and end up hyperventilating with short breathes. We think this is because the additional weight is pushing on the diaphragm preventing a proper breath.
Therefore I should be taking a diuretic to help get the balance back in place - wonder what my weight will be tomorrow?!
Otherwise today has been similar to yesterday....
WBCs are still at 0.1 and haven't risen yet - am really waiting for this to happen as it should kickstart the recovery of all my other bits and pieces....
After this round started, my weight quicky dropped around around 77/78 kgs as I stopped eating all food.
Today my weight is 91.3kg. 91.3!!!!!!!!! OMG.
that's like 14kgs put on over the past week!
Now my understanding for this is that this because of all the IV drips I have been receiving; most of which also include saline. This includes around 2.5lit per day for TPN (their IV feeding complex); all my antibiotics, all my antivirals - virtually all my medication is IV now.....
This causes your body to bloat and I think this is contributing to the breathing problems I've been having mainly over the last couple of days. I'm finding it really hard to breathe in deeply and end up hyperventilating with short breathes. We think this is because the additional weight is pushing on the diaphragm preventing a proper breath.
Therefore I should be taking a diuretic to help get the balance back in place - wonder what my weight will be tomorrow?!
Otherwise today has been similar to yesterday....
WBCs are still at 0.1 and haven't risen yet - am really waiting for this to happen as it should kickstart the recovery of all my other bits and pieces....
Wednesday 17 February 2010
Walk
Just seen all the pictures up on www.walkfored.co.uk for the Richmond walk which all look great.
Thanks so much to Tony for organising it so efficiently and putting so much effort into the web site and stuff.
Thanks so much to everybody else who contributed - Can't believe how much money you raised!!!!!!! Am very appreciatve and moved.
THANK YOU ALL OF YOU!!!!
MACE is badddddd.....
Sorry for not posting for so long. Have had a pretty rough ride of it. Everything I wrote about the first two rounds of chemo might as well be ripped up and started again as this round has redefined everything for me.
All the way through the previous posts, i was 'touching wood' (for want of a phrase with less dodgy connotations) that things would stay manageable. My biggest concern entering round 3 was whether I'd get a private room or not!!
Well I didn't and got a shared room as I've already mentioned, but this has been the last of my problems. After about day 2 I started getting really really bad nausea. Even though I was on hte standard anti-nausea tablets (and ones which had worked previously); they just weren't doing anything. Anything would trigger it - smells (especially any ward smells), food, thoughts. Felt like I was a speed boat that was giving me sea-sickness that would never end! This was accompanied by sickness and diorrhea any I was finding that any food I was eating was coming up (or down) by the end of the day.
Therefore I stopped ordering meals soon and was surviving just on water (which incidentally was absolutely tasting fowl).
Doctor's were saying these were all standard MACE (my chemo regime) side effects and worked initially to control the nausea. It took about 4 days for it to be right, but I now wear a bag around my shoulder which constantly injects high dose anti-nauseating drugs into me. Very trendy, I think you will find - a winner at the pub on a Friday night!
Because by this time, I had also not eaten in several days. Therfore they then put me on a food bag which injects food directly into my veins continulous throughout the day. Funny thing is it is a white infusion so you think it is just milk but apparently it's special and goes directly into your blood stream.
By now then I was getting pretty wired up again and still having reasonable frequent sickness and diarrhea so they moved me to a single room one night last week. THat was a massive step forward as with these conditions, sharing a shared bathroom was just a little too gross.
During this time, my counts were still dropping and I went neutropenic obout a week ago. I also picked up an infection around the same time and my temperature has been fluctuating between 38 and 41'C......
I also had a stomach tube put in, where they insert a smallish tube up your nose, down your throat and into your stomach. That's one of the most unpleasant experiences to date!
I've had multiple xrays and a CT scan and lots of people prodding my stomach (which always makes it feel worse). The general conclusion is that this is MACE side effects, they suck, and you just need to ride the storm .....
I now get loaded with IV delights throughout the day and night as well which is fun ... all the pills i were taken have been replaced with their IV equivalents so that they get absorbed into the blood and there's no risk that I'll just vommit them up again.
I'm rereading this post and it doesn't make a lot of sense; apologies. I am finding if very hard to concentrate on anything particularly. I'm typing so slowly - those that know my normal typing speed will be appalled. I also can't spell but probably couldn't do that when i felt normal.
Because of this it is really making the days a challenge - watching TV does nothing for me at all. I fall asleep in the middle of doing anything; even writing texts or or whatever. THe easiest thing is to lay in bed and close your eyes whilst the nurses endlessly poor IVs into you.
The only end in site is when my white count recovers. It was 0.1 then went to 0.2 for a couple of days and now has gone back 0.1; therefore have no real idea when this would be, but doctors are hoping it could be Monday where the recovery begins. I have been promised that recovery will be rapid. And this is good because I am so looking forward to the having a diet coke with ice and drinking it without later throwing up!
I will write sooner next time
All the way through the previous posts, i was 'touching wood' (for want of a phrase with less dodgy connotations) that things would stay manageable. My biggest concern entering round 3 was whether I'd get a private room or not!!
Well I didn't and got a shared room as I've already mentioned, but this has been the last of my problems. After about day 2 I started getting really really bad nausea. Even though I was on hte standard anti-nausea tablets (and ones which had worked previously); they just weren't doing anything. Anything would trigger it - smells (especially any ward smells), food, thoughts. Felt like I was a speed boat that was giving me sea-sickness that would never end! This was accompanied by sickness and diorrhea any I was finding that any food I was eating was coming up (or down) by the end of the day.
Therefore I stopped ordering meals soon and was surviving just on water (which incidentally was absolutely tasting fowl).
Doctor's were saying these were all standard MACE (my chemo regime) side effects and worked initially to control the nausea. It took about 4 days for it to be right, but I now wear a bag around my shoulder which constantly injects high dose anti-nauseating drugs into me. Very trendy, I think you will find - a winner at the pub on a Friday night!
Because by this time, I had also not eaten in several days. Therfore they then put me on a food bag which injects food directly into my veins continulous throughout the day. Funny thing is it is a white infusion so you think it is just milk but apparently it's special and goes directly into your blood stream.
By now then I was getting pretty wired up again and still having reasonable frequent sickness and diarrhea so they moved me to a single room one night last week. THat was a massive step forward as with these conditions, sharing a shared bathroom was just a little too gross.
During this time, my counts were still dropping and I went neutropenic obout a week ago. I also picked up an infection around the same time and my temperature has been fluctuating between 38 and 41'C......
I also had a stomach tube put in, where they insert a smallish tube up your nose, down your throat and into your stomach. That's one of the most unpleasant experiences to date!
I've had multiple xrays and a CT scan and lots of people prodding my stomach (which always makes it feel worse). The general conclusion is that this is MACE side effects, they suck, and you just need to ride the storm .....
I now get loaded with IV delights throughout the day and night as well which is fun ... all the pills i were taken have been replaced with their IV equivalents so that they get absorbed into the blood and there's no risk that I'll just vommit them up again.
I'm rereading this post and it doesn't make a lot of sense; apologies. I am finding if very hard to concentrate on anything particularly. I'm typing so slowly - those that know my normal typing speed will be appalled. I also can't spell but probably couldn't do that when i felt normal.
Because of this it is really making the days a challenge - watching TV does nothing for me at all. I fall asleep in the middle of doing anything; even writing texts or or whatever. THe easiest thing is to lay in bed and close your eyes whilst the nurses endlessly poor IVs into you.
The only end in site is when my white count recovers. It was 0.1 then went to 0.2 for a couple of days and now has gone back 0.1; therefore have no real idea when this would be, but doctors are hoping it could be Monday where the recovery begins. I have been promised that recovery will be rapid. And this is good because I am so looking forward to the having a diet coke with ice and drinking it without later throwing up!
I will write sooner next time
Sunday 7 February 2010
Thank you
To everybody who went on the walk yesterday as well as anyone who donated to the drug fund, thank you from the bottom of my heart for your support, strength and encouragement. Love to you all...
Haven't written for the past couple of days as have been hit with sideeffects from the chemo as predicted - bad nausea, vomiting, fatigue and diorrhea today. Hopefully the effects will subside over the coming days as I am due my last 24 hour marathon of chemo tonight.
Will write more when I feel a bit better, but if you you have any
photos from the walk pls email them to me!!
Thanks again everybody!!!
Ed
Haven't written for the past couple of days as have been hit with sideeffects from the chemo as predicted - bad nausea, vomiting, fatigue and diorrhea today. Hopefully the effects will subside over the coming days as I am due my last 24 hour marathon of chemo tonight.
Will write more when I feel a bit better, but if you you have any
photos from the walk pls email them to me!!
Thanks again everybody!!!
Ed
Thursday 4 February 2010
Midway through day one
As per my previous post I was meant to go back into hospital on Tuesday.... I actually did end up going to hospital on Tuesday but by the time I had been 'processed' it was too late to receive my chemo so I went back home and came in properly yesterday.
This time I am, at least for the moment, in a shared ward. I was a bit apprehensive about this having been spoiled with a dedicated private room for the last two courses, however, it is better than I expected. The other 3 guys in the room are also young with various types of leukemia and are at various stages of treatment. They all seem amicable kind of guys!
There was a single computer to share between the ward, but a quick installation of a wireless router sorted out my internet connectivity ;-) We also each get a LCD TV hanging from our beds. That, plus being largely bed bound due to my effectively constant drip, makes the experience feel quite a lot like a very long flight in an airplane!
Started my chemos yesterday late afternoon after the treatment coordinator reemphasized all the various risks of this round; always a cheerful conversation! I started with a two hour infusion of Mylotarg, the much anticipated experimental drug then this followed with a one hour infusions of Amsacrine and Etoposide. Then I was put on a 20 hour drip of Cytarabine which ran over night and is just over half way through this morning. This will repeat (except for the Mylotarg) every day for 5 days by which point my counts will be dropping until I am neutropenic again. This should last for a week or so and then my counts will rise again and I should get leave again.
So far am feeling fine so hope I have avoided any infusion reactions - bit of a headache this morning but I suspect that's because I didn't sleep too well last night so am a bit tired. Still drinking a lot of water meaning frequent trips to the toilet which are a bit of a drama having to walk my permanently attached drip around with me.
Still feeling very positive about things; getting a negative MRD (minimal residue disease) result on round 2 has really allowed me to be optimistic that these two final rounds are more for 'safety' and just to hit anything that is left with a multitude of hardcore killing chemicals that each work in different ways to target leukemia with a full range of weapons.
Finally, a quick shout out to everybody to say thanks for your emails, texts and blog comments - sorry I haven't replied to too many emails whilst i was out on hospital, hope to get back to you over the next couple of days....
Also to all those doing the Richmond walk - thank you so much again for agreeing to do it and to everybody who has raised money for the Mylotarg I got yesterday - it is really appreciated! As I'm in hospital, I unfortunately won't be able to come to Richmond Park but will be thinking of you all and hope to see lots of photos!
Take care!
This time I am, at least for the moment, in a shared ward. I was a bit apprehensive about this having been spoiled with a dedicated private room for the last two courses, however, it is better than I expected. The other 3 guys in the room are also young with various types of leukemia and are at various stages of treatment. They all seem amicable kind of guys!
There was a single computer to share between the ward, but a quick installation of a wireless router sorted out my internet connectivity ;-) We also each get a LCD TV hanging from our beds. That, plus being largely bed bound due to my effectively constant drip, makes the experience feel quite a lot like a very long flight in an airplane!
Started my chemos yesterday late afternoon after the treatment coordinator reemphasized all the various risks of this round; always a cheerful conversation! I started with a two hour infusion of Mylotarg, the much anticipated experimental drug then this followed with a one hour infusions of Amsacrine and Etoposide. Then I was put on a 20 hour drip of Cytarabine which ran over night and is just over half way through this morning. This will repeat (except for the Mylotarg) every day for 5 days by which point my counts will be dropping until I am neutropenic again. This should last for a week or so and then my counts will rise again and I should get leave again.
So far am feeling fine so hope I have avoided any infusion reactions - bit of a headache this morning but I suspect that's because I didn't sleep too well last night so am a bit tired. Still drinking a lot of water meaning frequent trips to the toilet which are a bit of a drama having to walk my permanently attached drip around with me.
Still feeling very positive about things; getting a negative MRD (minimal residue disease) result on round 2 has really allowed me to be optimistic that these two final rounds are more for 'safety' and just to hit anything that is left with a multitude of hardcore killing chemicals that each work in different ways to target leukemia with a full range of weapons.
Finally, a quick shout out to everybody to say thanks for your emails, texts and blog comments - sorry I haven't replied to too many emails whilst i was out on hospital, hope to get back to you over the next couple of days....
Also to all those doing the Richmond walk - thank you so much again for agreeing to do it and to everybody who has raised money for the Mylotarg I got yesterday - it is really appreciated! As I'm in hospital, I unfortunately won't be able to come to Richmond Park but will be thinking of you all and hope to see lots of photos!
Take care!
Tuesday 2 February 2010
Round 3!
Today I'll be going back into hospital for round 3 of chemo. As it stands, there are no single rooms available so I'll be going into a shared bay of 4 beds. I'm also not sure if I'll have internet any longer so don't know if I can email or post to this blog regularly...... if the worst comes to the worst, I'll talk to you in 3 weeks!
I'll be getting MACE + Mylotarg this round which is a collection of four drugs:
1. Amsacrine
2. Cytarabine
3. Etoposide
4. Mylotarg
The Cytarabine is delivered through an IV drip for 22 hours per day for 5 days; the others are IV pushes or quicker IV drips.
Am hoping this round goes ok, but understand the side effects may be greater because of the different drugs. Also, am still worried about some of the side effects of Mylotarg but hope I don't get too seriously affected....
I'll post an article as soon as I know what's happening!
All the best,
Me
I'll be getting MACE + Mylotarg this round which is a collection of four drugs:
1. Amsacrine
2. Cytarabine
3. Etoposide
4. Mylotarg
The Cytarabine is delivered through an IV drip for 22 hours per day for 5 days; the others are IV pushes or quicker IV drips.
Am hoping this round goes ok, but understand the side effects may be greater because of the different drugs. Also, am still worried about some of the side effects of Mylotarg but hope I don't get too seriously affected....
I'll post an article as soon as I know what's happening!
All the best,
Me
Friday 29 January 2010
Round 2 Results Day!
Yesterday I got the results for my second round of chemo. Same deal as before, they analyse the bone marrow extracts taken on Monday using two methods - (1) under the microscope ('morphological') and (2) using a computer which scans for dyed antibodies that cling to leukemic cells ('flow cytology'). The microscope is a rough estimation and the flow cytology is much more accurate.
In summary - it looks like really good news!!:
At the end of the last round, my results were 2% for the morphological results which is classed as a remission but my flow cytology result was 1% which meant that 1 in 100 cells in my bone marrow still showed signs of leukemia.
This time, I am still in morphological remission but happily I am also now classed as negative for minimum residual disease (MRD) on the flow cytology result. I am still trying to understand exactly what this means as MRD is a relatively new concept. The doctors explained yesterday that this meant they could not find any cancer cells with an accuracy of 1 in 10,000 bone marrow blood cells.
At the most optimistic end of the spectrum, I could interpret this to mean that using the most sensitive tests available at the hospital they could not detect any cancer left in me! That is a lovely sentence to write.....
But ... I am also trying to remain cautious as there haven't been enough tests to understand how MRD directly impacts probability of relapse and therefore I am still as always, very scared of a relapse after my treatment finishes....
But with my glass half full, I regard this as another step forward and another test successfully passed so am v happy today!
I am still due to go back in to hospital on Monday, although this may slip to later in the week if a bed isn't available. The doctors re-iterated that this round may be a lot tougher than the previous rounds due to the new drugs and intensity so am feeling a little nervous! Hoping all will be fine! Fight, fight, fight!!!
In summary - it looks like really good news!!:
At the end of the last round, my results were 2% for the morphological results which is classed as a remission but my flow cytology result was 1% which meant that 1 in 100 cells in my bone marrow still showed signs of leukemia.
This time, I am still in morphological remission but happily I am also now classed as negative for minimum residual disease (MRD) on the flow cytology result. I am still trying to understand exactly what this means as MRD is a relatively new concept. The doctors explained yesterday that this meant they could not find any cancer cells with an accuracy of 1 in 10,000 bone marrow blood cells.
At the most optimistic end of the spectrum, I could interpret this to mean that using the most sensitive tests available at the hospital they could not detect any cancer left in me! That is a lovely sentence to write.....
But ... I am also trying to remain cautious as there haven't been enough tests to understand how MRD directly impacts probability of relapse and therefore I am still as always, very scared of a relapse after my treatment finishes....
But with my glass half full, I regard this as another step forward and another test successfully passed so am v happy today!
I am still due to go back in to hospital on Monday, although this may slip to later in the week if a bed isn't available. The doctors re-iterated that this round may be a lot tougher than the previous rounds due to the new drugs and intensity so am feeling a little nervous! Hoping all will be fine! Fight, fight, fight!!!
Tuesday 26 January 2010
Ouch!
So yesterday was bone marrow aspirate day again ..... pain, pain, pain! I've already written about this particular 'minor procedure' in a previous post so won't bore you with the details, but enough to say 'Ouch'.
Results are back on Thursday and am really hoping that they show less residual disease than last time (i.e. < 1%).
It's good to get back to normality this week - have been driving my car to visit friends and have been actively trying to go out to more restaurants and public places rather than confining myself to home.
Other than the pain in my back where the aspirate was done, I'm feeling very well at the moment; falling asleep quite a lot during the day but am feeling less and less tired as the days progress......
Next post on Thursday!
Results are back on Thursday and am really hoping that they show less residual disease than last time (i.e. < 1%).
It's good to get back to normality this week - have been driving my car to visit friends and have been actively trying to go out to more restaurants and public places rather than confining myself to home.
Other than the pain in my back where the aspirate was done, I'm feeling very well at the moment; falling asleep quite a lot during the day but am feeling less and less tired as the days progress......
Next post on Thursday!
Thursday 21 January 2010
Packing my bags and a big thank you!
So, yesterday my WBC ended up at 4-ish and today's is 5.3 so the Doctors are letting me home today :-)
This is great news as I was beginning to go stir-crazy confined to my hospital room.
I'll be out for 1-2 weeks before coming in again to start round 3 which is meant to be more intense than this round and introduces some new drugs.
I'll also have another bone marrow aspirate over the next week and then the nerve-racking wait for the results starts again ....
Moreover, now that there appears (at least according to google analytics) to be a reasonable readership of this blog, I wanted to say a huge thank you to everybody for their support, kindness and thoughts since this all began:
Thanks to my Mum, Dad and sister for my daily visits, cards and incredible strength in dealing with this. Thank you all for spoiling me rotten over Christmas and to my Mum and sister for cooking all my meals and paying such close attention to the 'what i can't eat list'!! Deb - thank you so much for my morning stars, daily cards and, of course, Project Snowflake!
Thanks to my friends and work colleagues for their emails, cards, and gifts which have kept me going and kept my spirits up. I'm, frankly, overwhelmed by your support so thank you. I still can't believe you got my an iPhone and a PSP which have become integral to my 'keeping not-bored' strategy. Plus, learning the iPhone SDK has kept my mind pretty stimulated....
Also, thank you so much to all those who organised, and are participating in, a sponsored walk round Richmond Park in early February to help raise funds for the Mylotarg treatment which I will now be getting in round 3. Again, this is beyond anything I expected and I am truly moved. I hope to still be out of hospital to watch the walk if not participate in some of it as well. You can read more about the walk at www.walkfored.co.uk. Of course, I'll be thinking of you all and hope the weather is ok!
Thanks finally to my girlfriend, Aeey, for keeping her beautiful smile throughout all of this and always telling me that everything is going to be ok. And making me actually believe it most of the time :) Love you darling!
Sorry if this sounds like an Oscar acceptance speech (well, it is the season), but want to make sure you know that the support you all have given is really appreciated and is helping me keep positive which should, itself, be helping my recovery, I hope....
I probably won't write again until the bone marrow aspirate so wish me luck with that!
Love to all,
Ed
This is great news as I was beginning to go stir-crazy confined to my hospital room.
I'll be out for 1-2 weeks before coming in again to start round 3 which is meant to be more intense than this round and introduces some new drugs.
I'll also have another bone marrow aspirate over the next week and then the nerve-racking wait for the results starts again ....
Moreover, now that there appears (at least according to google analytics) to be a reasonable readership of this blog, I wanted to say a huge thank you to everybody for their support, kindness and thoughts since this all began:
Thanks to my Mum, Dad and sister for my daily visits, cards and incredible strength in dealing with this. Thank you all for spoiling me rotten over Christmas and to my Mum and sister for cooking all my meals and paying such close attention to the 'what i can't eat list'!! Deb - thank you so much for my morning stars, daily cards and, of course, Project Snowflake!
Thanks to my friends and work colleagues for their emails, cards, and gifts which have kept me going and kept my spirits up. I'm, frankly, overwhelmed by your support so thank you. I still can't believe you got my an iPhone and a PSP which have become integral to my 'keeping not-bored' strategy. Plus, learning the iPhone SDK has kept my mind pretty stimulated....
Also, thank you so much to all those who organised, and are participating in, a sponsored walk round Richmond Park in early February to help raise funds for the Mylotarg treatment which I will now be getting in round 3. Again, this is beyond anything I expected and I am truly moved. I hope to still be out of hospital to watch the walk if not participate in some of it as well. You can read more about the walk at www.walkfored.co.uk. Of course, I'll be thinking of you all and hope the weather is ok!
Thanks finally to my girlfriend, Aeey, for keeping her beautiful smile throughout all of this and always telling me that everything is going to be ok. And making me actually believe it most of the time :) Love you darling!
Sorry if this sounds like an Oscar acceptance speech (well, it is the season), but want to make sure you know that the support you all have given is really appreciated and is helping me keep positive which should, itself, be helping my recovery, I hope....
I probably won't write again until the bone marrow aspirate so wish me luck with that!
Love to all,
Ed
Wednesday 20 January 2010
WBC going up?
So yesterday my white blood count rose to 1.2. Wasn't really expecting that this early, but if it goes up again today then that suggests that I've finished my neutropenic phase already and am on the mend again. That'll mean I get out of hospital soon! :) It also means that my lowest WBC point (the 'nadir' point) was 0.5 which is a bit higher than last time (0.3). Nobody seems to know whether this is significant or not.
Temperature stayed under control yesterday and over night although had some night sweats. Ultrasound of my lower stomach came back clear so no problems there either.
All in all, feeling quite strong at the moment and optimistic I may finish this round very soon!
Temperature stayed under control yesterday and over night although had some night sweats. Ultrasound of my lower stomach came back clear so no problems there either.
All in all, feeling quite strong at the moment and optimistic I may finish this round very soon!
Tuesday 19 January 2010
Running hot and cold
Yesterday was a reasonably busy day - had antibiotics for the fever, red blood cells, platelets and a chest X-Ray.
Feel better after the red blood cells; am considering becoming a vampire :-) Amazing how a couple of pints of blood really lifts your energy levels!
My platelets were down to 6 yesterday - a hell of a drop from the 600 when I came in to hospital. Think it's a combination of the chemo + the infection which caused them to nose dive in the past few days. However, fortunately haven't had any nose bleeds yet which occur quite frequently when platelets are this low.
Infection feels better this morning. Yesterday I continued to go through phases of shivering and shaking and then phases of feeling like I was in tropical heat and sweating through the bed clothes. Pain in lower stomach is still there but feels better. Am alternating registering a low-ish temperature (38.0-38.1) and an ok temperature (this morning was 37.1). Headache and cough are gone so think something's working somewhere!
In the end I didn't get any Mylotarg yesterday. To give a fuller background, it was supposed to be given over two weeks ago, however, due to an issue with my insurance company not covering experimental drugs (and also not allowing me to pay separately for experimental drugs without them pulling all their cover), I have had to switch back to NHS and then pay for the drug privately.
At the Marsden, this doesn't make any difference to me (other than the food comes from the NHS kitchen instead of the private kitchen!), however it required a lot of paperwork and nobody could get this finished in time. The consultant thinks that because I am so neutropenic now, giving Mylotarg at this time might extend that period too much. Therefore Mylotarg will now be given with course 3. I'm slightly pissed off about this because the process seems to have broken down and if it had been managed and forms chased more effectively, I could have had Mylotarg last week. Anyway, there is no evidence that Mylotarg is less effective in course 3 vs course 2 so hopefully there is no disadvantage to me.
The only thing that worries me is that AML15 published positive results for Mylotarg in course 1. AML15 did test Mylotarg in course 3 but haven't published the results yet, however, it interests me why AML17 decided to give Mylotarg in course 1 instead of mixing it up between course 1 and 3 in different trial arms. I wonder if it is because AML15 unofficially found it more effective in induction. However, I'm just guessing so can't get too upset about it. Still think it's better to get Mylotarg than not get Mylotarg and if we hadn't been through all this pain in round 2, we would have had to in round 3. This is me staying positive!
That's all for now - last night I didn't end up shivering or sweating too much so that's positive. Temperature this morning is ok although feeling a little hot. Hope the antibiotics continue to keep this under control...
Now Mylotarg is out of the frame for this round, I can more clearly see the end point of this course. I anticipate my counts dropping for the next 4-5 days and then beginning to increase again; therefore as long as everything goes to plan and my bone marrow starts kicking next week, I can imagine being out of hospital by next weekend! :)
Feel better after the red blood cells; am considering becoming a vampire :-) Amazing how a couple of pints of blood really lifts your energy levels!
My platelets were down to 6 yesterday - a hell of a drop from the 600 when I came in to hospital. Think it's a combination of the chemo + the infection which caused them to nose dive in the past few days. However, fortunately haven't had any nose bleeds yet which occur quite frequently when platelets are this low.
Infection feels better this morning. Yesterday I continued to go through phases of shivering and shaking and then phases of feeling like I was in tropical heat and sweating through the bed clothes. Pain in lower stomach is still there but feels better. Am alternating registering a low-ish temperature (38.0-38.1) and an ok temperature (this morning was 37.1). Headache and cough are gone so think something's working somewhere!
In the end I didn't get any Mylotarg yesterday. To give a fuller background, it was supposed to be given over two weeks ago, however, due to an issue with my insurance company not covering experimental drugs (and also not allowing me to pay separately for experimental drugs without them pulling all their cover), I have had to switch back to NHS and then pay for the drug privately.
At the Marsden, this doesn't make any difference to me (other than the food comes from the NHS kitchen instead of the private kitchen!), however it required a lot of paperwork and nobody could get this finished in time. The consultant thinks that because I am so neutropenic now, giving Mylotarg at this time might extend that period too much. Therefore Mylotarg will now be given with course 3. I'm slightly pissed off about this because the process seems to have broken down and if it had been managed and forms chased more effectively, I could have had Mylotarg last week. Anyway, there is no evidence that Mylotarg is less effective in course 3 vs course 2 so hopefully there is no disadvantage to me.
The only thing that worries me is that AML15 published positive results for Mylotarg in course 1. AML15 did test Mylotarg in course 3 but haven't published the results yet, however, it interests me why AML17 decided to give Mylotarg in course 1 instead of mixing it up between course 1 and 3 in different trial arms. I wonder if it is because AML15 unofficially found it more effective in induction. However, I'm just guessing so can't get too upset about it. Still think it's better to get Mylotarg than not get Mylotarg and if we hadn't been through all this pain in round 2, we would have had to in round 3. This is me staying positive!
That's all for now - last night I didn't end up shivering or sweating too much so that's positive. Temperature this morning is ok although feeling a little hot. Hope the antibiotics continue to keep this under control...
Now Mylotarg is out of the frame for this round, I can more clearly see the end point of this course. I anticipate my counts dropping for the next 4-5 days and then beginning to increase again; therefore as long as everything goes to plan and my bone marrow starts kicking next week, I can imagine being out of hospital by next weekend! :)
Monday 18 January 2010
It all changes so quickly...
So yesterday morning I started off with no symptoms, no temperature, nothing. By 7pm, I had developed a headache, a minor cough and a pain in my lower stomach accompanied by a temperature of 38.4.
As I've written before, as soon as you hit a temperature of above 38 a standard protocol kicks in. That is:
1. Blood is extracted from both lumens of the PICC line and cultured to check them for infection
2. Blood is extracted from the periphery blood and cultured to compare them against the blood in the PICC line and identify known infections
3. The Doctor is called
4. You are invariably immediately put on two IV antibiotics
5. A chest X-ray is scheduled
So by 11pm last night, I was on two new antibiotics. Paracetamol brought the temp down and helped the headache and the expectation is that the antibiotics kick in pretty quickly.
At 3am though I woke up cold and shivering. Flashbacks to the allergic reaction I suffered with a previous set of antibiotics set in, but this was different. I was only shivering when I was out of the bed; when I was buried in the bed clothes I felt cold but the shivering was minor. Called the nurse, and she gave me two extra blankets and a hot chocolate (best medicine!) which warmed me up ok and stopped the shivering.
Slept through the night and this morning feel better. The headache has gone, temperature is down to 37.4. Still have a pain in my lower stomach which if anything is slightly worse than yesterday but hoping this disappears today too.
One of the antibiotics was repeated this morning and I'll get it 2 more times today; the other antibiotic is an IV drip which I will get nightly.
Also today I am expecting to receive Mylotarg. Mylotarg is a new experimental drug that works in a different way to normal chemo. Normal chemo just blats any fast differentiating cell which is why it knocks out your immune system and your hair. In comparison, Mylotarg is a highly toxic cell killing drug combined with a antigen that binds with a protein called CD33 which is theoretically found only on leukemia cells. Therefore it delivers a bomb to leukemia cells and kills them by disrupting their DNA. Cool huh? Of course, the down side is that it's new, experimental and there is an argument that it is not as specific as it claims. Specifically, it is known to also target liver cells which can lead to liver problems in extreme circumstances.
Most of our knowledge of Mylotarg comes from a trial from Birmingham university called AML-15 which was started around July 2007 and closed around April 2009. AML-15 randomised AML suffers into receiving Mylotarg during induction chemo (first/second round of chemo), consolidation chemo (third/fourth round of chemo) or not at all. Only preliminary results from the induction arm are available but showed that there was reduced relapse of AML leukemia in patients who took Mylotarg (37%) vs those who did not (52%) after 3 years. More importantly, there was a significantly greater proportion of deaths through chemo in the Mylotarg arm. This suggests that Mylotarg significantly reduced relapse without increased toxicity. The success of Mylotarg has meant that in the current AML trial being run in the NHS (AML-17), Mylotarg will be given to 80% of patients within the trial.
So am planning to get Mylotarg today at 3mg/m2 concentration (the lowest level tested, but the same level in AML-15). Am a little nervous of the risks - quite a lot of people get reactions afterwards like fever, shaking (used to these though!), and of course there is the liver risk to worry about too. But worry doesn't server much purpose and I would be more kicking myself if in the future I had a relapse and I hadn't tried Mylotarg - I would always be thinking 'would it have made a difference?!'
That's all for now - hope everybody is well and will write later re infection + how the Mylotarg administration went.
As I've written before, as soon as you hit a temperature of above 38 a standard protocol kicks in. That is:
1. Blood is extracted from both lumens of the PICC line and cultured to check them for infection
2. Blood is extracted from the periphery blood and cultured to compare them against the blood in the PICC line and identify known infections
3. The Doctor is called
4. You are invariably immediately put on two IV antibiotics
5. A chest X-ray is scheduled
So by 11pm last night, I was on two new antibiotics. Paracetamol brought the temp down and helped the headache and the expectation is that the antibiotics kick in pretty quickly.
At 3am though I woke up cold and shivering. Flashbacks to the allergic reaction I suffered with a previous set of antibiotics set in, but this was different. I was only shivering when I was out of the bed; when I was buried in the bed clothes I felt cold but the shivering was minor. Called the nurse, and she gave me two extra blankets and a hot chocolate (best medicine!) which warmed me up ok and stopped the shivering.
Slept through the night and this morning feel better. The headache has gone, temperature is down to 37.4. Still have a pain in my lower stomach which if anything is slightly worse than yesterday but hoping this disappears today too.
One of the antibiotics was repeated this morning and I'll get it 2 more times today; the other antibiotic is an IV drip which I will get nightly.
Also today I am expecting to receive Mylotarg. Mylotarg is a new experimental drug that works in a different way to normal chemo. Normal chemo just blats any fast differentiating cell which is why it knocks out your immune system and your hair. In comparison, Mylotarg is a highly toxic cell killing drug combined with a antigen that binds with a protein called CD33 which is theoretically found only on leukemia cells. Therefore it delivers a bomb to leukemia cells and kills them by disrupting their DNA. Cool huh? Of course, the down side is that it's new, experimental and there is an argument that it is not as specific as it claims. Specifically, it is known to also target liver cells which can lead to liver problems in extreme circumstances.
Most of our knowledge of Mylotarg comes from a trial from Birmingham university called AML-15 which was started around July 2007 and closed around April 2009. AML-15 randomised AML suffers into receiving Mylotarg during induction chemo (first/second round of chemo), consolidation chemo (third/fourth round of chemo) or not at all. Only preliminary results from the induction arm are available but showed that there was reduced relapse of AML leukemia in patients who took Mylotarg (37%) vs those who did not (52%) after 3 years. More importantly, there was a significantly greater proportion of deaths through chemo in the Mylotarg arm. This suggests that Mylotarg significantly reduced relapse without increased toxicity. The success of Mylotarg has meant that in the current AML trial being run in the NHS (AML-17), Mylotarg will be given to 80% of patients within the trial.
So am planning to get Mylotarg today at 3mg/m2 concentration (the lowest level tested, but the same level in AML-15). Am a little nervous of the risks - quite a lot of people get reactions afterwards like fever, shaking (used to these though!), and of course there is the liver risk to worry about too. But worry doesn't server much purpose and I would be more kicking myself if in the future I had a relapse and I hadn't tried Mylotarg - I would always be thinking 'would it have made a difference?!'
That's all for now - hope everybody is well and will write later re infection + how the Mylotarg administration went.
Saturday 16 January 2010
Neutropenic again
So just a quick note to mark that I am 'neutropenic' again today. This means that I have few if any white blood cells and therefore am a defenseless creature just waiting for bacteria, viruses or fungi to attack - my white blood count is 0.8 so I'm only just neutropenic but this will drop over the following days. Haemoglobin and platelets are 8.8 and 61 respectively.
Back into paranoid mode of washing my hands with alcohol all the time and just trying to be extra-specially careful of trying not to pick up an infection. I know that it's almost inevitable that I do, but it's worth being just that little bit more careful than normal to minimise the risks.
Have a bit of back pain today; suspect it is sitting in the chair all day long rather than anything more serious. Hope this goes away by itself - don't think it's related to blood counts or the chemo.
I can, however, feel my haemoglobin being quite low - couldn't muster the energy to do my exercises today as feel out of breath quite easily. Suspect I'll have a red blood cell transfusion over the next couple of days; not sure how the timing of that will work with receiving Mylotarg, which is still scheduled for Monday.
All in all - so far so good this round (touch wood!). Let's try not to spike!!!
Back into paranoid mode of washing my hands with alcohol all the time and just trying to be extra-specially careful of trying not to pick up an infection. I know that it's almost inevitable that I do, but it's worth being just that little bit more careful than normal to minimise the risks.
Have a bit of back pain today; suspect it is sitting in the chair all day long rather than anything more serious. Hope this goes away by itself - don't think it's related to blood counts or the chemo.
I can, however, feel my haemoglobin being quite low - couldn't muster the energy to do my exercises today as feel out of breath quite easily. Suspect I'll have a red blood cell transfusion over the next couple of days; not sure how the timing of that will work with receiving Mylotarg, which is still scheduled for Monday.
All in all - so far so good this round (touch wood!). Let's try not to spike!!!
Monday 4 January 2010
Round 2! Ding Ding!
Am back in to hospital today to start round 2 of my chemotherapy. I have the room next to my original room and I am fortunate enough that this one has a 32" LCD TV. So am very happy with how things have turned out so far!
This round of chemo is very similar to the last round - this one is called DA 3+8. The same drugs are used but for slightly less duration. I get Daunorubicin on days 1, 3 and 5 and Cytarabine for 8 days. I'm hoping I get away without significant side effects like the last time. But I'm not trying to be complacent. TOUCH WOOD!!
I found out today the other more detailed version of the bone marrow results - this is based on flow cytology and is a much more detailed analysis of the leukemia cells in the bone marrow. My results were 1% leukemic cells left, which is apparently an excellent result but still shows a small amount of leukemic cells left which hopefully the next consolidation rounds of chemo should remove.
Tonight I will get my first chemo, and hope it goes much like the last round....!
(written retrospectively)
This round of chemo is very similar to the last round - this one is called DA 3+8. The same drugs are used but for slightly less duration. I get Daunorubicin on days 1, 3 and 5 and Cytarabine for 8 days. I'm hoping I get away without significant side effects like the last time. But I'm not trying to be complacent. TOUCH WOOD!!
I found out today the other more detailed version of the bone marrow results - this is based on flow cytology and is a much more detailed analysis of the leukemia cells in the bone marrow. My results were 1% leukemic cells left, which is apparently an excellent result but still shows a small amount of leukemic cells left which hopefully the next consolidation rounds of chemo should remove.
Tonight I will get my first chemo, and hope it goes much like the last round....!
(written retrospectively)
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