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!!!
Friday 29 January 2010
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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