Although I wrote in early December that it would probably be my last post of 2012, this is my second post since, but I received some good news this morning that must be recorded here.
The hospital rang to say that the results of the additional chimerism test they did on the 6th have arrived ... and I am now 100% donor. None of my original immune system remains, as far as the tests can show, meaning that the last few of my original T-cells that showed up three weeks ago have been killed! I have been waiting for this day for a year, pretty much since they did the second chimerism test and decided I needed treatment with mature lymphocytes from my brother.
It means that the transplant has been as successful as it could be. It is as close to a cure that I can get, and it is the perfect Christmas present.
I would like to say a very special thank you to Harry, to all the staff at UCH, and to all of you for your support. Happy Christmas!
Monday 24 December 2012
Wednesday 19 December 2012
Immunisation
Today is a milestone on my journey - I have begun my immunisation program.
I remember very clearly during the week before my transplant the doctor telling me all about it, and what will happen. He told me that after the transplant I would have the immune system of a baby, and 18 months after the transplant I would be given all of the normal infant vaccines. I remember thinking that 18 months was a lifetime away ...
... and the day has arrived! Today I got 3 jabs (diphtheria, polio, tetanus, and a few others). Some require repeated doses, over the next 3 months. They do not give me MMR ("live" vaccines are contraindicated).
I remember very clearly during the week before my transplant the doctor telling me all about it, and what will happen. He told me that after the transplant I would have the immune system of a baby, and 18 months after the transplant I would be given all of the normal infant vaccines. I remember thinking that 18 months was a lifetime away ...
... and the day has arrived! Today I got 3 jabs (diphtheria, polio, tetanus, and a few others). Some require repeated doses, over the next 3 months. They do not give me MMR ("live" vaccines are contraindicated).
Thursday 6 December 2012
Host T-cells refuse to die!
The results from last chimerism test show that there is still a small residual level of my original host T-cells (white blood cells). Today at the clinic they took blood for a repeat test, in the hope that the previous DLI (donor lymphocyte infusion) is still working, and these last few blighters will be killed off.
As I have remarked before, the chimerism test is only accurate to a certain level, so even if the test is negative it does not mean that I have no residual T-cells, just that the test cannot detect them - in the case of a negative test there is some uncertainty. However, since the test is showing a small positive, there is absolute certainty that I still have some host T-cells, and so they will treat me with another DLI in the new year if this latest test still shows positive. The only risk of another DLI is that I will get GVH (graft-versus-host disease), but since I have had hardly any from the previous treatments, it is unlikely that I will get bad GVH from another treatment, given that the cells are all from the same batch taken from my brother last February (deep frozen).
As I wrote last time, I will now start a series of vaccinations and boosters similar to the ones given to children. Interestingly, this does not include MMR, which they do not give to adults on the grounds that the chance of getting any of them is low, and the possible risks are not worth it.
In the hospital, someone has been watching too much Star Trek, and all the nurses now have colour-coded uniforms! Sadly, not quite as bold as the Trekkie oranges, reds and blues, but limited to piping around the sleeves and collars of their blue jackets.
I suspect this will be my last post of 2012, so I wish you all seasons greetings, and a healthy new year.
As I have remarked before, the chimerism test is only accurate to a certain level, so even if the test is negative it does not mean that I have no residual T-cells, just that the test cannot detect them - in the case of a negative test there is some uncertainty. However, since the test is showing a small positive, there is absolute certainty that I still have some host T-cells, and so they will treat me with another DLI in the new year if this latest test still shows positive. The only risk of another DLI is that I will get GVH (graft-versus-host disease), but since I have had hardly any from the previous treatments, it is unlikely that I will get bad GVH from another treatment, given that the cells are all from the same batch taken from my brother last February (deep frozen).
As I wrote last time, I will now start a series of vaccinations and boosters similar to the ones given to children. Interestingly, this does not include MMR, which they do not give to adults on the grounds that the chance of getting any of them is low, and the possible risks are not worth it.
In the hospital, someone has been watching too much Star Trek, and all the nurses now have colour-coded uniforms! Sadly, not quite as bold as the Trekkie oranges, reds and blues, but limited to piping around the sleeves and collars of their blue jackets.
I suspect this will be my last post of 2012, so I wish you all seasons greetings, and a healthy new year.
Saturday 27 October 2012
New arrivals
At the clinic on Thursday they took blood for the next chimerism test (it is three months since I had the last DLI). There is an interesting article here about mixed chimerism and relapse rates if you can stomach the medical grammar! I will get the results in a couple of weeks, and I very much hope they show that no more of my original cells remain, as it will mean that my treatment is more or less complete. They also took enough blood for a BCR-ABL test (the test for cancerous cells) - again the results are available in a couple of weeks (I will write a post when I get them).
They have reduced the frequency of my visits to once every six weeks, in what I hope will be a continuing trend that eventually settles to once a year. The next major milestone for me is my vaccinations. I have the immune system of a baby. and so I will need all the common vaccinations, which they administer 18 months post transplant (so in December or January).
On the home front, we have new arrivals:
They have reduced the frequency of my visits to once every six weeks, in what I hope will be a continuing trend that eventually settles to once a year. The next major milestone for me is my vaccinations. I have the immune system of a baby. and so I will need all the common vaccinations, which they administer 18 months post transplant (so in December or January).
On the home front, we have new arrivals:
Their names are Kali (on the left) and Bella (on the right), and are just 4 months old. I know, they are impossibly cute in repose:) - but they can be very naughty!
Sunday 23 September 2012
Doing the Bridgathon
Today was the Bridgathon. The weather forecast was for wind and rain, so we donned our waterproofs and headed off to London in the car. In the backpack we had cheese rolls, water and rather optimistically an umbrella (it proved to be far too windy to use it).
We arrived at the meeting place on time, and got our tee-shirts. For maximum publicity we wore these over the top of our coats. Here we are at the start, still dry!
The walk was officially started by the charity's patron Julian Rhind-Tutt, a British TV actor. Here he is with Rose:
Julian told us that in a few days time it would be 20 years since he had his bone marrow transplant!
The walk started at the London Eye, and we set off toward Westminster bridge with the Houses of Parliament looking rather grand as the backdrop:
We arrived at the meeting place on time, and got our tee-shirts. For maximum publicity we wore these over the top of our coats. Here we are at the start, still dry!
The walk was officially started by the charity's patron Julian Rhind-Tutt, a British TV actor. Here he is with Rose:
Julian told us that in a few days time it would be 20 years since he had his bone marrow transplant!
The walk started at the London Eye, and we set off toward Westminster bridge with the Houses of Parliament looking rather grand as the backdrop:
We then crossed Westminster bridge, and continued walking along the riverside and crossing various bridges along the way. The walk passes lots of great landmarks along the Thames, but sadly the weather forecast was very accurate, and it got wetter and windier as the walk wore on, which made it harder to enjoy them. Here we are in front of the Golden Hind
We crossed over London's famous Tower Bridge at the furthest point of the walk, and by a coincidence it was raised to let a rather tall masted ship pass through.
We had our cheese rolls whilst waiting for the bridge to be reopened (just a few minutes), and then headed on towards the finish. The weather had become really bad by now - driving rain and wind - although there were still a decent number of tourists out and about!
As we were walking around, I did feel very proud of London, surely the greatest city on Earth. Nowehere else can you find such a fabulous mix of history, culture and stunning archictecture, both old and new. Here is the brand new London Shard:
We finally arrived at the finish after two and a quarter hours, tired and rather wet.
I also seem to have picked up a rather painful blister! The walk was just over 7 miles, and over 200 people took part, so despite the weather I think the day was a success. This is the route that we took:
Many thanks again to all of you who donated.
Friday 21 September 2012
The Bridgathon
This week at the clinic was fairly run of the mill. My counts are strong, even my haemoglobin is back to where it was before I got leukaemia. My blood pressure is also back to its former glory (110/60), and I even lost a little weight! I have had absolutely no GVH after the DLI in July, but I still hope that the cells are doing their work and killing off the last of my host lymphocytes. At the next clinic in October they will do another chimerism test, and I will find out.
On Sunday we are doing the "Bridgathon" - a walk over some of the bridges in London, in support of the leukaemia and lymphoma unit at UCH. Many thanks to all of you who donated to the charity, I know that they will use the money wisely.
On Sunday we are doing the "Bridgathon" - a walk over some of the bridges in London, in support of the leukaemia and lymphoma unit at UCH. Many thanks to all of you who donated to the charity, I know that they will use the money wisely.
Thursday 23 August 2012
Clinic, and some notes about BCR-ABL
Today in the clinic I got the results of the tests they did last time. The chimerism test was the same as the previous (to be expected); The latest DLI will kick in shortly, and I hope it will be the last.
The BCR-ABL test showed a weak positive, as it has done in the past. The consultant assures me that it may be a false positive, or it may be that there are some residual bad cells that will always be there and there is nothing to be concerned about. I asked what would happen if the test really is positive ... and there are some things they can do. One is to change my drug regime, and another is to give a large dose of DLI, in the hope that the donor lymphocytes will kill the leukaemia cells. In other words, it is worth doing the test! They normally do a BCR-ABL test every three months up to two years post transplant. There is not much science behind this, but after two years they just stop.
My blood counts are all good, and I am well, stronger than I have been since getting ill.
The BCR-ABL test showed a weak positive, as it has done in the past. The consultant assures me that it may be a false positive, or it may be that there are some residual bad cells that will always be there and there is nothing to be concerned about. I asked what would happen if the test really is positive ... and there are some things they can do. One is to change my drug regime, and another is to give a large dose of DLI, in the hope that the donor lymphocytes will kill the leukaemia cells. In other words, it is worth doing the test! They normally do a BCR-ABL test every three months up to two years post transplant. There is not much science behind this, but after two years they just stop.
My blood counts are all good, and I am well, stronger than I have been since getting ill.
Thursday 26 July 2012
DLI Round two
Today I get my second dose of mature lymphocytes (Donor Lymphocyte Infusion), because my last chimerism test showed a small amount of residual host T-cells. The doctor also ordered another chimerism test (to get another baseline) and a BCR-ABL test. The latter is to see if there are still no cancerous cells, and it is their policy to do this test every so often. I have rather mixed feelings about it, because if it shows positive then it is not good for me; I wonder if it is worth knowing! But then again, knowledge is better than ignorance I guess.
I am waiting for them to attempt to insert the cannula ...
We have had two unsuccessful attempts so far. The cells are here, in their liquid nitrogen container (very impressive). They unfreeze them in special hot water bath that is bubbling away next to me. I saw these before in Ambicare, and I always wondered what branch of modern medicine would require a hot water bath! Now I know; they unfreeze the cells and inject them as quickly as possible. Anyway, before I get the cells, I need to get the damn cannula inserted. When they find a good vein, it does not hurt, but it is uncomfortable when they miss ...
The cannula is in; at the fourth attempt.
After a long while, the container is opened and the bag of cells is put into the bath. The excitement is almost overwhelming! Not.
I hope this is the last DLI.
I am waiting for them to attempt to insert the cannula ...
We have had two unsuccessful attempts so far. The cells are here, in their liquid nitrogen container (very impressive). They unfreeze them in special hot water bath that is bubbling away next to me. I saw these before in Ambicare, and I always wondered what branch of modern medicine would require a hot water bath! Now I know; they unfreeze the cells and inject them as quickly as possible. Anyway, before I get the cells, I need to get the damn cannula inserted. When they find a good vein, it does not hurt, but it is uncomfortable when they miss ...
The cannula is in; at the fourth attempt.
After a long while, the container is opened and the bag of cells is put into the bath. The excitement is almost overwhelming! Not.
I hope this is the last DLI.
Thursday 28 June 2012
Slightly disappointing visit to the clinic
I was hoping to have a good result from my latest chimerism test, namely that I would be 100% donor; but sadly, a small amount of my host T-cells remain. Due to a slight mess-up by the lab we did not have the graphs, only a textual description of the results. My doctor will reserve judgement until she has seen the graphs, but it is likely that I will need another treatment of donor lymphocytes (a DLI). Harry will not need to donate any more cells, as they took enough for four doses, and froze them. The precise timing of the DLI is not important, so it will probably be at the same time as my next clinic.
I continue to be in good health, and I have decided to stop recording my blood results as they are totally normal. I am still gaining weight; modesty forbids me to reveal it! However, I have reached a watershed, and the time to cut down has arrived :(
I am now waiting for my last scheduled intrathecal dose of methotrexate. I hope the doctor is as skillful as the last one ... or maybe even the same doctor!
I continue to be in good health, and I have decided to stop recording my blood results as they are totally normal. I am still gaining weight; modesty forbids me to reveal it! However, I have reached a watershed, and the time to cut down has arrived :(
I am now waiting for my last scheduled intrathecal dose of methotrexate. I hope the doctor is as skillful as the last one ... or maybe even the same doctor!
Saturday 23 June 2012
One year old
It is one year since my transplant. June 23rd has become my second birthday!
It is hard to describe how I feel. On a simplistic level, glad to be alive and well. More philosophically, it has made me think about "luck". There is an expression "you make your own luck", which means that we can take choices and make decisions whereby good and bad luck just dictate the level of success we achieve. A very famous example of this kind of luck was when Gary Player played out of a bunker and into the hole, and someone watching said he was "lucky", to which Gary replied "the harder I practice, the luckier I get".
But getting leukaemia is a different kind of "luck". It was a random event, something that cannot be planned for, nor predicted. Similarly, my brother being a match for me as a donor is another kind of luck again. And us both being CMV negative.
Some things which were lucky I did have some control over. I was lucky not to get a bad infection after the transplant; but then I was very careful! I am lucky to have Rose to look after me :)
I know that my life expectancy is still not normal, but I do feel this is an important milestone. I will continue to blog after each of my clinic visits; at some point they will become quarterly rather than monthly.
Thank you all for your kind wishes and support over the worst times of my illness.
It is hard to describe how I feel. On a simplistic level, glad to be alive and well. More philosophically, it has made me think about "luck". There is an expression "you make your own luck", which means that we can take choices and make decisions whereby good and bad luck just dictate the level of success we achieve. A very famous example of this kind of luck was when Gary Player played out of a bunker and into the hole, and someone watching said he was "lucky", to which Gary replied "the harder I practice, the luckier I get".
But getting leukaemia is a different kind of "luck". It was a random event, something that cannot be planned for, nor predicted. Similarly, my brother being a match for me as a donor is another kind of luck again. And us both being CMV negative.
Some things which were lucky I did have some control over. I was lucky not to get a bad infection after the transplant; but then I was very careful! I am lucky to have Rose to look after me :)
I know that my life expectancy is still not normal, but I do feel this is an important milestone. I will continue to blog after each of my clinic visits; at some point they will become quarterly rather than monthly.
Thank you all for your kind wishes and support over the worst times of my illness.
Thursday 31 May 2012
T+342: Clinic
Things are running a bit slowly at the clinic today, and I had to wait a long time to see the doctor. My blood results were good: haemoglobin 13, platelets 199, neutrophils 3.3 and lymphocytes 0.9. They took blood for the next chimerism test today; if there are still any of my host T-cells left they will treat me with more mature lymphocytes.
I am currently waiting for what I hope to be my last nebulizer. They took blood for a "lymphocyte subset" test that gives a breakdown of what type of lymphocytes I have (there is a good article on Wikipedia about lymphocytes if you are interested). If the number of helper T-cells is high enough then I will not need any more nebulizers!
I learned today that the recovery rates of the different white cell components after a transplant are radically different. Neutrophils recover quickly, T-cells more slowly and B-cells very slowly. To compensate for my low white count, I take antibiotic and antiviral medication twice daily, and I will continue doing so for 5 years! This is how long it takes for the B-cells to recover completely. I will be very glad to still be here taking them four years from now!
I am currently waiting for what I hope to be my last nebulizer. They took blood for a "lymphocyte subset" test that gives a breakdown of what type of lymphocytes I have (there is a good article on Wikipedia about lymphocytes if you are interested). If the number of helper T-cells is high enough then I will not need any more nebulizers!
I learned today that the recovery rates of the different white cell components after a transplant are radically different. Neutrophils recover quickly, T-cells more slowly and B-cells very slowly. To compensate for my low white count, I take antibiotic and antiviral medication twice daily, and I will continue doing so for 5 years! This is how long it takes for the B-cells to recover completely. I will be very glad to still be here taking them four years from now!
Tuesday 22 May 2012
T+334: Chimerism Results
I rang the hospital to find out the results of the chimerism test, and I am pleased to say that the results were quite good. The fresh dose of mature lymphocytes from my brother seem to be working well, and there is only a small amount of my original host lymphocytes remaining; all of the B-cells are now donor, only a few T-cells of my own remain. They think that the mature lymphocytes are probably still doing good work, even 3 months after the infusion, and they do no plan another infusion just yet (remember, they took enough for four doses back in February). Considering I have only had very mild GVH (just some skin rash), I am very pleasantly surprised that the graft-versus-leukaemia effect has happened. They plan to do another chimerism test in June, which (given that there is some considerable cost associated with the test) I take to mean that they expect my remaining host cells to have been mopped up by then!
As I said last time, even when I have no remaining blood cells of my own there is still a chance of relapse, but this is the best outcome one can expect from the transplant.
As I said last time, even when I have no remaining blood cells of my own there is still a chance of relapse, but this is the best outcome one can expect from the transplant.
Thursday 3 May 2012
T+315: Chimerism questions
I am back in the clinic for my regular checkup, drinking a coffee whilst waiting for my nebulizer. I am well, and enjoying the cut and thrust of work (and ironically working harder than I did before I got leukaemia). I suppose it is quite natural, but I am more aware of the amount of cancer that is rife among us, particularly leukaemia. I read in the hospital charity newsletter that a 46 year old woman was admitted with leukaemia a month before me, and died whilst undergoing treatment. She would have been on the ward at the same time as me! It makes me realise how lucky I am.
My bloods are very stable; haemoglobin 12.4, platelets 178, neutrophils 2.51 and lymphocytes 0.89. Next time they will do a lymphocyte subset test, and if all is well I will change from havinng the pentamadine nebulizer to tablets, which will mean only a half day at the hospital (all being well).
They took blood for the chimerism test today, and I asked the doctor what the results really mean. Remember that the chimerism test is to see how many of my original host lymphocytes remain; the idea is that all of them will come from the donor (my brother). The best possible outcome is that all of my lymphocytes are donor lymphocytes. However, there is no real cure, and they do not really know how it affects the chances of relapse. As I have written before, my type of leukaemia (ALL) is quite rare in adults, and there is not much data to go on. The best indicator of long term survival is ... long term survival! In other words, the longer I am here, the more likely it is that I will be here longer! If I do relapse, they will not treat me again; if my disease is so aggressive that it can withstand a transplant, it is pointless repeating the process.
If I still have some residual host lymphocytes, they will give me another infusion of my brother's mature white cells; they are confident that at some stage I will have no more host lymphocytes. I will get the results in a couple of weeks.
On Sunday it was the stone setting for my Dad. Since I missed the funeral last year it was a good opportunity to say a formal goodbye to him. Even though I have no religion, I am sure he would have wanted all of his sons to say Kaddish (mourner's prayer) at his graveside, and it felt good to finally do so. It was also nice opportunity for a family get-together.
My bloods are very stable; haemoglobin 12.4, platelets 178, neutrophils 2.51 and lymphocytes 0.89. Next time they will do a lymphocyte subset test, and if all is well I will change from havinng the pentamadine nebulizer to tablets, which will mean only a half day at the hospital (all being well).
They took blood for the chimerism test today, and I asked the doctor what the results really mean. Remember that the chimerism test is to see how many of my original host lymphocytes remain; the idea is that all of them will come from the donor (my brother). The best possible outcome is that all of my lymphocytes are donor lymphocytes. However, there is no real cure, and they do not really know how it affects the chances of relapse. As I have written before, my type of leukaemia (ALL) is quite rare in adults, and there is not much data to go on. The best indicator of long term survival is ... long term survival! In other words, the longer I am here, the more likely it is that I will be here longer! If I do relapse, they will not treat me again; if my disease is so aggressive that it can withstand a transplant, it is pointless repeating the process.
If I still have some residual host lymphocytes, they will give me another infusion of my brother's mature white cells; they are confident that at some stage I will have no more host lymphocytes. I will get the results in a couple of weeks.
On Sunday it was the stone setting for my Dad. Since I missed the funeral last year it was a good opportunity to say a formal goodbye to him. Even though I have no religion, I am sure he would have wanted all of his sons to say Kaddish (mourner's prayer) at his graveside, and it felt good to finally do so. It was also nice opportunity for a family get-together.
Thursday 12 April 2012
T+294: Clinic runs smoothly
I am back at the hospital for an extra clinic appointment, and to get my Pentamadine nebulizer that I have once a month. The new building is slowly but surely getting into shape, and I was actually able to register electronically (although this is still something of a lottery, as others were unable to).
The main purpose of this appointment was to verify that my rash has not reappeared after stopping the steroids, and in fact the rash has almost gone (but not quite) so there is no concern there. My blood counts are lower than last time: haemoglobin 12.3 (OK, this is higher), platelets 143, neutrophils 2.52 and lymphocytes 0.81. The doctor says that the drop is caused by the methotrexate from the intrathecal, and my counts will recover in due course. In any case, they are pretty normal (platelets should strictly speaking be over 150).
All signs of GVHD have pretty much gone. Overall, the mature lymphocytes I got from my brother in February have caused very little trouble. This is good (no symptoms), but maybe also bad because it maybe means they did not attack my residual host lymphocytes. I will find out in May!
One change from the old regime is that the BMT clinic has now got dedicated phlebotomists to take blood. It was a pleasant surprise to see the excellent chap who used to take all the blood when I was an inpatient. He has excellent needle skills, and was definitely the go-to guy for a cannula when he nurses were having trouble finding a good vein.
I will have my next appointment in three weeks time, when they will take blood for the chimerism test. My long term survival really does depend on killing off my original lymphocytes, so these tests are the really important milestones in my treatment.
The main purpose of this appointment was to verify that my rash has not reappeared after stopping the steroids, and in fact the rash has almost gone (but not quite) so there is no concern there. My blood counts are lower than last time: haemoglobin 12.3 (OK, this is higher), platelets 143, neutrophils 2.52 and lymphocytes 0.81. The doctor says that the drop is caused by the methotrexate from the intrathecal, and my counts will recover in due course. In any case, they are pretty normal (platelets should strictly speaking be over 150).
All signs of GVHD have pretty much gone. Overall, the mature lymphocytes I got from my brother in February have caused very little trouble. This is good (no symptoms), but maybe also bad because it maybe means they did not attack my residual host lymphocytes. I will find out in May!
One change from the old regime is that the BMT clinic has now got dedicated phlebotomists to take blood. It was a pleasant surprise to see the excellent chap who used to take all the blood when I was an inpatient. He has excellent needle skills, and was definitely the go-to guy for a cannula when he nurses were having trouble finding a good vein.
I will have my next appointment in three weeks time, when they will take blood for the chimerism test. My long term survival really does depend on killing off my original lymphocytes, so these tests are the really important milestones in my treatment.
Wednesday 4 April 2012
T+286: Intrathecal
They gave me an appointment time of 09:30 today, but rather unsurprisingly when I arrived there was no record of it in the main reception. I came up to Haematology daycare and luckily the staff recognize me (amazing when you consider how many people are coming and going; they said "we don't remember everyone, but we remember you" - I am obviously once seen never forgotten :):).
After much searching and clicking they eventually found my appointment ... for 14:00! Since it would waste another thhree hours of my day to go home and come back, I decided to stay here and work. The WiFi is good and I brought my laptop with me just in case this might happen. Also, they have let me sit in one of the comfy "treatment" chairs (the new building has all new chairs and they are very nice) because they are not too busy yet. I can see the nurses struggling with the new IT system as I write - it is not impressive. I wont name and shame their supplier on this blog, and I know that all office moves are difficult, but I really think that they could have done a little better.
Having said all that, the treatment room is fabulous compared to the old Victorian hospital we used to be in. It is large, bright and well equippped. Each treatment chair has its own TV! I spent many long hours in Ambicare sitting in a chair recieving treatment, and I think the new facilites here are fantastic.
Now I will try to do some work whilst waitng for the dreaded intrathecal ...
They turfed me out of the chair at 12:00 because a real,patient needed it, and so I got some lunch. I came back to the reception at 2pm, and the doctor arrived, but told me there had been a bit of mistake with the prescription and the drug (methotrexate) was not ready. He ordered it from the pharmacy right away, but it meant another two hour delay. In the meantime I went over to the main pharmacy for a resupply of drugs. Eventually, the methotrexate arrived, and the procedure was done. This time, the doctor was very good, and I experienced almost no discomfort. All my previous intrathecals were done with me lying on my side, curled into a ball to stretch my lower back, but this one was done with me sitting up on the side of the bed, bent over forwards over a chair. it is a slightly less dignified position, but clearly has the same effect of stretching the lower back.
I am still in the hospital, just finishing my forced relaxation period after the intrathecal before heading home. A very long day in the hospital!
As usual, all of the staff here were very helpful and pleasant, especially the nurses, many of whom know me quite well by now. I have said it before many times, but I cannot praise them highly enough.
After much searching and clicking they eventually found my appointment ... for 14:00! Since it would waste another thhree hours of my day to go home and come back, I decided to stay here and work. The WiFi is good and I brought my laptop with me just in case this might happen. Also, they have let me sit in one of the comfy "treatment" chairs (the new building has all new chairs and they are very nice) because they are not too busy yet. I can see the nurses struggling with the new IT system as I write - it is not impressive. I wont name and shame their supplier on this blog, and I know that all office moves are difficult, but I really think that they could have done a little better.
Having said all that, the treatment room is fabulous compared to the old Victorian hospital we used to be in. It is large, bright and well equippped. Each treatment chair has its own TV! I spent many long hours in Ambicare sitting in a chair recieving treatment, and I think the new facilites here are fantastic.
Now I will try to do some work whilst waitng for the dreaded intrathecal ...
They turfed me out of the chair at 12:00 because a real,patient needed it, and so I got some lunch. I came back to the reception at 2pm, and the doctor arrived, but told me there had been a bit of mistake with the prescription and the drug (methotrexate) was not ready. He ordered it from the pharmacy right away, but it meant another two hour delay. In the meantime I went over to the main pharmacy for a resupply of drugs. Eventually, the methotrexate arrived, and the procedure was done. This time, the doctor was very good, and I experienced almost no discomfort. All my previous intrathecals were done with me lying on my side, curled into a ball to stretch my lower back, but this one was done with me sitting up on the side of the bed, bent over forwards over a chair. it is a slightly less dignified position, but clearly has the same effect of stretching the lower back.
I am still in the hospital, just finishing my forced relaxation period after the intrathecal before heading home. A very long day in the hospital!
As usual, all of the staff here were very helpful and pleasant, especially the nurses, many of whom know me quite well by now. I have said it before many times, but I cannot praise them highly enough.
Monday 2 April 2012
T+284:The new cancer centre at UCH
After my visit last Thursday I was asked to come back to the clinic today, and here I am. It is the first day of the brand new McMillan Cancer Centre and things are pretty chaotic, especially since I do not have an appointment! I got here early, and luckily I bumped into my medical team in the reception, and they are sorting things out.
They have WiFi here, so I can blog directly. I am sat in the waiting area on the fourth floor, with a rather gaudy floor covering, very teenies!
Originally I was supposed to come to the clinic on Thursday, and then have my intrathecal the following Tuesday. However, I have just seen the consultant, and she would like to see me in 10 days time, and not this Thursday. So, we have rearranged the intrathecal for this Wednesday, the 4th! I must have a blood test within six days of the intrathecal, and they can do this test today, so it all makes sense as it will save an extra trip back here just to give blood.
I am to stop taking the steroids, as they think the rash is probably not GVHD after all! I did not bother to write this before, but I have had a similar looking rash before, back in the late 80's, and it has reoccurred a couple of times since. The doctor thinks it is just as likely that this is the cause of my current rash. This rash was somewhat tentatively diagnosed as Lichen Planus (if you look at the picture on Wikipedia, I do not have the large blotches, but I have the small spots). It normally disappears after a few weeks, especially when exposed to sunlight, so we shall see.
My blood results from today were good; haemoglobin 11.8, platelets 208, neutrophils 4.65 and lymphocytes 0.8.
I am now waiting to give a second blood sample for the clotting test for the intrathecal ...
They have WiFi here, so I can blog directly. I am sat in the waiting area on the fourth floor, with a rather gaudy floor covering, very teenies!
Originally I was supposed to come to the clinic on Thursday, and then have my intrathecal the following Tuesday. However, I have just seen the consultant, and she would like to see me in 10 days time, and not this Thursday. So, we have rearranged the intrathecal for this Wednesday, the 4th! I must have a blood test within six days of the intrathecal, and they can do this test today, so it all makes sense as it will save an extra trip back here just to give blood.
I am to stop taking the steroids, as they think the rash is probably not GVHD after all! I did not bother to write this before, but I have had a similar looking rash before, back in the late 80's, and it has reoccurred a couple of times since. The doctor thinks it is just as likely that this is the cause of my current rash. This rash was somewhat tentatively diagnosed as Lichen Planus (if you look at the picture on Wikipedia, I do not have the large blotches, but I have the small spots). It normally disappears after a few weeks, especially when exposed to sunlight, so we shall see.
My blood results from today were good; haemoglobin 11.8, platelets 208, neutrophils 4.65 and lymphocytes 0.8.
I am now waiting to give a second blood sample for the clotting test for the intrathecal ...
Thursday 29 March 2012
T+280: Rash
Over the last couple of days I have developed a skin rash, that pretty much covers my whole body. It started a few days before that, but smaller. Since we are almost 8 weeks since my lymphocyte infusion it is the not altogether unexpected GVHD as those mature lymphocytes start attacking me! I just hope it is a positive sign that they are also attacking what is left of my host lymphocytes, which is the whole purpose of the treatment. Fortunately, it does not itch!
I took some pictures and emailed the clinic, and they asked me to come in so that a doctor could examine me, so I duly went to the hospital this afternoon. I had to wait 2 hours to see the doctor, who took a look and confirmed that it is GVHD! She prescribed oral steroids which I collected from the pharmacy. I managed to do 2 conference calls during the afternoon (somewhat patchily I must admit).
They have asked me to go back on Monday to see how the steroids are working, and to make sure it is not getting worse.
I took some pictures and emailed the clinic, and they asked me to come in so that a doctor could examine me, so I duly went to the hospital this afternoon. I had to wait 2 hours to see the doctor, who took a look and confirmed that it is GVHD! She prescribed oral steroids which I collected from the pharmacy. I managed to do 2 conference calls during the afternoon (somewhat patchily I must admit).
They have asked me to go back on Monday to see how the steroids are working, and to make sure it is not getting worse.
Friday 9 March 2012
T+260: Uncertainty
Yesterday I went for my regular clinic appointment. I continue to feel well, and my blood counts were OK; haemoglobin 12.5, platelets 178, neutrophils 2.7 and lymphocytes 0.8. I saw a new doctor, which was a little frustrating, but they are a teaching hospital and this will happen.
It is now 4 weeks since the first DLI (donor lymphocyte infusion - I learned a new acronym); if I am to get any GVHD it will start happening soon! I tried to sort out my schedule for the coming few months, but it is quite challenging, as there is a great deal of uncertainty. I managed to nail a couple of dates:
It is now 4 weeks since the first DLI (donor lymphocyte infusion - I learned a new acronym); if I am to get any GVHD it will start happening soon! I tried to sort out my schedule for the coming few months, but it is quite challenging, as there is a great deal of uncertainty. I managed to nail a couple of dates:
- My next clinic appointment will be in one month's time on the 5th April. They are opening a brand new daycare cancer centre at UCH, and I will get to see it then.
- My next intrathecal (lumbar puncture) will be on the 10th April. I am not looking forward to it, but they must be endured. Just two more to go.
- The next chimerism test (to see if any of my original lymphocytes are still present) will be on the 3rd May.
Friday 10 February 2012
T+232: Neutrophils recover
Today I visited the hospital as planned, and the blood-test results were actually very positive (I responded well to the GCSF). My neutrophils have bounced back to an impressive 4.0! In addition, my haemoglobin is up to 12.6 and platelets over 200. My lymphocytes are also above 1.0, but since I received a dose of them on Monday I am not sure it means very much. I did wonder if the result on Monday was due to a machine error, but they double check all the tests in the lab, and the result was accurate - something caused my neutrophils to crash, maybe a viral infection that has now passed? We will never know.
However, the doctor repeated to me that during my recovery my counts will fall from time to time, and the cause is not easy to determine; although I am in good health now, I think that it would be unwise for me to travel until I have a second positive blood-test result to show that things have settled down again.
Since I have no travel planned for the remainder of February, I will return during the first week of March for my next clinic appointment.
However, the doctor repeated to me that during my recovery my counts will fall from time to time, and the cause is not easy to determine; although I am in good health now, I think that it would be unwise for me to travel until I have a second positive blood-test result to show that things have settled down again.
Since I have no travel planned for the remainder of February, I will return during the first week of March for my next clinic appointment.
Monday 6 February 2012
T+228: Mature lymphocytes
Today I went to the hospital to get my first dose of mature lymphocytes from my brother Harry. But I also got some disturbing news about my blood counts ...
It snowed a couple of days ago, but the roads to London were all cleared nicely, and I arrived just after 09:30. Harry was already hooked up to the apheresis machine, but the vein they were taking the blood from kept spasming and stopping its blood supply. Eventually things settled down after they put a warm blanket round his arm, and the cells were collected. They did not take much - only about 100ml - but each dose is also quite small. After Harry was unhooked we went for lunch (fish and chips, very good as usual), and then came back for a quick check of Harry's blood which was all OK. The harvested cells went off to the lab, I went to the pharmacy and Harry went home. Let me thank Harry very much for his ongoing donations - I would not be here without them.
The cells came back from the lab OK, so they put in a cannula and took blood (it is a month since my last blood count). My haemoglobin is fine at 11.6, platelets OK at 178 and lymphocytes continuing to increase at 0.89; but my neutrophils have dropped to 0.72 (less than 0.5 is neutropenia). It was a bit like a slap in the face! It happened back in November, and they recovered OK, but it is still worrying. They gave me a shot of GCSF (stem cell growth hormone) and I am going back to the hospital on Friday to have another blood count. Fingers crossed eh!
The dose of lymphocytes they gave me was 4ml - so not very much! It was given with 500ml of saline, so it took over 30 minutes, but was uneventful. They start to work in 4 weeks ...
Last week we went to our house in France for the first time in 18 months. Although it was cold, we have a wood fire that really heats the house well, and it was very pleasant being there and making plans for the year. I am looking forward to going back in the near future.
It snowed a couple of days ago, but the roads to London were all cleared nicely, and I arrived just after 09:30. Harry was already hooked up to the apheresis machine, but the vein they were taking the blood from kept spasming and stopping its blood supply. Eventually things settled down after they put a warm blanket round his arm, and the cells were collected. They did not take much - only about 100ml - but each dose is also quite small. After Harry was unhooked we went for lunch (fish and chips, very good as usual), and then came back for a quick check of Harry's blood which was all OK. The harvested cells went off to the lab, I went to the pharmacy and Harry went home. Let me thank Harry very much for his ongoing donations - I would not be here without them.
The cells came back from the lab OK, so they put in a cannula and took blood (it is a month since my last blood count). My haemoglobin is fine at 11.6, platelets OK at 178 and lymphocytes continuing to increase at 0.89; but my neutrophils have dropped to 0.72 (less than 0.5 is neutropenia). It was a bit like a slap in the face! It happened back in November, and they recovered OK, but it is still worrying. They gave me a shot of GCSF (stem cell growth hormone) and I am going back to the hospital on Friday to have another blood count. Fingers crossed eh!
The dose of lymphocytes they gave me was 4ml - so not very much! It was given with 500ml of saline, so it took over 30 minutes, but was uneventful. They start to work in 4 weeks ...
Last week we went to our house in France for the first time in 18 months. Although it was cold, we have a wood fire that really heats the house well, and it was very pleasant being there and making plans for the year. I am looking forward to going back in the near future.
Thursday 12 January 2012
T+203: Treatment to enter a new phase
My treatment is to enter a new phase that I will explain below.
Firstly, my blood counts are good. Haemoglobin 12.2 (a bit low compared to how I used to be, but very good), platelets 189 (normal), neutrophils 2.95 (normal) and lymphocytes an impressive 0.66 (normal is 1.5). This is the second or third successive rise in my lymphocytes, and shows a clear upward trend. The lymphocytes themselves are composed of B cells and T cells, and the T cells further divided into CD4 and CD8. The CD4 level is a critical indicator, and they will start monitoring it now that the overall lymphocyte level is rising; 0.2 is the level at which my drug regime will change. I am fit to travel:)
I got the results of the various tests that I have had recently:
They are going to contact Harry (my donor brother) shortly, to arrange a screening medical. The lymphocytes are harvested in a similar manner to the original donation (via apheresis), but this time there is no need for any boosting injections, and the apheresis is shorter (about 2 hours). They take enough cells to dose me 4 times (a year's worth); the future doses are frozen. We will try and arrange the apheresis, and my first treatment for the week of the 6th of February, the week before I travel to the US. The timing is quite important, as I am likely to get GVHD from 4 to 8 weeks after the treatment, and they advise me not to travel in that period.
This time I will be able to visit Harry during his apheresis, Which I wanted to do for the original,transplant, but I became neutropenic and could not leave my hospital room.
I asked about travelling, precautions and so on. The doctor told me this (and I do trust his judgement):
All in all, a very positive visit to the hospital!
Firstly, my blood counts are good. Haemoglobin 12.2 (a bit low compared to how I used to be, but very good), platelets 189 (normal), neutrophils 2.95 (normal) and lymphocytes an impressive 0.66 (normal is 1.5). This is the second or third successive rise in my lymphocytes, and shows a clear upward trend. The lymphocytes themselves are composed of B cells and T cells, and the T cells further divided into CD4 and CD8. The CD4 level is a critical indicator, and they will start monitoring it now that the overall lymphocyte level is rising; 0.2 is the level at which my drug regime will change. I am fit to travel:)
I got the results of the various tests that I have had recently:
- The FISH test was negative. This is a test for a relapse of cancer, and is less sensitive than the BCR-ABL test (which showed a very weak positive). This is good news, as it confirms that I probably have not relapsed. However, the BCR-ABL test does mean there are still some problem cells ...
- The lumber puncture they did in the new year showed no cancerous cell in my spinal fluid. Just two more of these to endure during this year!
- My second chimerism results show that I still have some residual host T cells and B cells, in fact very similar to the first test (taken in October). This is not unexpected, and it means that my donor lymphocytes have got used to them, and are unlikely to kill them, and this what we want so that I have 100% donor lymphocytes (my neutrophils are already 100% donor, but since my leukaemia is lymphocytic, it doesn't help). The next step is to harvest some mature lymphocytes from my brother, and inject them into me. These new donor lymphocytes are not used to me, and so will attack - hopefully killing my residual lymphocytes, but also causing GVHD. They treat me with these lymphocytes in increasing doses every 12 weeks, starting with a small dose and tripling it each time. The hope is that they will kill off my residual lymphocytes before causing me too much grief with GVHD.
They are going to contact Harry (my donor brother) shortly, to arrange a screening medical. The lymphocytes are harvested in a similar manner to the original donation (via apheresis), but this time there is no need for any boosting injections, and the apheresis is shorter (about 2 hours). They take enough cells to dose me 4 times (a year's worth); the future doses are frozen. We will try and arrange the apheresis, and my first treatment for the week of the 6th of February, the week before I travel to the US. The timing is quite important, as I am likely to get GVHD from 4 to 8 weeks after the treatment, and they advise me not to travel in that period.
This time I will be able to visit Harry during his apheresis, Which I wanted to do for the original,transplant, but I became neutropenic and could not leave my hospital room.
I asked about travelling, precautions and so on. The doctor told me this (and I do trust his judgement):
- There is no point in wearing a mask on the plane. The masks offer some protection against bacteria, but nothing against viruses. You can get special anti-viral masks, but they are very uncomfortable and not warranted for me given my (good) blood counts.
- Whilst good hand hygiene is always a good idea, it mostly prevents the spread of bacteria. Since my neutrophils are normal, he thinks I don't need to take special care when travelling.
- I am no more likely to catch a cold on the plane than anyone else, but if I do it will just take longer for me to recover, and there is no special action I need to take; normal cold remedies are fine to use.
All in all, a very positive visit to the hospital!
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