Yesterday I was discharged from the Bone Marrow Transplant clinic, just over 6 years post transplant. Shortly before this I had a bone density test which is now routinely given post transplant, but was more sporadic 5 years ago (I did not have one then). One reason for ordering the test now was that I fell and broke my wrist last year, and my consultant thought it might be possible that low bone density may have been a factor. The results of the test indeed show that my bone density is low, but fortunately it can be treated with medication. Curiously, it makes me feel somewhat less foolish for breaking my wrist (I can at least partially blame the cancer)!
So this life-changing episode is now formally over. Somewhat surprisingly to me the BMT regime that I had in 2011 has remained almost unaltered, and the chances of survival are more or less the same also.
I leave you with a quote from an unlikely source (for me) - Pope John XXIII. I only read about him when searching for a quote, and it turns out he was quite an interesting man! He said
Consult not your fears, but your hopes and dreams
Friday, 18 August 2017
Thursday, 23 July 2015
Four years on
It has been a year since I posted here, and I think it is high time I gave an update for any current or future sufferer of leukaemia that might be reading this and thinking, "so what happened".
Well, the answer is rather satisfyingly that nothing has happened, at least nothing related to cancer! Today I had an appointment at the clinic, which I now attend at six month intervals. Sadly, the nursing staff seem to have rotated, so there were no familiar faces there, but the consultants are still the same.
The likelihood of a relapse is now very low (1 or 2% at most), and to all intents and purposes it is like I was never ill. However, they continue to take a BCR-ABL test every six months just to be sure nothing has happened. My ferritin level was still slightly high six months ago, and if it has not dropped I will need to have more venesection (i.e. blood letting), I will find out next week.
My message to anyone suffering from leukaemia, and undergoing the chemotherapy regime and bone marrow transplant that I had, is that there is light at the end of the tunnel, and to keep a positive outlook. And of course to do what they tell you, however difficult it seems!
I think that surviving an aggressive cancer has made me treat life with even greater equanimity and optimism than I did previously. I am not saying for one moment that leukaemia is life enhancing, but there is a lot of truth in the clichet "what doesn't kill you makes you stronger"!
Well, the answer is rather satisfyingly that nothing has happened, at least nothing related to cancer! Today I had an appointment at the clinic, which I now attend at six month intervals. Sadly, the nursing staff seem to have rotated, so there were no familiar faces there, but the consultants are still the same.
The likelihood of a relapse is now very low (1 or 2% at most), and to all intents and purposes it is like I was never ill. However, they continue to take a BCR-ABL test every six months just to be sure nothing has happened. My ferritin level was still slightly high six months ago, and if it has not dropped I will need to have more venesection (i.e. blood letting), I will find out next week.
My message to anyone suffering from leukaemia, and undergoing the chemotherapy regime and bone marrow transplant that I had, is that there is light at the end of the tunnel, and to keep a positive outlook. And of course to do what they tell you, however difficult it seems!
I think that surviving an aggressive cancer has made me treat life with even greater equanimity and optimism than I did previously. I am not saying for one moment that leukaemia is life enhancing, but there is a lot of truth in the clichet "what doesn't kill you makes you stronger"!
Sunday, 13 July 2014
Of needles and nerves
These posts become less and less frequent, coinciding as they do with my clinic visits. At some stage I will just not bother to write any more, and the story will end, but seemingly not now!
I realised this week as I was driving to the hospital that it has been three months since someone stuck a needle in me. This is the longest interval since October 2010. You get used to it! I am healthy, and in fact have flown abroad twice without getting an infection, so there was not much to say in the clinic. From the blood they took they will do a BCR-ABL test as usual, together with a ferritin level to make sure that the venesection was indeed successful. My next visit will be six months from now, in January 2015. When I first visited the transplant clinic they told me that they will continue to monitor me at least once a year for the rest of my life; seems like soon I will be at that frequency.
The nerve pain in my left toes continues to be the most significant after-effect of the chemo. I have been taking 300mg of Gabapentin twice a day for the last three years. Recently, I have tried to reduce this to once a day in the evening, with some success. I hope one day to be able to live without this drug. I also still take antibiotics twice a day, and will do so for two more years, but this will be much easier to stop than the Gabapentin.
I realised this week as I was driving to the hospital that it has been three months since someone stuck a needle in me. This is the longest interval since October 2010. You get used to it! I am healthy, and in fact have flown abroad twice without getting an infection, so there was not much to say in the clinic. From the blood they took they will do a BCR-ABL test as usual, together with a ferritin level to make sure that the venesection was indeed successful. My next visit will be six months from now, in January 2015. When I first visited the transplant clinic they told me that they will continue to monitor me at least once a year for the rest of my life; seems like soon I will be at that frequency.
The nerve pain in my left toes continues to be the most significant after-effect of the chemo. I have been taking 300mg of Gabapentin twice a day for the last three years. Recently, I have tried to reduce this to once a day in the evening, with some success. I hope one day to be able to live without this drug. I also still take antibiotics twice a day, and will do so for two more years, but this will be much easier to stop than the Gabapentin.
Friday, 11 April 2014
Positive Outlook
I had another checkup at the clinic yesterday, and had a rather upbeat discussion with my consultant.
Two weeks previously I received the latest results of the venesection I have been having (blood-letting to you and me) at my local hospital, and my ferritin levels are normal. They will check the level once more in three months just to make sure it did not rise back above normal, but hopefully it means no more venesection.
The last two times I flew (in January and March) I got quite ill when I came home, and I wanted to know if this was more likely to happen to me because of the immaturity of my immune system, and if there was anything I could do to prevent it happening. My consultant told me that although my immune system is not as "knowledgeable" as you would expect in someone of my age (i.e. it has seen fewer viruses), there is nothing that can be done and I should forget about it and just get on with life! We went on to discuss the chances of a relapse of the leukaemia ...
When I was first diagnosed, I was told that the 5 year survival rates were 40%. Yesterday, my consultant said that because the type of cancer I had was very aggressive, the vast majority of relapses would occur within 6 months to 18 months post transplant. It is almost 3 years since my transplant, and whilst there is a chance of a relapse, she said it was so small that it was almost negligible. In other words, my condition is as good as it gets, and my life expectancy should be more or less the same as any other man of my age and general health; I am far more likely to die of something else than a relapse of leukaemia. You will notice that I am dancing around the word "cured", as all this is against a backdrop that my BCR-ABL test results continue to show a weak positive (meaning the abnormality has not gone away). But I did leave with a very positive outlook on life.
In March we went on vacation to Mexico to meet and greet the grey whales that swim into the lagoons on the pacific coast to breed and birth. We planned this holiday whilst I was in hospital in 2011, and finally were able to go this year. It is a unique experience, as the whales swim up to the boats and play (they like to be splashed and petted). Here is a selfie with a mother and baby whale ...
Two weeks previously I received the latest results of the venesection I have been having (blood-letting to you and me) at my local hospital, and my ferritin levels are normal. They will check the level once more in three months just to make sure it did not rise back above normal, but hopefully it means no more venesection.
The last two times I flew (in January and March) I got quite ill when I came home, and I wanted to know if this was more likely to happen to me because of the immaturity of my immune system, and if there was anything I could do to prevent it happening. My consultant told me that although my immune system is not as "knowledgeable" as you would expect in someone of my age (i.e. it has seen fewer viruses), there is nothing that can be done and I should forget about it and just get on with life! We went on to discuss the chances of a relapse of the leukaemia ...
When I was first diagnosed, I was told that the 5 year survival rates were 40%. Yesterday, my consultant said that because the type of cancer I had was very aggressive, the vast majority of relapses would occur within 6 months to 18 months post transplant. It is almost 3 years since my transplant, and whilst there is a chance of a relapse, she said it was so small that it was almost negligible. In other words, my condition is as good as it gets, and my life expectancy should be more or less the same as any other man of my age and general health; I am far more likely to die of something else than a relapse of leukaemia. You will notice that I am dancing around the word "cured", as all this is against a backdrop that my BCR-ABL test results continue to show a weak positive (meaning the abnormality has not gone away). But I did leave with a very positive outlook on life.
In March we went on vacation to Mexico to meet and greet the grey whales that swim into the lagoons on the pacific coast to breed and birth. We planned this holiday whilst I was in hospital in 2011, and finally were able to go this year. It is a unique experience, as the whales swim up to the boats and play (they like to be splashed and petted). Here is a selfie with a mother and baby whale ...
Friday, 13 December 2013
Imatinib no more!
Three months ago I discussed my continued use of Imatinib with my consultant, and we agreed that I would continue taking Imatinib for the foreseeable future. Yesterday in the clinic we discussed it again, and this time decided that there is not much point in continuing with it, so I have stopped. I have trusted my doctors until now, and they have taken good care of me, so I think it will be fine. It is one less pill to take anyway.
My BCR-ABL test was negative, which is always nice to hear, but rather like the (usual) weak positive, it does not have much significance. All of these results so close to zero have no significance either way, as they push the boundaries of the accuracy of the test. However, because of the positive results, I will continue with the quarterly visits to the clinic for a while yet. They keep telling (and so I keep writing here) me that if my type of leukaemia is going to relapse, it happens sooner rather than later. As time passes, the relevance of these tests diminishes, and they will probably move me to yearly visits.
My BCR-ABL test was negative, which is always nice to hear, but rather like the (usual) weak positive, it does not have much significance. All of these results so close to zero have no significance either way, as they push the boundaries of the accuracy of the test. However, because of the positive results, I will continue with the quarterly visits to the clinic for a while yet. They keep telling (and so I keep writing here) me that if my type of leukaemia is going to relapse, it happens sooner rather than later. As time passes, the relevance of these tests diminishes, and they will probably move me to yearly visits.
Friday, 20 September 2013
Imatinib forever?
During the summer I slowly reduced my dose of Lyrica (pregabalin) to nothing, with no adverse effects, and life returned to normal quite easily.
On Wednesday I saw the consultant at my local hospital regarding the hemochromatosis. My ferritin level is currently 600, and a normal level is between 20 and 40, so there is some way to go. I will continue with the venesection every month until this level comes down. Apparently the ferritin level does plateau for a while and then drops significantly.
On Thursday I visited the BMT clinic for my regular checkup. We discussed my continued use of Imatinib (it seems a long time ago since I wrote about it, but this drug is normally stopped 2 years post transplant). There is very little evidence to support the use of Imatinib post transplant at all, let alone for two years. On the other hand, my BCR-ABL tests (for cell abnormalities) continue to show a weak positive, so we decided that I will continue with the Imatinib for the foreseeable future! There are two reasons to stop: one is cost (the UK government is paying for my medication), and the other is long term toxicity. Imatinib is used in the treatment of chronic myeloid leukaemia (CML), and people with CML have been taking it since 2000 (or earlier); there is a good article on the long term effects here if you are interested (probably not as much as I was).
My two clinics are now synchronised to the same week at 3 monthly intervals.
On Wednesday I saw the consultant at my local hospital regarding the hemochromatosis. My ferritin level is currently 600, and a normal level is between 20 and 40, so there is some way to go. I will continue with the venesection every month until this level comes down. Apparently the ferritin level does plateau for a while and then drops significantly.
On Thursday I visited the BMT clinic for my regular checkup. We discussed my continued use of Imatinib (it seems a long time ago since I wrote about it, but this drug is normally stopped 2 years post transplant). There is very little evidence to support the use of Imatinib post transplant at all, let alone for two years. On the other hand, my BCR-ABL tests (for cell abnormalities) continue to show a weak positive, so we decided that I will continue with the Imatinib for the foreseeable future! There are two reasons to stop: one is cost (the UK government is paying for my medication), and the other is long term toxicity. Imatinib is used in the treatment of chronic myeloid leukaemia (CML), and people with CML have been taking it since 2000 (or earlier); there is a good article on the long term effects here if you are interested (probably not as much as I was).
My two clinics are now synchronised to the same week at 3 monthly intervals.
Wednesday, 10 July 2013
All clear
Today I went for my check-up and the doctor gave me the all-clear, so I can recommence my life.
I am feeling pretty well; the rash has all but disappeared, and I just have some residual neuralgia (nerve pain) in my upper right back. The doctor says that I can increase the dose of pregabalin from 75mg twice daily to 100mg twice daily, and it will probably control the neuralgia. Having read the Wikipedia article about pregabalin, I am keen to reduce and stop it as soon as possible, but the neuralgia may last for some weeks, so it will be a case of experimenting with the dosage. In the short term I will increase to 100 and see what effect it has. In addition to the pregabalin, I am on a course of high-dose oral antivirals (the drug is called valaciclovir) that will end on the 15th of July.
I have been feeling more tired than usual during this week, as a result of the viral infection. However this effect is diminishing as the antivirals do their work, and I feel stronger each day. Now that my immune system has had a good look at VZV, I hope it will keep it under control for the foreseeable future!
I am feeling pretty well; the rash has all but disappeared, and I just have some residual neuralgia (nerve pain) in my upper right back. The doctor says that I can increase the dose of pregabalin from 75mg twice daily to 100mg twice daily, and it will probably control the neuralgia. Having read the Wikipedia article about pregabalin, I am keen to reduce and stop it as soon as possible, but the neuralgia may last for some weeks, so it will be a case of experimenting with the dosage. In the short term I will increase to 100 and see what effect it has. In addition to the pregabalin, I am on a course of high-dose oral antivirals (the drug is called valaciclovir) that will end on the 15th of July.
I have been feeling more tired than usual during this week, as a result of the viral infection. However this effect is diminishing as the antivirals do their work, and I feel stronger each day. Now that my immune system has had a good look at VZV, I hope it will keep it under control for the foreseeable future!
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