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.
Friday, 13 December 2013
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!
Friday, 5 July 2013
Discharge (from hospital)
After the doctor telling me yesterday I would be here for the weekend, I rang Babs this morning and asked her to bring in some serious supplies for the weekend. Shortly after we spoke my consultant arrived.
My liver scan of yesterday was completely normal, and my liver function tests have improved, so she decided that I really don't need to be here any longer, and that today I will be discharged. I will complete the antiviral treatment with a strong oral dose rather than by IV. My "pox" has pretty much all scabbed over, and the pain is the same as ever, controlled by the pregabalin. I need to come back for a final checkup next Wednesday and then hopefully I can get on with life.
After they left, I tried to ring Babs with no success, and so she soon arrived loaded with food that now I will take home with me. Still, we had a nice chat for half an hour, mainly golf gossip.
So now I am in my room, all packed up and watching Wimbledon, waiting for the pharmacy to dispense my medication so that I can go home.
I will write what I hope is a closing post to this sorry episode after my consultation next Wednesday.
- Posted using BlogPress from my iPad
My liver scan of yesterday was completely normal, and my liver function tests have improved, so she decided that I really don't need to be here any longer, and that today I will be discharged. I will complete the antiviral treatment with a strong oral dose rather than by IV. My "pox" has pretty much all scabbed over, and the pain is the same as ever, controlled by the pregabalin. I need to come back for a final checkup next Wednesday and then hopefully I can get on with life.
After they left, I tried to ring Babs with no success, and so she soon arrived loaded with food that now I will take home with me. Still, we had a nice chat for half an hour, mainly golf gossip.
So now I am in my room, all packed up and watching Wimbledon, waiting for the pharmacy to dispense my medication so that I can go home.
I will write what I hope is a closing post to this sorry episode after my consultation next Wednesday.
- Posted using BlogPress from my iPad
Thursday, 4 July 2013
Disseminated varicella zoster virus
I have "disseminated VZV". VZV is the chickenpox virus, which normally resurfaces as shingles when it recurs, but for me it has recurred "disseminated", which means that the virus is in my bloodstream. Basically, I have chickenpox!
My health is OK. I have some nerve pain in my back and across my stomach, but it is low grade enough to forget about when otherwise occupied. After being told early on that I would be allowed to leave the room, now I am told I cannot. This is rather annoying, but I don't think I can fight it.
My liver function tests are not perfect, so I am going for an ultrasound of the liver later this morning. In preparation for this I am nil-by-mouth (but only for four hours).
The registrar who admitted me has just visited. They will not discharge me until the virus is negative in my blood, which will not be before the weekend. I must confess the prospect of spending another 5 days in here is a bit depressing. Also, he says the neuralgia may last weeks, and can get worse after the rash has cleared up! However, we can increase the dose of pregabalin accordingly ... if the pain can be managed to its current level, then I will be OK.
- Posted using BlogPress from my iPad
My health is OK. I have some nerve pain in my back and across my stomach, but it is low grade enough to forget about when otherwise occupied. After being told early on that I would be allowed to leave the room, now I am told I cannot. This is rather annoying, but I don't think I can fight it.
My liver function tests are not perfect, so I am going for an ultrasound of the liver later this morning. In preparation for this I am nil-by-mouth (but only for four hours).
The registrar who admitted me has just visited. They will not discharge me until the virus is negative in my blood, which will not be before the weekend. I must confess the prospect of spending another 5 days in here is a bit depressing. Also, he says the neuralgia may last weeks, and can get worse after the rash has cleared up! However, we can increase the dose of pregabalin accordingly ... if the pain can be managed to its current level, then I will be OK.
- Posted using BlogPress from my iPad
Wednesday, 3 July 2013
Steady progress
It is 14:40 on Wednesday. I slept pretty well, and was awake at 6am for the next dose of IV aciclovir. The vein started hurt towards the end, so we removed the cannula afterwards. I had high hopes for that cannula, but my veins are not in good shape.
Early in the morning Babs rang offering to bring supplies, which was very nice. She popped in later with crisps, nibbles and sandwiches and fizzy water to supplement the legendarily bad hospital food. She stayed long enough to hear the story so far (with a few embellishments); good luck in the club championship Babs. Then my brother Les rang, just to say hello in between meetings, and pretty soon after that Marilyn rang (from a very boomy stairwell) to wish me well and let me know she has not had chickenpox. Quite a busy morning!
Shortly after lunch the on-duty haematology registrar came to say hello, and hear some of the history. She inserted a new cannula into the back of my left hand, and I am currently receiving the next dose of aciclovir. After she left my consultant came to see me. After checking me over and seeing my general state of health, she thinks I will probably not be here too much longer (again non-committal, but at least positive). She thinks it is unlikely that there will be prolonged posttherpetic neuralgia (i.e. chronic nerve pain), which I very much hope.
Time to watch the tennis ...
- Posted using BlogPress from my iPad
Early in the morning Babs rang offering to bring supplies, which was very nice. She popped in later with crisps, nibbles and sandwiches and fizzy water to supplement the legendarily bad hospital food. She stayed long enough to hear the story so far (with a few embellishments); good luck in the club championship Babs. Then my brother Les rang, just to say hello in between meetings, and pretty soon after that Marilyn rang (from a very boomy stairwell) to wish me well and let me know she has not had chickenpox. Quite a busy morning!
Shortly after lunch the on-duty haematology registrar came to say hello, and hear some of the history. She inserted a new cannula into the back of my left hand, and I am currently receiving the next dose of aciclovir. After she left my consultant came to see me. After checking me over and seeing my general state of health, she thinks I will probably not be here too much longer (again non-committal, but at least positive). She thinks it is unlikely that there will be prolonged posttherpetic neuralgia (i.e. chronic nerve pain), which I very much hope.
Time to watch the tennis ...
- Posted using BlogPress from my iPad
Tuesday, 2 July 2013
Supplemental
I am back in UCH, T8 room 31. Visitors allowed, but I can leave the hospital; call me first and if I am not hooked up we can have a drink or even lunch somewhere in or around Fitzrovia :) I am not contagious unless you touch me (and why would you?), but if you have never had chickenpox then steer well clear.
It is very depressing being back in a hospital room. I had hoped to put a few more years between me and the hospital, but clearly I was just naive. I spoke to a doctor (not one previously known to me), who told me this:
I should stay in until all the pustules have scabbed over. Then, they may allow me to go home, but the pain will probably endure for some time. However, the drug regime seems to keep that more or less under control, so with a bit of luck, and given that the disease already spread for four days, I may be home by the weekend (but as you know, I am an eternal optimist).
- Posted using BlogPress from my iPad
It is very depressing being back in a hospital room. I had hoped to put a few more years between me and the hospital, but clearly I was just naive. I spoke to a doctor (not one previously known to me), who told me this:
I should stay in until all the pustules have scabbed over. Then, they may allow me to go home, but the pain will probably endure for some time. However, the drug regime seems to keep that more or less under control, so with a bit of luck, and given that the disease already spread for four days, I may be home by the weekend (but as you know, I am an eternal optimist).
- Posted using BlogPress from my iPad
Location:T8, bed 31
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