Round one of the chemotherapy has finished without too many problems. The anaemia is very slowly worsening making me a little more SOB on exertion. My platelets keep falling and needed topping up yesterday just to keep the level in double figures.
The bowel problem, GvHD, seems to have gone! The chemotherapy is causing the opposite problem! All being well the steroids will stop completely at the end of next week, perhaps then I will start to lose this puffy 'moon face' look though it will probably take some months to fade away.
To some extent the next three months will be just marking time, three more rounds of chemotherapy and trying to avoid infections. My aim is to try and improve my fitness level in the meantime so that if I get into remission I will be in a reasonable physical state, not so easy when going upstairs make me short of breath and my leg muscles ache so 'fitness' is a relative term.
If I'm not in remission then I need to be in good shape to cope with whatever they want to throw at me next.
We've had several visitors in the last week or so and it is great to have a change of company for both Karine and I. We try to make the best of each day, time has become a precious commodity. Last night we had our granddaughter Eden staying with us, a real bundle of love, sunshine, happiness and enthusiasm. We are very lucky to have her nearby.
* Pavlov's Dog - Pampered Menial - track 2
Saturday 26 November 2016
Friday 18 November 2016
R+8 - "Only a Pawn in Their Game" *
Karine continues to run me to the hospital each day, my concentration isn't the best and half the main carpark is closed for refurbishment so finding a space is a nightmare. I've had nine appointments/procedures this week. The chemotherapy started at the beginning of the week and continues into the first two days of next week. Apart from having a bruised abdomen (two deep subcutaneous injections everyday) I seem to be being spared too many side effects so far.
My platelets keep tumbling. Today I have had a third unit of platelets just to maintain them at a minimum level. I'm acquiring a few more bruises each day and generally have no idea how they happen.
Apart from feeling tired and getting short of breath from the anaemia I feel fairly well, just still rather shocked by the relapse and the thought that the transfusions are all that keep me going whilst we wait to see if the chemotherapy will work.
The powers that be are definitely conspiring against me. When I relapsed my consultant mentioned four options, another transplant (banned by Jeremy Hunt in the summer - grrr!), inpatient chemotherapy (still an option), something called Donor Lymphocyte Infusion (more cells from my sister but this would significantly aggravate the GvHD) and finally Azacitidine which is what I'm having. Unfortunately NICE has recently announced that it is considering banning this drug for patients with AML over the age of 65, it's too expensive for the effect it has -grr!.
Fortunately I'm only 64 - phew - so I should be able to continue the course. By the time the course finishes I will be nearly 65. I don't know what happens if it is found to be working. The data sheet recommends a longer course in that instance. The alternative is probably further inpatient therapy, which one of the consultants called 'hand grenade therapy' - sounds fun!
Anyway, there is now a respite from all this over the weekend, time to live a little.
* Bob Dylan - The Times They Are A-Changin' - track 6
My platelets keep tumbling. Today I have had a third unit of platelets just to maintain them at a minimum level. I'm acquiring a few more bruises each day and generally have no idea how they happen.
Apart from feeling tired and getting short of breath from the anaemia I feel fairly well, just still rather shocked by the relapse and the thought that the transfusions are all that keep me going whilst we wait to see if the chemotherapy will work.
The powers that be are definitely conspiring against me. When I relapsed my consultant mentioned four options, another transplant (banned by Jeremy Hunt in the summer - grrr!), inpatient chemotherapy (still an option), something called Donor Lymphocyte Infusion (more cells from my sister but this would significantly aggravate the GvHD) and finally Azacitidine which is what I'm having. Unfortunately NICE has recently announced that it is considering banning this drug for patients with AML over the age of 65, it's too expensive for the effect it has -grr!.
Fortunately I'm only 64 - phew - so I should be able to continue the course. By the time the course finishes I will be nearly 65. I don't know what happens if it is found to be working. The data sheet recommends a longer course in that instance. The alternative is probably further inpatient therapy, which one of the consultants called 'hand grenade therapy' - sounds fun!
Anyway, there is now a respite from all this over the weekend, time to live a little.
* Bob Dylan - The Times They Are A-Changin' - track 6
Wednesday 16 November 2016
R+6 - "Just Passing Through" *
These blogs had previously dated from the day of the transplant know as "D Day" in the Haematology department. This no longer seems quite so appropriate since I've relapsed hence R+7 - days that is.
We had very happy weekend celebrating Karine's birthday with a meal on Saturday in a hotel just south of Nottingham and afternoon tea with friends and neighbours on Sunday afternoon.
Leonard Cohen - "Live Songs" - track 2
We had very happy weekend celebrating Karine's birthday with a meal on Saturday in a hotel just south of Nottingham and afternoon tea with friends and neighbours on Sunday afternoon.
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| Eden showing us how to use a Selfie Stick! |
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| Stewart & Charlotte |
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| Eden |
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| Birthday Tea at Home |
Leonard Cohen - "Live Songs" - track 2
Thursday 10 November 2016
D+15 months - "Ego Relapsus Resurgo" *
Finally a result from the BM Biopsy but not the one we wanted. The blood counts have all fallen some more than others and the Biopsy shows that the Leukaemia is back. We had been told from the start that this was on the cards but 18 months after going into remission you begin to think it won't happen.
The plan is transfusions of various sorts to treat the low blood counts and outpatient chemotherapy for seven days each month for four months, the aim being to get back into remission then a repeat BM Biopsy & Aspirate in about March time. Don't know what the success rate of this treatment is.
Karine & I only learnt this news an hour or two ago so we've neither of us taken it on board properly yet. It did seem the obvious cause for the falling counts but it is one thing to suspect a relapse and another to have it confirmed.
Enough for now,
I think this is Latin for "When I fall I shall rise"
The plan is transfusions of various sorts to treat the low blood counts and outpatient chemotherapy for seven days each month for four months, the aim being to get back into remission then a repeat BM Biopsy & Aspirate in about March time. Don't know what the success rate of this treatment is.
Karine & I only learnt this news an hour or two ago so we've neither of us taken it on board properly yet. It did seem the obvious cause for the falling counts but it is one thing to suspect a relapse and another to have it confirmed.
Enough for now,
I think this is Latin for "When I fall I shall rise"
Thursday 3 November 2016
D+15 months - "Love and Hard Times" *
Tuesday saw another stab at getting some bone marrow out of my pelvis - actually, five or six stabs - I lost count! This was done by a Dr rather than the specialist nurse. After a couple of unsuccessful attempts at a BM Aspirate he had a go at a Biopsy and got a sample.
Then he had at least a couple more goes at an Aspirate and finally got a really good Aspirate sample, thank goodness, I was very very pleased. The result is I am pretty sore and have a lot more holes in my backside than I was born with!
Whilst I was in the department they gave me a unit of platelets for good measure. Hopefully this will reduce my tendency to bruise at the drop of a hat, at least for a while.
If all goes well I should get the preliminary results from the aspirate at Thursday's clinic - 3rd November, fingers crossed. The full result will take another week or two as usual.
On Wednesday Graeme and Noelle took us to Clumber park in north Notts. The trees were fantastic, such beautiful colours and at times it was raining golden leaves. The sun shone through the branches dappling the leaves with a magical autumnal light (is there such a word as dappling?), an excellent distraction from everything else going on.
Thursday - time passes slowly when you are waiting and sleep is elusive. The morning dragged by at a snails pace. Eventually we got to clinic, my haemoglobin has fallen some more, 10.4g/dl. The EPO hasn't had time to kick in yet, I've only been back on it for two weeks. The platelets had risen thanks to Tuesday's transfusion.
Eventually Karine and I were ushered in to the consulting room - no result, nothing, zilch, not a drop! The aspirate sample turned out to be blood only, no bone marrow cells. The naked eye appearance of the two is the same. Everything now hangs on the Biopsy sample which 'should' be available this time next week.
Being in limbo is no fun but can't be helped. I feel wrung out by all this. I need a cure starting with a cup of tea, then a nap and then some distractions over the next few days! All will be well till next Thursday but there is plenty of time to think about that later.
* Paul Simon - "So Beautiful or So What" - track 5
Then he had at least a couple more goes at an Aspirate and finally got a really good Aspirate sample, thank goodness, I was very very pleased. The result is I am pretty sore and have a lot more holes in my backside than I was born with!
Whilst I was in the department they gave me a unit of platelets for good measure. Hopefully this will reduce my tendency to bruise at the drop of a hat, at least for a while.
If all goes well I should get the preliminary results from the aspirate at Thursday's clinic - 3rd November, fingers crossed. The full result will take another week or two as usual.
On Wednesday Graeme and Noelle took us to Clumber park in north Notts. The trees were fantastic, such beautiful colours and at times it was raining golden leaves. The sun shone through the branches dappling the leaves with a magical autumnal light (is there such a word as dappling?), an excellent distraction from everything else going on.
Thursday - time passes slowly when you are waiting and sleep is elusive. The morning dragged by at a snails pace. Eventually we got to clinic, my haemoglobin has fallen some more, 10.4g/dl. The EPO hasn't had time to kick in yet, I've only been back on it for two weeks. The platelets had risen thanks to Tuesday's transfusion.
Eventually Karine and I were ushered in to the consulting room - no result, nothing, zilch, not a drop! The aspirate sample turned out to be blood only, no bone marrow cells. The naked eye appearance of the two is the same. Everything now hangs on the Biopsy sample which 'should' be available this time next week.
Being in limbo is no fun but can't be helped. I feel wrung out by all this. I need a cure starting with a cup of tea, then a nap and then some distractions over the next few days! All will be well till next Thursday but there is plenty of time to think about that later.
* Paul Simon - "So Beautiful or So What" - track 5
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