I hope our happiness at getting the clomipramine will not turn out to be short-lived.
I slept reasonably well but had a bit of a headache in the middle of the night. Took paracetamol. Early in the morning around 5.30-6am I awoke with my mucles feeling a bit tense, especially across my stomach, and feeling slightly sick. After a while I got up, or rather sat up, and felt very woozy indeed. I was lolling around like a very drunk person. After a while the feeling passed. I lay down and rested with some deep breathing until I heard Olga getting up. She checked my blood pressure with the machine we have got and said it was normal but a bit lower than usual for me.
I didn't have much appetite for breakfast this morning but began to feel better after tea, coffee and porridge. Right now (9am) I'm feeling pretty much back to how I have been feeling on other mornings. But at the time it was not a pleasant experience.
We don't know if it was the clomipramine that caused this - after all, I had only taken one tablet before going to bed the night before - but it will be easy enough to check. If you Google "clomipramine blood pressure" you will find that clomipramine can cause low blood pressure and some people may be hypersensitive to it and experience low blood pressure shortly after taking it. I don't know if I am one of those people, but one time a few years ago about half an hour after my GP gave me an injection for something else, I blacked out in a concert in Cockermouth and ended up in Whitehaven hospital after a fast ride in an ambulance. No-one found an explanation for why it happened. So perhaps I am hypersensitive to certain drugs.
It would be rather a blow if, having suffered almost none of the side effects of the treatment I have been receiving so far, I am unable to take this Clomipramine on which we had pinned our hopes. We will just have to wait and then try it again in a couple of days to see if what I felt this morning was just coincidence, a one-off.
Watch this space.
25 August - Starting clomipramine
We have Clomipramine!
Olga managed to get us an appointment this afternoon with her GP - a woman doctor, whose first comment after we explained what we wanted was "No problem". She also said that if she was in the same situation as me she would do the same thing. She could not have been more helpful. (She also said that she couldn't see why my consultant at Carlisle couldn't have prescribed the Clomipramine in the first place as it is an approved drug and as it is also a cheap one "it would not break the hospital's budget.")
At my treatment session today one of the radiologists showed me a scan of my brain and pointed out the tumour and the ways they were beaming X-rays at it. It was only an A4 print-out and not as clear as it looks on the computer, she said. Still, it looked quite big to me. If that's what is still there, what did the surgeon at Newcastle take out? I hope the next time I see a picture of it, it will be smaller.
Feeling pretty tired now. The Clomipramine is supposed to make you drowsy as well so I will take the first tablet before I go to bed tonight. We have to build up the dose from 25mg a day to 150mg a day in steps of three days, increasing 25mg at a time. At least I should sleep well!
Olga managed to get us an appointment this afternoon with her GP - a woman doctor, whose first comment after we explained what we wanted was "No problem". She also said that if she was in the same situation as me she would do the same thing. She could not have been more helpful. (She also said that she couldn't see why my consultant at Carlisle couldn't have prescribed the Clomipramine in the first place as it is an approved drug and as it is also a cheap one "it would not break the hospital's budget.")
At my treatment session today one of the radiologists showed me a scan of my brain and pointed out the tumour and the ways they were beaming X-rays at it. It was only an A4 print-out and not as clear as it looks on the computer, she said. Still, it looked quite big to me. If that's what is still there, what did the surgeon at Newcastle take out? I hope the next time I see a picture of it, it will be smaller.
Feeling pretty tired now. The Clomipramine is supposed to make you drowsy as well so I will take the first tablet before I go to bed tonight. We have to build up the dose from 25mg a day to 150mg a day in steps of three days, increasing 25mg at a time. At least I should sleep well!
24 August - Disappointed
Back from another session of radiotherapy feeling rather disappointed.
After I first found out about Clomipramine I asked one of the radiologists if we could see the consultant oncologist to discuss the possibility of taking it. I even provided some information, in the form of a printout of what I had found on the internet, so they and the consultant knew what I was talking about.
I heard back from the radiologists that the consultant "could see no reason why I shouldn't take Clomipramine" and we were promised an appointment with him today to discuss it. This we had.
I had really expected to walk away from that appointment with a prescription for Clomipramine together with a recommended dose to take as a monitored part of my treatment programme. But I was told that, though he thought it would be beneficial for my treatment, he could not prescribe it as treatment for a brain tumour because it had not been approved for that purpose by NICE.
Instead, he told us I should go to my GP and get it prescribed as an antidepressant. This was rather disappointing, since first of all the GP may be unwilling to prescribe it either, and secondly because the dose of the medicine prescribed for depression may not be the correct dose for treatment of brain tumours. When we asked if he could provide a letter for the GP explaining why we wanted a prescription for this drug, he handed me a photocopy of the printout I had made from the internet to give to the radiologist!
When I asked about dosage, the consultant suggested that we used the internet to try to find out by contacting the various people at universities in the UK that had done research into using Clomipramine to treat brain tumours. But I am already feeling out of my depth. I may be able to find out solutions to computer or ham radio related problems but reading medical research papers - or even knowing where to find them in the first place - is outside my experience. Besides, I'm not sure that doctors or researchers will even be willing to provide that information to lay members of the public.
This is harder than I thought it was going to be. I really had expected more help from the medical profession. What with the tiredness caused by the radiotherapy, at the moment I don't even know where to start. I could do without having to deal with doctors passing the buck.
After I first found out about Clomipramine I asked one of the radiologists if we could see the consultant oncologist to discuss the possibility of taking it. I even provided some information, in the form of a printout of what I had found on the internet, so they and the consultant knew what I was talking about.
I heard back from the radiologists that the consultant "could see no reason why I shouldn't take Clomipramine" and we were promised an appointment with him today to discuss it. This we had.
I had really expected to walk away from that appointment with a prescription for Clomipramine together with a recommended dose to take as a monitored part of my treatment programme. But I was told that, though he thought it would be beneficial for my treatment, he could not prescribe it as treatment for a brain tumour because it had not been approved for that purpose by NICE.
Instead, he told us I should go to my GP and get it prescribed as an antidepressant. This was rather disappointing, since first of all the GP may be unwilling to prescribe it either, and secondly because the dose of the medicine prescribed for depression may not be the correct dose for treatment of brain tumours. When we asked if he could provide a letter for the GP explaining why we wanted a prescription for this drug, he handed me a photocopy of the printout I had made from the internet to give to the radiologist!
When I asked about dosage, the consultant suggested that we used the internet to try to find out by contacting the various people at universities in the UK that had done research into using Clomipramine to treat brain tumours. But I am already feeling out of my depth. I may be able to find out solutions to computer or ham radio related problems but reading medical research papers - or even knowing where to find them in the first place - is outside my experience. Besides, I'm not sure that doctors or researchers will even be willing to provide that information to lay members of the public.
This is harder than I thought it was going to be. I really had expected more help from the medical profession. What with the tiredness caused by the radiotherapy, at the moment I don't even know where to start. I could do without having to deal with doctors passing the buck.
22 August - Outing to Keswick
Feeling not quite as great as I was a week or so ago. I'm still not feeling any major effects of the chemotherapy apart from the constipation, so I'm now taking the prescribed laxatives as well as eating prunes and beetroot. But I'm feeling more tired and lethargic than I did before treatment started. I'm taking it easier on the exercise bike. And where I had a lot of enthusiasm for blogging and doing little hobby projects before, now I often can't be bothered. The radiologists said that this is normal.
Saturday's outing to Keswick was a mixed success. We got what we went for and walked further along the lake shore than on our previous visit. But I had not thought of, and failed to take into account, the fact that the chemo tablets still need to be taken on an empty stomach and I should not eat for a further two hours. By the time we reached the furthest point from the town I had not eaten anything for 3 hours and started to lose energy. I felt cold and sweaty at the same time and was worried about catching a chill. After I had something to eat in the cafe at the Theatre by the Lake I soon felt a lot better. But the experience was a reminder that even on the days when I am not going for treatment my activities are still limited.
Just a reminder: the BBC 4 radio programme about Clomipramine: Treating Tumours: Old drug, New tricks is at 8pm tonight.
Saturday's outing to Keswick was a mixed success. We got what we went for and walked further along the lake shore than on our previous visit. But I had not thought of, and failed to take into account, the fact that the chemo tablets still need to be taken on an empty stomach and I should not eat for a further two hours. By the time we reached the furthest point from the town I had not eaten anything for 3 hours and started to lose energy. I felt cold and sweaty at the same time and was worried about catching a chill. After I had something to eat in the cafe at the Theatre by the Lake I soon felt a lot better. But the experience was a reminder that even on the days when I am not going for treatment my activities are still limited.
Just a reminder: the BBC 4 radio programme about Clomipramine: Treating Tumours: Old drug, New tricks is at 8pm tonight.
19 August - Headache
Had a headache last night. It was just a nagging one when I went to bed but got worse during the night and paracetamol didn't help it. It soon went after I got up and had breakfast, though.
Still no nausea from the temazolomide and I only took one of the two anti-sickness tablets. Tomorrow, since there is no radiotherapy over the weekend, I won't take the anti-sickness tablets at all and see how I get on. I don't believe in taking drugs just for the sake of it. I'm taking enough medications already.
Went for the second dose of radiotherapy this afternoon. As before it was quick and painless. Feeling a little bit tired and lethargic on my return home, but that might be partly due to the lack of sleep caused by the headache. Today's hospital voluntary car service driver had been through radiotherapy and said that the tiredness only really kicked in after the first two weeks of it.
Tomorrow Olga and I will probably take the bus to Keswick for the day. It may be the last time I feel energetic enough to go out somewhere until this course of radiotherapy is over.
Still no nausea from the temazolomide and I only took one of the two anti-sickness tablets. Tomorrow, since there is no radiotherapy over the weekend, I won't take the anti-sickness tablets at all and see how I get on. I don't believe in taking drugs just for the sake of it. I'm taking enough medications already.
Went for the second dose of radiotherapy this afternoon. As before it was quick and painless. Feeling a little bit tired and lethargic on my return home, but that might be partly due to the lack of sleep caused by the headache. Today's hospital voluntary car service driver had been through radiotherapy and said that the tiredness only really kicked in after the first two weeks of it.
Tomorrow Olga and I will probably take the bus to Keswick for the day. It may be the last time I feel energetic enough to go out somewhere until this course of radiotherapy is over.
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