Something I've been meaning to write about for a few weeks but kept forgetting. I've started twitching. No, I haven't become an obsessive birdwatcher. But my legs and arms have begun twitching or jerking occasionally while I'm relaxing in a chair or laying in bed waiting for sleep.
I first became aware of this a few weeks ago. One or both legs and arms, or more occasionally all four of them would twitch for no apparent reason. Often it would be a barely perceptible twitch. But sometimes it would be a jerk which would be noticeable if anyone was looking. To start with it only occurred when I was snoozing or relaxing. But just recently it has started occurring when I was carrying out some task. For example. this morning I was using the computer and my right hand jerked and released the mouse, sending it flying across the desktop.
Olga has been reading the small print in the clomipramine pack and found that "involuntary muscle movements" are a common side effect of the drug. But I have been taking clomipramine for its cancer-fighting properties ever since my treatment started, so why has this only recently begun occurring? Just a guess, but perhaps the steroids masked this side effect and it is only becoming noticeable now the dose of those has reduced to nothing?
I would be interested to know whether anyone else who has taken clomipramine has experienced involuntary muscle movements and if they have, was there anything they could do about it?
Showing posts with label Clomipramine. Show all posts
Showing posts with label Clomipramine. Show all posts
25 May - Water retention
100.8kg! My weight has reached its highest yet, despite trying to eat smaller portions and giving up biscuits and desserts. I don't know if there is a connection but my knees have started giving a sharp twinge when I try to get out of my chair.
I was grateful for my walking stick as I hauled myself out of the taxi to get to the doctors' surgery this morning. We were there to discuss the problems I have been experiencing in trying to give up the dexamethasone steroids. I have taken none for 4 days in a row now, and this is my third attempt.
The doctor explained - if I understood correctly - that steroids can mask symptoms of things that I have picked up due to the depressed state of my immune system caused by the chemotherapy. On stopping the steroids these other symptoms such as a couple of abscesses start coming to the fore.
A lot of my extra weight appears to be water retention. My feet and legs definitely look plumper, as does my stomach.
We came away with prescriptions for diuretics and also for the extra clomipramine mentioned by someone who commented to a post I made in the Macmillan support forum. I can now increase the dose of clomipramine to the 200mg daily now being advised by Prof. Pilkington.
Our GP is going to check my blood levels so I had to get four blood samples taken. It took two nurses and a doctor half an hour to get just about enough blood for the tests. Now I know what a pincushion feels like! It's always such a struggle getting any blood out of me that I'm thinking of changing my surname to Stone!
I was grateful for my walking stick as I hauled myself out of the taxi to get to the doctors' surgery this morning. We were there to discuss the problems I have been experiencing in trying to give up the dexamethasone steroids. I have taken none for 4 days in a row now, and this is my third attempt.
The doctor explained - if I understood correctly - that steroids can mask symptoms of things that I have picked up due to the depressed state of my immune system caused by the chemotherapy. On stopping the steroids these other symptoms such as a couple of abscesses start coming to the fore.
A lot of my extra weight appears to be water retention. My feet and legs definitely look plumper, as does my stomach.
We came away with prescriptions for diuretics and also for the extra clomipramine mentioned by someone who commented to a post I made in the Macmillan support forum. I can now increase the dose of clomipramine to the 200mg daily now being advised by Prof. Pilkington.
Our GP is going to check my blood levels so I had to get four blood samples taken. It took two nurses and a doctor half an hour to get just about enough blood for the tests. Now I know what a pincushion feels like! It's always such a struggle getting any blood out of me that I'm thinking of changing my surname to Stone!
10 May - Good news
Another appointment with the oncologist at Carlisle Infirmary to check on my progress and find out the results of my last MRI scan. The good news is that the tumour hasn't grown. The bad news is that it hasn't shrunk, either. The scan showed no change over the one made on 5 January. I had really been hoping for something a bit more positive to show for the weeks of tiredness caused by the chemotherapy, something extra to show some gain from our decision to take clomipramine in addition to the "standard" treatment. So to tell the truth I was a little disappointed. It seems the surgery and radiotherapy did most of the work in reducing the tumour from the size it was originally.
My next appointment with the consultant will be in three months' time but I won't have another MRI scan for six months unless I experience brain tumour symptoms in the meantime. We were a bit disappointed about that, too, as it smacks of a decision made on budgetary rather than clinical grounds. I've read quite a lot about these glioblastoma multiforme tumours. They can lie dormant for weeks, months or even years and then suddenly begin growing aggressively. I'd rather someone kept an eye on it a bit more frequently. I don't know if it is possible to find somewhere I could have an MRI scan privately. Olga finds our NHS rather "hands-off" compared to hospitals in the former Soviet Union.
The consultant, Olga and I discussed the issues I have had since the completion of treatment and I came away with some diuretic tablets to stop the water retention that may be accounting for a lot of my recent weight gain. Most people put on weight when they start taking the steroids; perversely I have really only started piling on the pounds after we began reducing the dosage.
We are also going to make another attempt to stop the steroids entirely: So far we have got down to 0.5mg or a quarter of a tablet which is about the size of a breadcrumb, but the last time we tried to stop completely I got a mild headache. Let's hope this time we are more successful.
My next appointment with the consultant will be in three months' time but I won't have another MRI scan for six months unless I experience brain tumour symptoms in the meantime. We were a bit disappointed about that, too, as it smacks of a decision made on budgetary rather than clinical grounds. I've read quite a lot about these glioblastoma multiforme tumours. They can lie dormant for weeks, months or even years and then suddenly begin growing aggressively. I'd rather someone kept an eye on it a bit more frequently. I don't know if it is possible to find somewhere I could have an MRI scan privately. Olga finds our NHS rather "hands-off" compared to hospitals in the former Soviet Union.
The consultant, Olga and I discussed the issues I have had since the completion of treatment and I came away with some diuretic tablets to stop the water retention that may be accounting for a lot of my recent weight gain. Most people put on weight when they start taking the steroids; perversely I have really only started piling on the pounds after we began reducing the dosage.
We are also going to make another attempt to stop the steroids entirely: So far we have got down to 0.5mg or a quarter of a tablet which is about the size of a breadcrumb, but the last time we tried to stop completely I got a mild headache. Let's hope this time we are more successful.
26 April - Off the steroids
Fingers crossed that there are no ill-effects: Today I have come off the dexomethasone (steroids.) As a consequence of that I have also stopped taking the lansoprazole. The lansoprazole is meant to protect my stomach from the dexomethasone, but lanzoprazole itself has undesirable side effects when taken for a long period including liver damage and diarrhea so I will be glad if I can give it up. If all goes well then from now on, clomipramine will be the only drug I am taking specifically for the brain tumour.
I'm still suffering from excessive looseness of the bowels. It is not particularly bad, just annoying. If it doesn't clear up soon with this reduced medication I guess I'll have to see the doctor. Diarrhea seems to be a common after effect of chemotherapy so there may not be much the doctor can do about it.
I'm more concerned about the breathlessness and spinning head I experience after climbing the stairs. I'm even less steady on my feet than usual and have almost fallen over a couple of times.
My weight this morning was 97.8kg, the highest it's ever been and my legs feel like I'm wearing concrete shoes. It's hardly possible to eat less without going on a starvation diet, which isn't recommended as I need strength and energy for my recovery. Hopefully stopping the steroids will help with the weight gain. I really hope that with the end of treatment my fitness will start getting back to normal.
I'm still suffering from excessive looseness of the bowels. It is not particularly bad, just annoying. If it doesn't clear up soon with this reduced medication I guess I'll have to see the doctor. Diarrhea seems to be a common after effect of chemotherapy so there may not be much the doctor can do about it.
I'm more concerned about the breathlessness and spinning head I experience after climbing the stairs. I'm even less steady on my feet than usual and have almost fallen over a couple of times.
My weight this morning was 97.8kg, the highest it's ever been and my legs feel like I'm wearing concrete shoes. It's hardly possible to eat less without going on a starvation diet, which isn't recommended as I need strength and energy for my recovery. Hopefully stopping the steroids will help with the weight gain. I really hope that with the end of treatment my fitness will start getting back to normal.
14 March - Dichloroacetate
Still soldiering on. A reader from the USA wrote to direct me to an article about using the orphan generic drug dichloroacetate (DCA) as a treatment for glioblastoma. As with clomipramine, this seems to be another case of a drug originally developed to treat other conditions turning out to have potential uses against brain cancer. It isn't something I'd want to try now, never mind on my own initiative - the article suggests that this could be dangerous. But it is certainly something worth knowing about.
It is interesting that the clinical trials which took place in Canada were funded by public institutions. Here in the UK it appears that trials into the use of inexpensive generic drugs like clomipramine or dichloroacetate are never likely to take place as there is no money to be made from them by the drugs companies. Why doesn't our NHS fund research like this? It would probably cost a fraction of the money that has been squandered on IT systems as well as opening the door to lower cost treatments. As so often in this country, there is an unhealthy relationship between our politicians, public services and big business.
It is interesting that the clinical trials which took place in Canada were funded by public institutions. Here in the UK it appears that trials into the use of inexpensive generic drugs like clomipramine or dichloroacetate are never likely to take place as there is no money to be made from them by the drugs companies. Why doesn't our NHS fund research like this? It would probably cost a fraction of the money that has been squandered on IT systems as well as opening the door to lower cost treatments. As so often in this country, there is an unhealthy relationship between our politicians, public services and big business.
15 January - Life goes on
Life goes on. I'm not feeling too bad at the moment. Not as fit or alert as I was before the tumour. But fit and alert enough to get frustrated and annoyed when I want to do something and find it much more difficult or even impossible. Then I have to go and read the stories of some other people who have glioblastoma to remind myself that I've been relatively lucky not to have had worse symptoms of the tumour or side effects of the treatments.
I've added a Useful Links panel to the blog. This is to help new readers find information related to the use of clomipramine to treat brain tumours and one or two other useful web sites.
I've added a Useful Links panel to the blog. This is to help new readers find information related to the use of clomipramine to treat brain tumours and one or two other useful web sites.
29 December - Cheering news
Four out of five days of the heavy dose of chemo. I'm not feeling quite as bad as I did the previous cycle. I guess the body gets used to it to a certain extent. My hands have even been steady enough to do a bit of soldering.
Olga and I were enormously cheered to read the comment posted this afternoon by Tara Stevens to my post back in August about clomipramine. She writes that her mother was diagnosed with inoperable brain cancer and had aggressive breast cancer as well and was given six months to live. After taking clomipramine both tumours eventually disappeared and she has beaten the doctors' prognosis by six years!
If Tara's mum can do it so can I. We'll beat that bugger!
Olga and I were enormously cheered to read the comment posted this afternoon by Tara Stevens to my post back in August about clomipramine. She writes that her mother was diagnosed with inoperable brain cancer and had aggressive breast cancer as well and was given six months to live. After taking clomipramine both tumours eventually disappeared and she has beaten the doctors' prognosis by six years!
If Tara's mum can do it so can I. We'll beat that bugger!
4 December - Off the temozolomide
I've been off the temozolomide for a couple of days now. Still feeling mildly nauseous. Not enough to be in any real danger of throwing up, but enough that I probably would not bother to eat if Olga hadn't gone to the trouble of putting food in front of me.
Fortuitously, I am not due the next batch of poison until just after the Christmas festivities. Hopefully my appetite will be restored by then. I do like my roast turkey and Christmas pudding, not to mention my Camembert and a nice piece of crumbly Cheddar.
I normally also enjoy a glass or three of red wine to go with the aforementioned items so it has been quite a hardship having to avoid alcohol for the last few months. Alcohol is not exactly prohibited, particularly by the chemotherapy, but it is recommended to avoid it if you take clomipramine as it increases the side effects. Unfortunately clomipramine is not one of those drugs you can just stop taking for a few days. You have to change the dose gradually. So I can't just come off it for a Christmas / New Year break.
All being well I will allow myself a trial glass of wine on Christmas Eve to see what happens. If that causes no ill effects then I have two more days to finish the bottle before my next batch of chemotherapy tablets. Because although as I said the warnings about alcohol don't apply to the temozolomide, I think that taking alcohol along with with temo, clomipramine, dexomethazone and all the other tablets would be a bit too much.
Fortuitously, I am not due the next batch of poison until just after the Christmas festivities. Hopefully my appetite will be restored by then. I do like my roast turkey and Christmas pudding, not to mention my Camembert and a nice piece of crumbly Cheddar.
I normally also enjoy a glass or three of red wine to go with the aforementioned items so it has been quite a hardship having to avoid alcohol for the last few months. Alcohol is not exactly prohibited, particularly by the chemotherapy, but it is recommended to avoid it if you take clomipramine as it increases the side effects. Unfortunately clomipramine is not one of those drugs you can just stop taking for a few days. You have to change the dose gradually. So I can't just come off it for a Christmas / New Year break.
All being well I will allow myself a trial glass of wine on Christmas Eve to see what happens. If that causes no ill effects then I have two more days to finish the bottle before my next batch of chemotherapy tablets. Because although as I said the warnings about alcohol don't apply to the temozolomide, I think that taking alcohol along with with temo, clomipramine, dexomethazone and all the other tablets would be a bit too much.
26 November - Feeling depressed
I hope that clomipramine is more effective against cancer than it is as an antidepressant. Because I have been on the full 150mg dose for several weeks now and yet I'm feeling quite depressed. The dizziness / balance issue I have complained of doesn't help my mood as it thwarts any attempt to try to lead a normal life. Neither does it help that I decided to see if I could sell our website business in order to devote my time and strength to fighting the cancer and enjoying what's left of my life. As tasks go it is right down there with selling one of your children into slavery and planning your own funeral. Perhaps it would be better just to let the business die a natural death.
On Friday afternoon we had two appointments at the Radiotherapy Department in Carlisle, first to be given a blood test and then to see the consultant. Originally the appointments had been on separate days but the hospital phoned to rearrange it so we only had to make one round trip. My blood counts were fine, so there was no impediment to starting the second cycle of heavy chemotherapy. However the radiotherapy should not be causing any side effects this long after it finished. It might be the clomipramine instead. So I am to have a new MRI scan to see what might be going on.
Unfortunately the plan to start the second cycle of chemo this weekend failed because when Olga went to the hospital pharmacy to get the medication they did not have sufficient temozolomide tablets. Apparently I am the only person in North Cumbria to be receiving this particular medication. You would think that with all the managers employed in the NHS someone would have devised a system that ensured the hospital pharmacy had stock of the drugs needed by current patients. Obviously not.
We have just had a phone call to say that the hospital will send us the remaining tablets by taxi on Tuesday afternoon. With the ones that we have we can start the cycle tomorrow (Sunday.) This delay will at least mean that I won't be starting cycle 3 on Christmas Day.
On Friday afternoon we had two appointments at the Radiotherapy Department in Carlisle, first to be given a blood test and then to see the consultant. Originally the appointments had been on separate days but the hospital phoned to rearrange it so we only had to make one round trip. My blood counts were fine, so there was no impediment to starting the second cycle of heavy chemotherapy. However the radiotherapy should not be causing any side effects this long after it finished. It might be the clomipramine instead. So I am to have a new MRI scan to see what might be going on.
Unfortunately the plan to start the second cycle of chemo this weekend failed because when Olga went to the hospital pharmacy to get the medication they did not have sufficient temozolomide tablets. Apparently I am the only person in North Cumbria to be receiving this particular medication. You would think that with all the managers employed in the NHS someone would have devised a system that ensured the hospital pharmacy had stock of the drugs needed by current patients. Obviously not.
We have just had a phone call to say that the hospital will send us the remaining tablets by taxi on Tuesday afternoon. With the ones that we have we can start the cycle tomorrow (Sunday.) This delay will at least mean that I won't be starting cycle 3 on Christmas Day.
20 October - GP appointment
This morning we had an appointment with our GP about the problem with my hands shaking. She said that it is hard to be sure given the treatments I am having but the tremor and the feeling dizzy could both be caused by the clomipramine. She has doubled the dose of procyclidine which was supposed to stop the shaking. But it may come to the point where I have to choose between steady hands or clomipramine.
As I'm not allowed to drive anyway and don't have to hold down a job the dizziness and tremors are mostly just an inconvenience compared to the extra time that we believe the clomipramine will buy me. It would certainly be nice to have a clear head, be steady on my feet and not have shaking hands, but the main impact of these symptoms is to make it impossible for me to undertake any electronic constructional work for my ham radio hobby. I haven't tried, but I guess I'd find sending morse code difficult too.
I've noticed that I hit the wrong keys a lot more often when using the computer keyboard. The clomipramine is also the reason I have to avoid alcohol - because I feel a bit drunk even when I am sober!
As I'm not allowed to drive anyway and don't have to hold down a job the dizziness and tremors are mostly just an inconvenience compared to the extra time that we believe the clomipramine will buy me. It would certainly be nice to have a clear head, be steady on my feet and not have shaking hands, but the main impact of these symptoms is to make it impossible for me to undertake any electronic constructional work for my ham radio hobby. I haven't tried, but I guess I'd find sending morse code difficult too.
I've noticed that I hit the wrong keys a lot more often when using the computer keyboard. The clomipramine is also the reason I have to avoid alcohol - because I feel a bit drunk even when I am sober!
8 October - Still shaking
I've been taking the new tablets, Procyclidine, prescribed by the GP to stop my hands shaking, for 4 days now. It doesn't seem to have made any difference. Today I wired a 13 Amp mains plug on to a piece of equipment. I managed it in the end, but I found it quite difficult to secure the wire to the pins because the blade of the screwdriver was vibrating by a few millimetres. I don't think I could attempt any electronic construction work at the moment.
When I go back to see the GP I will mention this, of course, in case there is an alternative anti-tremor medication. One of my readers mentioned beta blockers, which I don't think Procyclidine is.
Still, if it's a choice between taking clomipramine and living with a hand tremor or not taking it and letting the tumour grow back again unimpeded after my chemotherapy is over, the decision is - pardon the pun - a no-brainer.
When I go back to see the GP I will mention this, of course, in case there is an alternative anti-tremor medication. One of my readers mentioned beta blockers, which I don't think Procyclidine is.
Still, if it's a choice between taking clomipramine and living with a hand tremor or not taking it and letting the tumour grow back again unimpeded after my chemotherapy is over, the decision is - pardon the pun - a no-brainer.
4 October - Jelly legs and hand shake
Four days since I finished radiotherapy and chemotherapy but I haven't noticed much improvement yet in how I'm feeling. Still feel a bit dizzy, my vision is sometimes out of focus, my legs feel like jelly because my knees tremble, and my hands shake.
Visited the GP surgery as we had to sort out repeat prescriptions for some of my medications. Mentioned these symptoms and she thought it might be the clomipramine, though it is too soon after all the other treatment to be sure what is to blame. In case it is the clomipramine she prescribed another tablet to take that should stop the trembling. So fingers crossed that it will do the trick.
My former employer has already written to my GP regarding whether I would be eligible for early retirement on medical grounds so hopefully I will find out about that soon.
Visited the GP surgery as we had to sort out repeat prescriptions for some of my medications. Mentioned these symptoms and she thought it might be the clomipramine, though it is too soon after all the other treatment to be sure what is to blame. In case it is the clomipramine she prescribed another tablet to take that should stop the trembling. So fingers crossed that it will do the trick.
My former employer has already written to my GP regarding whether I would be eligible for early retirement on medical grounds so hopefully I will find out about that soon.
11 September - Dizziness and hand tremors
A brief update. Feeling less tired and apathetic than a week ago. However the dizziness and hand tremors are worse. Olga noticed my hands shaking at breakfast this morning and was concerned about it.
I am up to the full 150mg dose of Clomipramine now, so we are hitting the tumour full blast with all the weapons at our disposal. We suspect that the shaking hands may be one of the side effects of the clomipramine, but it may be connected with the other treatments. Given time the body may adapt to it.
The only inconvenience is that I can't use the soldering iron, something I haven't felt like doing in the last couple of weeks anyway. If that's the sacrifice I have to make to gain some extra time in the land of the living then I'll just have to put up with it.
I am up to the full 150mg dose of Clomipramine now, so we are hitting the tumour full blast with all the weapons at our disposal. We suspect that the shaking hands may be one of the side effects of the clomipramine, but it may be connected with the other treatments. Given time the body may adapt to it.
The only inconvenience is that I can't use the soldering iron, something I haven't felt like doing in the last couple of weeks anyway. If that's the sacrifice I have to make to gain some extra time in the land of the living then I'll just have to put up with it.
27 August - Very drowsy
On advice from the GP, I took another 25mg Clomipramine with my evening meal last night. It takes a while for the body to adapt to the drug, which is why the dosage has to be built up slowly.
I'm glad to say I had no unpleasant experiences this time and Olga says that I slept well. But I am indescribably drowsy this morning.
I'm glad to say I had no unpleasant experiences this time and Olga says that I slept well. But I am indescribably drowsy this morning.
26 August - Clomipramine side effects?
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.
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.
18 August - Clomipramine my best hope?
Whilst waiting for the car to arrive to take me to Carlisle I was leafing through the Radio Times and noticed something that got my interest. On Tuesday 23 August at 8pm on BBC Radio 4 there will be a programme with the title: Treating Tumours: Old Drug, New Tricks.
According to the programme synopsis: Ten years ago, researchers discovered that the out-of-fashion antidepressant drug clomipramine has apparently remarkable anti-tumour properties. What's more the treatment costs pennies, not hundreds or thousands of pounds. Yet these scientists have struggled to find anyone to back their research.
Obviously I haven't heard the programme yet, but a quick bit of Googling on my smartphone turned up enough information to get quite excited. The Canceractive web page on using Clomipramine to treat brain tumours suggests this drug has very positive benefits in treating the aggressive glioblastoma multiforme tumour that the doctors claim I have. Of all the alternative therapies I've read about or people have told me about, Clomipramine seems to offer the best chance of beating the tumour and extending my life.
Whilst I was at Carlisle today I mentioned the Radio 4 programme to the radiologists, who all duly made a note of it. I then asked if I could see the consultant doctor to discuss the possibility of trying this drug. So we'll see what he says.
According to the programme synopsis: Ten years ago, researchers discovered that the out-of-fashion antidepressant drug clomipramine has apparently remarkable anti-tumour properties. What's more the treatment costs pennies, not hundreds or thousands of pounds. Yet these scientists have struggled to find anyone to back their research.
Obviously I haven't heard the programme yet, but a quick bit of Googling on my smartphone turned up enough information to get quite excited. The Canceractive web page on using Clomipramine to treat brain tumours suggests this drug has very positive benefits in treating the aggressive glioblastoma multiforme tumour that the doctors claim I have. Of all the alternative therapies I've read about or people have told me about, Clomipramine seems to offer the best chance of beating the tumour and extending my life.
- It kills brain tumour cells whilst sparing normal brain tissue.
- It is an old drug so a lot is already known about its side effects: which are mostly minor - sleepiness and a dry mouth, though there is an increased risk of seizures.
- It is compatible with the Temozolomide chemotherapy drug that I have just started taking and can increase its effectiveness.
- Patients who have taken Clomipramine have survived for five years whereas the usual survival rate for people with glioblastoma multiforme is only a few months.
Whilst I was at Carlisle today I mentioned the Radio 4 programme to the radiologists, who all duly made a note of it. I then asked if I could see the consultant doctor to discuss the possibility of trying this drug. So we'll see what he says.
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