I spoke (well, wrote) too soon. Today we had to go to the GP surgery. When the taxi arrived, I found I could barely stand up. I only made it to the car with Olga's support.The doctor found me a weelchair to go out. My head was spinning and I had no balance at all. Surprising as I'd been getting better and better at the physiotherapist's balance exercises.
Olga said this was due to withdrawal symptoms from the reduced dose of steroids. She found a quarter of a dexamethasone tablet in her bag, which I took with a cup of water from the surgery's water cooler and soon began to feel a bit better. Olga remembered that I had had similar problems when I tried to give up steroids the first time. I don't remember so I had to look back in this blog to refresh my memory. I even have an itchy rash like I did back in June last year. Hopefully I won't get shingles again like I did then.
So it looks as if I'll have to keep taking a quarter of a tablet a day. It's disappointing,. My appetite has been less great and I had even begun to lose a little weight since we started reducing the steroid dosage,
Showing posts with label Dexomethasone. Show all posts
Showing posts with label Dexomethasone. Show all posts
9 January - Off the steroids
Today I have taken no dexamethasone (steroid.) We have been gradually reducing the dose a fraction of a tablet at a time. Hopefully I'll now be able to lose the 10kg of weight that I put on since the operation.
Also hopefully there won't be too much need for posting to this blog. I no longer feel that I have one foot in the grave. I expect I'll have cancer cells in my brain forever, but I'm at least a few paces away from the grave at this moment.
I still have to overcome the after effects of surgery: my dodgy vision and balance problems . The number of times I've had to correct typos just to write this post is a reminder that I'm not fully recovered yet. So this may not be the last post to this blog. Not just yet.
Also hopefully there won't be too much need for posting to this blog. I no longer feel that I have one foot in the grave. I expect I'll have cancer cells in my brain forever, but I'm at least a few paces away from the grave at this moment.
I still have to overcome the after effects of surgery: my dodgy vision and balance problems . The number of times I've had to correct typos just to write this post is a reminder that I'm not fully recovered yet. So this may not be the last post to this blog. Not just yet.
4 September - Return from London
Just returned from a very nice break in London. Considering that at one point I felt so poorly that I doubted whether I would be able to go, The trip went without problems. The dexomethasone steroids made me feel a lot better. My balance improved but only by a little. We took advantage of disabled facilities to borrow a wheelchair in most of the places we visited. I was a bit reluctant to do this at first as I was aware that none of the people I know of who began using a wheelchair are still here today, but it did make things easier.
Whilst we were away we received an appointment at the hospital for a scan tomorrow afternoon (Thursday.). This is for a CT scan not the MRI scan we were expecting.Ours is no to reason why. As long as it shows what it needs to.
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| At the Victoria and Albert Museum |
20 June - Cold turkey
Finished the course of medication for the shingles. I haven't noticed any reduction of the rash but there don't appear to be any new blisters. Fingers crossed.
In the meantime Olga has been doing some research into why I have been feeling so lousy since giving up the steroids. She found that after effects of coming off dexamethazone - such as stiff and aching joints and muscles, loss of appetite, weight gain and tiredness - are a common complaint on cancer forums. Some people have been unable to give up the drug at all.
The best way to give up dexamethasone seems to be to decrement the dose by microscopic amounts such as a quarter of a tablet every few days so that the body doesn't notice. We were told by my oncologist to reduce the dose from 2mg to 1/2mg in just a few weeks which appears to be just too fast, so I've been suffering from "cold turkey" withdrawal symptoms.
We have just managed to get my weight down below 100 kilos. By sticking rigidly to a small helpings, no snacks, no cakes or desserts rule it seems to be going down by an average 100g a day. If I can keep this up then hopefully I'll eventually start to notice a difference.
In the meantime Olga has been doing some research into why I have been feeling so lousy since giving up the steroids. She found that after effects of coming off dexamethazone - such as stiff and aching joints and muscles, loss of appetite, weight gain and tiredness - are a common complaint on cancer forums. Some people have been unable to give up the drug at all.
The best way to give up dexamethasone seems to be to decrement the dose by microscopic amounts such as a quarter of a tablet every few days so that the body doesn't notice. We were told by my oncologist to reduce the dose from 2mg to 1/2mg in just a few weeks which appears to be just too fast, so I've been suffering from "cold turkey" withdrawal symptoms.
We have just managed to get my weight down below 100 kilos. By sticking rigidly to a small helpings, no snacks, no cakes or desserts rule it seems to be going down by an average 100g a day. If I can keep this up then hopefully I'll eventually start to notice a difference.
7 June - Aches and pains
I have been off the steroids (dexamethosone) for over a fortnight now. I would have hoped to be able to report that I was starting to feel more normal but that isn't the case yet. My weight is still hovering somewhere over the 100kg mark. I have a painful left shoulder that gives me hell if I try to raise my left arm too much, though this may be just a sprain and nothing to do with anything else. And I have got aches and pains in my knees and hips which often make it more than I can manage to get out of a low chair without assistance. That probably isn't everything that's bugging me at the moment, but it's enough.
Olga thinks a lot of these symptoms are cold turkey (withdrawal symptoms) from coming off the dexamethasone. She has done a lot of research on the internet and thinks that I should have taken longer and made much smaller steps coming down from the 4mg I had been on for months. But we did what we were told, or tried to.
I hope we will see some improvements soon. It would make an enormous difference to my morale to be able to walk reasonable distances (at least a couple of miles) again.
Olga thinks a lot of these symptoms are cold turkey (withdrawal symptoms) from coming off the dexamethasone. She has done a lot of research on the internet and thinks that I should have taken longer and made much smaller steps coming down from the 4mg I had been on for months. But we did what we were told, or tried to.
I hope we will see some improvements soon. It would make an enormous difference to my morale to be able to walk reasonable distances (at least a couple of miles) again.
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.
27 April - The doctor calls
Well that wasn't too successful. It seems that going from 1mg of dexamethasone (half a tablet) to nothing was too big a step for my body. I awoke with a mild headache and terrible balance problems. Olga took my blood pressure using our Omron blood pressure monitor and it was quite low, which is unusual for me.
Olga thought we should speak to a doctor but when we phoned the GP surgery we could not get an appointment until next Tuesday. We could go to the surgery at 5.30pm and wait to be seen as an emergency (!). Then I remembered the nurses at the radiotherapy and oncology department in Carlisle had given us a number we could call for advice if needed. Eventually we were phoned back by the consultant who advised us to increase the steroid dose to 0.5mg (a quarter of a tablet). But we were still advised to see a doctor.
About an hour later the phone rang. It was the GP surgery. Carlisle had been on the phone to them and a doctor was going to come out and visit us. Any of my readers familiar with the NHS will know that winning the lottery is easier than getting GPs to make house calls. The doctor's verdict was that the patient was OK but reducing the dosage of steroids can be tricky. We would carry on taking a quarter of a tablet a day and make an appointment at the surgery next week for a blood test.
Because the piece of dexamethasone tablet seemed so small I thought I could still give up the lansoprazole capsules which protect my stomach from the steroid. That was a mistake. I felt that quarter tablet on its entire journey through my system! So it looks like I'll have to carry on taking lansoprazole and dexamethasone for the time being.
Olga thought we should speak to a doctor but when we phoned the GP surgery we could not get an appointment until next Tuesday. We could go to the surgery at 5.30pm and wait to be seen as an emergency (!). Then I remembered the nurses at the radiotherapy and oncology department in Carlisle had given us a number we could call for advice if needed. Eventually we were phoned back by the consultant who advised us to increase the steroid dose to 0.5mg (a quarter of a tablet). But we were still advised to see a doctor.
About an hour later the phone rang. It was the GP surgery. Carlisle had been on the phone to them and a doctor was going to come out and visit us. Any of my readers familiar with the NHS will know that winning the lottery is easier than getting GPs to make house calls. The doctor's verdict was that the patient was OK but reducing the dosage of steroids can be tricky. We would carry on taking a quarter of a tablet a day and make an appointment at the surgery next week for a blood test.
Because the piece of dexamethasone tablet seemed so small I thought I could still give up the lansoprazole capsules which protect my stomach from the steroid. That was a mistake. I felt that quarter tablet on its entire journey through my system! So it looks like I'll have to carry on taking lansoprazole and dexamethasone for the time being.
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.
10 April - A setback
Bit of a setback to my hopes of coming off the steroids. We had got down to 1mg (half a tablet) but I had a headache last night which persisted until morning. It went after I took one dexamethasone (2mg) after breakfast. So it looks as if I'll need to keep taking them for the time being.
3 April - Weight gain
Had a shock when I stood on the bathroom scales this morning. My weight was more than 96 kilos! That's the heaviest I've even been. No wonder walking seems such an effort these days.
Before I started the cancer treatment my weight was around 88 kilos. Even that was a couple of kilos more than I'd really like it to be. But it has slowly increased over the ensuing months. "It's the steroids" says everyone, offering the hope that my weight (and other treatment side effects) will eventually get back to normal once the treatment is over. My oncologist has already said that we can start reducing the dose and eventually stop the dexamethazone. I'm half way there but success depends on not experiencing any headaches or other symptoms - if I do then I have to go back to 4mg a day.
I became concerned about my weight after looking at my feet and noticing that they were puffy and my ankles were swollen. Olga examined them and concluded that it is water retention. I did some Googling and "swollen ankles after chemotherapy" appeared to be a not uncommon search term. The consensus seemed to be that it is not something to worry too much about and that it will eventually clear up of its own accord. But one woman's oncologist had prescribed a diuretic. I wasn't keen on another trip to the doctor's surgery nor on taking yet another tablet so we have decided to try spilanthes - a herbal remedy that has diuretic properties which Olga already has in her medicine cabinet. We'll see how that goes.
Before I started the cancer treatment my weight was around 88 kilos. Even that was a couple of kilos more than I'd really like it to be. But it has slowly increased over the ensuing months. "It's the steroids" says everyone, offering the hope that my weight (and other treatment side effects) will eventually get back to normal once the treatment is over. My oncologist has already said that we can start reducing the dose and eventually stop the dexamethazone. I'm half way there but success depends on not experiencing any headaches or other symptoms - if I do then I have to go back to 4mg a day.
I became concerned about my weight after looking at my feet and noticing that they were puffy and my ankles were swollen. Olga examined them and concluded that it is water retention. I did some Googling and "swollen ankles after chemotherapy" appeared to be a not uncommon search term. The consensus seemed to be that it is not something to worry too much about and that it will eventually clear up of its own accord. But one woman's oncologist had prescribed a diuretic. I wasn't keen on another trip to the doctor's surgery nor on taking yet another tablet so we have decided to try spilanthes - a herbal remedy that has diuretic properties which Olga already has in her medicine cabinet. We'll see how that goes.
30 January - Prunes and laxatives
I'm sure you are all happy to know that I survived the start of my fourth chemotherapy cycle without suffering chronic constipation. :) This time we were prepared. Besides my usual prunes for breakfast we stepped up the laxative tablets to three a day, plus a dish of beetroot before lunch and dinner. We also had more liquid meals such as borscht or stew. I don't think I can look at another beetroot - not for another 4 weeks anyway. As suggested by the doctor, I also took only one anti-sickness tablet per day instead of two.
The chemo still makes me more than usually lethargic (or just plain lazy) but it was a fine day so this afternoon I hauled ass and Olga and I walked to Harris Park and back - the best part of a couple of miles. This seems to be about my limit these days, and I'm still very sweaty by the end of it.
The higher mountains of the Lake District were iced white with snow. Looking across at them I felt rather sad: I doubt if I will ever regain enough fitness to walk the fells again.
I don't understand why I feel so physically weak when it was only my brain that has had surgery, but I believe it may be down to the dexomethasone, a cortico-steroid, which I take to control inflammation of the brain that might otherwise cause headaches or seizures. These steroids are completely different from the kind taken by body-builders and cause muscle wastage (and many other harmful effects, if you read the packet.) So I have lost fitness built up over many years that will probably take years to regain, if ever.
The chemo still makes me more than usually lethargic (or just plain lazy) but it was a fine day so this afternoon I hauled ass and Olga and I walked to Harris Park and back - the best part of a couple of miles. This seems to be about my limit these days, and I'm still very sweaty by the end of it.
The higher mountains of the Lake District were iced white with snow. Looking across at them I felt rather sad: I doubt if I will ever regain enough fitness to walk the fells again.
I don't understand why I feel so physically weak when it was only my brain that has had surgery, but I believe it may be down to the dexomethasone, a cortico-steroid, which I take to control inflammation of the brain that might otherwise cause headaches or seizures. These steroids are completely different from the kind taken by body-builders and cause muscle wastage (and many other harmful effects, if you read the packet.) So I have lost fitness built up over many years that will probably take years to regain, if ever.
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