One of my readers wrote to me last night to say "do a web search on novocure." I did. It appears to be a new cancer treatment currently undergoing clinical trials in the USA and Europe which is relevant to the treatment of brain tumours as well as other types of cancer.
There are no clinical trials of novocure currently taking place in the UK, however. Furthermore it appears I would fail the inclusion criteria shown on the website. My glioblastoma is neither newly diagnosed nor recurrent and has received other treatment (intensive temozolomide and clomipramine) since diagnosis.
To be honest I would not sign up for a clinical trial even if I did qualify. I have accepted my situation, whatever that turns out to be. At the same time I don't think my life expectancy will be as short as the prognosis I was given last summer. I believe we are beating the bugger at the moment.
I hate being in hospital. I would rather receive the treatment I am currently getting as an outpatient and see out my days in the comfort of my own home than spend much of the time left to me travelling to and from distant hospitals or having to undergo further operations (as I believe would be necessary for novocure which must be physically delivered to the tumour.) I am also given to believe that participants in clinical trials may receive a placebo instead of the drug. I'd rather know that I am receiving treatment.
But it's good to know what options are available. I'm writing this blog not just for myself but for others who learn that they or a friend or relative has a brain tumour and I appreciate all relevant comments.
28 February - The end of chemotherapy!
Today I took the fifth and final 400mg dose of Temozolomide for my fifth and penultimate chemotherapy cycle. At this point in the cycle the concentration of Temo in my body is probably at its highest, with a corresponding negative effect on my energy levels. Today I could hardly haul myself out of my chair. I have spent most of the day sitting and thinking about what I could be doing if only I could find the energy to actually do something.
It would probably be a good idea to wait until I am feeling a bit more lively before doing anything critical. Yesterday I started to work out a circuit layout for stripboard and I drew the microprocessor chip so the rows of pins ran along the copper strips, connecting them all together, instead of at right angles. I threw away the drawing, printed out a new blank template and then proceeded to do the same thing again!
Duh! Sometimes I feel as if I've had a lobotomy.
It would probably be a good idea to wait until I am feeling a bit more lively before doing anything critical. Yesterday I started to work out a circuit layout for stripboard and I drew the microprocessor chip so the rows of pins ran along the copper strips, connecting them all together, instead of at right angles. I threw away the drawing, printed out a new blank template and then proceeded to do the same thing again!
Duh! Sometimes I feel as if I've had a lobotomy.
23 February - Fifth chemotherapy cycle
Just back from a hospital appointment in Carlisle to see the doctor prior to commencing my fifth cycle of chemotherapy.
My blood count was "great" and my scan results were "favourable". Such side effects as I have experienced, like feeling tired and weak in my legs, are "normal". Some side effects may disappear once the chemotherapy is over, but those caused by the radiotherapy are more long term, unfortunately.
The doctor seemed pleased with my progress - always a good sign, I think. Without wishing to tempt fate it would appear that so far, at least, I am "beating the bugger." Or rather, we are beating the bugger, because I'm sure that Olga's devoted care and ensuring I eat a healthy diet with lots of fruit and vegetables is helping me fight the cancer. We're in this together.
My blood count was "great" and my scan results were "favourable". Such side effects as I have experienced, like feeling tired and weak in my legs, are "normal". Some side effects may disappear once the chemotherapy is over, but those caused by the radiotherapy are more long term, unfortunately.
The doctor seemed pleased with my progress - always a good sign, I think. Without wishing to tempt fate it would appear that so far, at least, I am "beating the bugger." Or rather, we are beating the bugger, because I'm sure that Olga's devoted care and ensuring I eat a healthy diet with lots of fruit and vegetables is helping me fight the cancer. We're in this together.
15 February - Rubber legs
Nothing in how I feel has changed since 4 February, hence no posts. For the record, I'm not experiencing the kind of debilitating dehydrating diarrhoea you get with a stomach upset. Just that things are not back to normal in that area. It's something to mention to the doctor when I next see him at the end of next week.
I'm still walking on rubber legs, too, which seems to be a universal complaint of everyone who has had radiotherapy to the brain. It's a bit worrying. My positive outlook has largely been based on the belief that my present condition is only temporary and that once the treatment is over things can only get better. Olga and I hoped to be able to get away for some trips abroad once my immune system recovers from the chemotherapy but I'd need to be fitter than I feel right now to manage it. When one reads of people whose mobility after radiotherapy slowly deteriorates until they are forced to use a wheelchair it's a bit disheartening.
I'm still walking on rubber legs, too, which seems to be a universal complaint of everyone who has had radiotherapy to the brain. It's a bit worrying. My positive outlook has largely been based on the belief that my present condition is only temporary and that once the treatment is over things can only get better. Olga and I hoped to be able to get away for some trips abroad once my immune system recovers from the chemotherapy but I'd need to be fitter than I feel right now to manage it. When one reads of people whose mobility after radiotherapy slowly deteriorates until they are forced to use a wheelchair it's a bit disheartening.
4 February - Diarrhea
If it's not one thing it's another. A week ago I was concerned about getting constipation. Now it's the opposite. Olga thinks the chemo has killed the good bacteria in my gut. I'm eating a lot of home made live yogurt to try to replenish them.
No snow here so I'm still able to get out and about. I do wish my legs didn't feel quite so wobbly though. Olga and I walked into town today to visit the farmer's market and get a few things from Sainsbury's. I felt I needed to sit down in Sainsbury's while Olga went round the shop. I hope my fitness level will improve after the chemo is over.
No snow here so I'm still able to get out and about. I do wish my legs didn't feel quite so wobbly though. Olga and I walked into town today to visit the farmer's market and get a few things from Sainsbury's. I felt I needed to sit down in Sainsbury's while Olga went round the shop. I hope my fitness level will improve after the chemo is over.
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