Hi All,
Sorry for the lack of a post until now - I've had a busy week and weekend.
It is now past my bedtime thanks to an epic Andy Murray match at Wimbledon. I really thought he was going to lose it in true British tradition, but good on him for coming through. Still not sure he can win it, but it's definitely more interesting whilst there is still a Brit in it, so let's see how far he can get!
I guess you've figured out already by the lack of a post that I didn't start the chemo last week, but instead started today.
I've been into Huddersfield hospital this morning as an outpatient and met my oncologist again, followed by a chest X-Ray to see if the lung tumours show up on that. Then I went up to the ward and sat in a chair for 5 hours (not easy when you've got a bum as bony as mine at the moment!) whilst I had various infusions. Started with 30 minutes of saline, followed by 3 hours of Taxol (had a kip during that bit) - another 30 minutes of saline, then a 10 minute super-fast infusion of the Carboplatin. As I said before, no PICC line this time, just a cannula in the back of the hand, and a relatively easy process all round.
I felt fine during the infusion, and I've felt fine since I came out so far, but the side effects will start to develop over the next week or so, so we'll wait and see.
I've come home with a mountain of tablets and potions for nausea and mouth ulcers, so I'm on a complex regime for a while, with some 4x a day, some 2x a day, some 1x and one "reducing" so starts 3x then reduces to 2x and finally 1x. Lots to keep track of! :(
Great to see the chaps from my former work (SCT International) on Saturday - good to catch up as we missed our annual reunion in December. And good to have another rehearsal with the band yesterday. Tiring as usual, but good for the spirits. I had a really low day on Friday (physically, not mentally), so it was good to have a couple of upbeat days in the sunshine to follow.
No more daylight fox sightings, but he (they?) are definitely coming overnight to gobble up the leftovers Vanda is leaving out. We even had a hedgepig helping himself the other evening too, so quite a menagerie building up, what with the sighting of rabbits in my "woodland" too!
Better go to bed now, but I'll be trying to post more frequently now that I've started the chemo. Exciting week to come, what with the chemo and another [shorter] trip to London on Thursday/Friday. I've kept up the 5-star theme, you'll be glad to know, and I'm only staying at the Ritz on Thursday night (hark at him!). Not sure its my sort of place (jacket and tie in the bar and restaurant for example), but worth doing once I suppose, and not actually as ridiculously expensive as I thought!
See you soon,
Col x
Monday 29 June 2009
Monday 22 June 2009
Monday 22nd June 2009
I had a call with my oncologist today and I am definitely going ahead with chemo.
She has taken a second opinion from a specialist in London and they have decided to change the chemo that I will have, although most of the details will be the same. I am still having the Etoposide which will make my hair fall out, but instead of the Cisplatin I had last time, I will be having a combination of two drugs called Carboplatin and Taxol. This means that I don't have any overnight stays in hospital - two of the drugs are given in a morning session via IV and the other one will be in tablet form for ten days afterwards.
Side effects are generally the same, except possible numbness in feet and hands, but less nausea to make up for it! Same regime - two three-week cycles followed by a scan then repeat if appropriate. Apparently this is a reasonably common drug combination in the US, but not used so often over here. Either way it is a different combination to what I had before, so fingers crossed that it does some good!
Should be starting either this Thursday or next Monday - I'll let you know probably tomorrow.
I've also changed my nausea drug regime again today after a visit from the Macmillan nurse. The injections I've been having of the Haloperidol didn't really make any difference, so I've now reverted to the Metroclopramide which was the first anti-emetic I had when I came out of hospital. The consultant thinks that as my symptoms have changed (from general nausea to actually being sick) that it is worth retrying the Metroclopramide because it has other benefits too (makes food go down faster for example). We'll see how I get on. I'm being visited by the Macmillan nurse every Monday now, so we can keep trying different things.
In other news, we are getting visited multiple times a day by an urban fox, in broad daylight. I've seen it for the last three days, and just now it spent about 10 minutes sniffing around the garden. I managed to go and get my camera and take a couple of quick snaps (not great ones unfortunately) before he sloped off, but he's a fine fox indeed! Vanda has just put some food out for him as he's looking a bit skinny we thought. :)
Anyway, enough for now, see you later,
C x
She has taken a second opinion from a specialist in London and they have decided to change the chemo that I will have, although most of the details will be the same. I am still having the Etoposide which will make my hair fall out, but instead of the Cisplatin I had last time, I will be having a combination of two drugs called Carboplatin and Taxol. This means that I don't have any overnight stays in hospital - two of the drugs are given in a morning session via IV and the other one will be in tablet form for ten days afterwards.
Side effects are generally the same, except possible numbness in feet and hands, but less nausea to make up for it! Same regime - two three-week cycles followed by a scan then repeat if appropriate. Apparently this is a reasonably common drug combination in the US, but not used so often over here. Either way it is a different combination to what I had before, so fingers crossed that it does some good!
Should be starting either this Thursday or next Monday - I'll let you know probably tomorrow.
I've also changed my nausea drug regime again today after a visit from the Macmillan nurse. The injections I've been having of the Haloperidol didn't really make any difference, so I've now reverted to the Metroclopramide which was the first anti-emetic I had when I came out of hospital. The consultant thinks that as my symptoms have changed (from general nausea to actually being sick) that it is worth retrying the Metroclopramide because it has other benefits too (makes food go down faster for example). We'll see how I get on. I'm being visited by the Macmillan nurse every Monday now, so we can keep trying different things.
In other news, we are getting visited multiple times a day by an urban fox, in broad daylight. I've seen it for the last three days, and just now it spent about 10 minutes sniffing around the garden. I managed to go and get my camera and take a couple of quick snaps (not great ones unfortunately) before he sloped off, but he's a fine fox indeed! Vanda has just put some food out for him as he's looking a bit skinny we thought. :)
Anyway, enough for now, see you later,
C x
Wednesday 17 June 2009
Wednesday 17th June 2009
Hi Everyone,
I've just got back from meeting my new oncologist - a very nice lady!
She confirmed all the details that I knew already, and discussed all the various treatment options.
It seems that as the cancer has proved to be extremely aggressive, the only appropriate treatment is further chemotherapy. There are other options like targeted radiotherapy, but these are more for slow-growing cancers and wouldn't work quickly enough in my case.
I was given the option of not having any treatment and just focusing on managing my symptoms, but I am keen to feel like I am fighting this, so I have decided to go for the chemo.
It will be different from last time, although it will still include the Cisplatin (Platinum) that I had last time. This time though, instead of the 5FU, I will have a secondary drug called Etoposide. It is hoped that this might make the tumour more receptive to the effects of the Cisplatin. I have been warned that the chances of this chemo having a dramatic effect are quite slim - about 20% - but hopefully it can at least slow the growth.
I don't have to have a PICC line this time - all the drugs will be via a cannula in my arm or hand. I will have the same overnight stay in hospital to get the Cisplatin and two days worth of Etoposide, then I have an extra day as an outpatient to get the third day's dose of Etoposide as a one hour infusion. So no pump attached like last time and less inconvenience than with the PICC line.
Each cycle is these three days, followed by 18 days rest, so a three-week cycle as before. The plan is for two cycles followed by another scan, and if it looks like it is working, another two cycles followed by another scan and possibly even a fifth and sixth cycle although these are less likely.
For those mickey-takers amongst you, you finally get your day, as I will definitely lose my hair this time with this drug! :)
Other things we discussed during the meeting were my prognosis. She confirmed that we were looking at 6 months to a year if the chemo doesn't work, but if it does work, then who knows.
She also warned me off the Maitake mushroom extract, as these extracts have to be dealt with by the liver, and given the cancer in the liver, she told me that it was probably not wise to give it extra work to do, which is a shame as that only leaves me the chemo to focus on - however, at least I have some options.
Overall then, no surprises, but no particularly good news either. I'll probably start the chemo in the next week or so, and we'll just have to hope that I respond to that positively.
On a lighter note, a good fun weekend was had by all in the sun. It was Le Mans 24-hour weekend, and instead of going to the race this year, we all met up here and did it in a little more luxury than we usually do in the Le Mans campsite. We rigged up a projector and a screen for the race and used my big telly for racing games on the XBox. BBQ in the sun and lots of beer (or 2 cans of cider in my case) topped off the excellent weekend. Some photos:
Really, really big screen telly! Amazing what you can do with a projector and a sheet!
Craig racing an Audi R10 round Le Mans on the smaller telly!
Barbie time, and me with my everlasting can of Woodpecker!
Everyone by Eric's RV and Craig's Porch (sorry, Porsche)
I have spent the last few days recovering, but it was worth the effort - great fun!
So that's it for now - more soon,
Cheers,
Colin
I've just got back from meeting my new oncologist - a very nice lady!
She confirmed all the details that I knew already, and discussed all the various treatment options.
It seems that as the cancer has proved to be extremely aggressive, the only appropriate treatment is further chemotherapy. There are other options like targeted radiotherapy, but these are more for slow-growing cancers and wouldn't work quickly enough in my case.
I was given the option of not having any treatment and just focusing on managing my symptoms, but I am keen to feel like I am fighting this, so I have decided to go for the chemo.
It will be different from last time, although it will still include the Cisplatin (Platinum) that I had last time. This time though, instead of the 5FU, I will have a secondary drug called Etoposide. It is hoped that this might make the tumour more receptive to the effects of the Cisplatin. I have been warned that the chances of this chemo having a dramatic effect are quite slim - about 20% - but hopefully it can at least slow the growth.
I don't have to have a PICC line this time - all the drugs will be via a cannula in my arm or hand. I will have the same overnight stay in hospital to get the Cisplatin and two days worth of Etoposide, then I have an extra day as an outpatient to get the third day's dose of Etoposide as a one hour infusion. So no pump attached like last time and less inconvenience than with the PICC line.
Each cycle is these three days, followed by 18 days rest, so a three-week cycle as before. The plan is for two cycles followed by another scan, and if it looks like it is working, another two cycles followed by another scan and possibly even a fifth and sixth cycle although these are less likely.
For those mickey-takers amongst you, you finally get your day, as I will definitely lose my hair this time with this drug! :)
Other things we discussed during the meeting were my prognosis. She confirmed that we were looking at 6 months to a year if the chemo doesn't work, but if it does work, then who knows.
She also warned me off the Maitake mushroom extract, as these extracts have to be dealt with by the liver, and given the cancer in the liver, she told me that it was probably not wise to give it extra work to do, which is a shame as that only leaves me the chemo to focus on - however, at least I have some options.
Overall then, no surprises, but no particularly good news either. I'll probably start the chemo in the next week or so, and we'll just have to hope that I respond to that positively.
On a lighter note, a good fun weekend was had by all in the sun. It was Le Mans 24-hour weekend, and instead of going to the race this year, we all met up here and did it in a little more luxury than we usually do in the Le Mans campsite. We rigged up a projector and a screen for the race and used my big telly for racing games on the XBox. BBQ in the sun and lots of beer (or 2 cans of cider in my case) topped off the excellent weekend. Some photos:
Really, really big screen telly! Amazing what you can do with a projector and a sheet!
Craig racing an Audi R10 round Le Mans on the smaller telly!
Barbie time, and me with my everlasting can of Woodpecker!
Everyone by Eric's RV and Craig's Porch (sorry, Porsche)I have spent the last few days recovering, but it was worth the effort - great fun!
So that's it for now - more soon,
Cheers,
Colin
Thursday 11 June 2009
Thursday 11th June 2009
Hi All,
Firstly, thanks for all the good wishes in texts, emails, phone calls and blog posts - I much appreciate it! And thanks Flo for the tribute during your 5k run - well done you for finishing! Can I count that as my marathon attempt now? :)
This is an extra post because I might not be available to post on Sunday (we'll see), and I also wanted to keep you updated on my London trip.
I've just got home, and it's been a great success. I've felt ok nearly the whole time (had to cough up my pudding in the loo at the event this afternoon because I ate too much, but no associated nausea - sorry if that was too much info! :)
Everything started particularly well whenwhen I got to my hotel on Tuesday night and was unexpectedly upgraded to a nice 12th floor suite - I must have looked sick or something! Nice view out of the window too:
That's the Tower of London and Tower Bridge in case you don't recognise it!
Main presentation yesterday went down very well and I slipped back into presentation mode without a second thought, even though it is about 8 months now since I gave one (wow, it doesn't seem that long!) - I really enjoyed it! All the smaller sessions went well too and I didn't suffer at all. I was quite tired yesterday, and it didn't help that I overslept because I set my alarm for PM instead of AM (D'Oh!), but I managed to get to the event on time by skipping breakfast so all was well, and I had plenty of opportunity to sit down, so the tiredness didn't affect me too much.
Today was nice and easy too. Sorry Jen and Adele, I was at a different event from the one you were at - I'm sure Andy told you though. Shame we didn't meet up. Maybe if Elspeth's idea of a Mercury reunion in July comes off, and I'm not in the middle of some treatment, we can catch up then?
Good to see some folks today and yesterday and to have a drink with some of you last night - I can't believe I had a half of cider and declined the offer of a curry - how times change! :(
All in all a very good couple of days, and encouraging for the prospect of getting out and about a bit more often.
Will post again on Wednesday to report on the oncologist meeting, if not before.
Cheers,
Colin
That's the Tower of London and Tower Bridge in case you don't recognise it!Main presentation yesterday went down very well and I slipped back into presentation mode without a second thought, even though it is about 8 months now since I gave one (wow, it doesn't seem that long!) - I really enjoyed it! All the smaller sessions went well too and I didn't suffer at all. I was quite tired yesterday, and it didn't help that I overslept because I set my alarm for PM instead of AM (D'Oh!), but I managed to get to the event on time by skipping breakfast so all was well, and I had plenty of opportunity to sit down, so the tiredness didn't affect me too much.
Today was nice and easy too. Sorry Jen and Adele, I was at a different event from the one you were at - I'm sure Andy told you though. Shame we didn't meet up. Maybe if Elspeth's idea of a Mercury reunion in July comes off, and I'm not in the middle of some treatment, we can catch up then?
Good to see some folks today and yesterday and to have a drink with some of you last night - I can't believe I had a half of cider and declined the offer of a curry - how times change! :(
All in all a very good couple of days, and encouraging for the prospect of getting out and about a bit more often.
Will post again on Wednesday to report on the oncologist meeting, if not before.
Cheers,
Colin
Sunday 7 June 2009
Sunday 7th June - Bad News
Hi Everyone,
There is no sugar coating this unfortunately - the results of my scan have shown that the nausea is the least of my problems.
Against all expectations the cancer has returned already and spread to my liver and lungs (plus an area around my stomach). I have multiple small tumours which are not operable, so my status is now officially terminal.
I have a meeting with a new oncologist a week on Wednesday. She is a specialist in neuro-endocrine tumours, and it will be then that we decide whether further chemo with different drugs from last time is a sensible idea or not. I feel that it will be worth it, just so that I can feel that I am fighting the disease, but we'll have to wait and see. It seems from an unofficial conversation a friend had with another neuro-endocrine expert that there may be several courses open to me, so here's hoping they can do something to slow the growth.
Unfortunately it seems that the idea that the neuro-endocrine tumour type should be slow-growing has proved to be inaccurate for this particular tumour, and in fact it has been particularly agressive. My last scan 4 months ago was clear and now there are multiple recurrances. If chemo or any other means I try cannot regulate the growth, it would seem that my prognosis is pretty poor. No-one has offered any timescale at all, but I have to be realistic and look at Jade Goody as a worst-case example - we could be talking 6 months or a year. That said, if we manage to find a treatment that helps, it could be considerably longer.
I'm also pursuing a less 'clinical' treatment which is a Japanese mushroom extract called "Maitake" - there is no clinical evidence of success, but there does seem to be some good case data, and unlike a lot of these "alternate" therapies, very little disparaging information. A friend of Vanda's used it when she had cancer and swears that it helped considerably reduce the size of her tumour. It is supposed to work especially well in combination with chemo, so I guess its worth a try.
I'm obviously somewhat devastated about the news, but equally I did expect this at some point, so I'm mentally pretty well prepared at the moment. Of course I've already thought about the consequences should this day come, when I was first diagnosed and before I knew if it was curable or not, so I've had the chance to think of things I might want to do in the time I have. I feel pretty fulfilled to be honest, so the list is pretty small. The one thing that has changed is that if I go anywhere, I intend to go 5-star all the way! :)
I want to get out and about a bit to see some people, but I guess that will depend on what treatment I have and how that impacts me, so we'll have to wait and see how things progress.
I have felt a bit breathless the last couple of days - paranoia says that it is to do with the lung tumours, but I'm hoping its just that I didn't sleep too well the other night and I'm very short of energy. Strangely, I am generally sleeping fine, and since I heard the news on Tuesday night, it has not really had any effect on my sleep.
I fully intend to keep up business as usual until symptoms say otherwise, so I'm going to carry on working as before and I'm still doing this trip to London this week to test my ability to survive away from home (and also so I can catch up with some people that I only see rarely). I've also had a band rehearsal today - quite hard due to my breathlessness, but good fun and something I want to keep up as long as I can.
Sorry for this shock news out of the blue, but rest assured that I'm handling it well mentally, and I don't intend to let it worry me until I've got something concrete to worry about!
I'm not expecting much in the way of news until I see the oncologist, but depending on what transpires, I may start to increase the frequency of the blog again - I'll let you know.
Ho hum,
Col. x
There is no sugar coating this unfortunately - the results of my scan have shown that the nausea is the least of my problems.
Against all expectations the cancer has returned already and spread to my liver and lungs (plus an area around my stomach). I have multiple small tumours which are not operable, so my status is now officially terminal.
I have a meeting with a new oncologist a week on Wednesday. She is a specialist in neuro-endocrine tumours, and it will be then that we decide whether further chemo with different drugs from last time is a sensible idea or not. I feel that it will be worth it, just so that I can feel that I am fighting the disease, but we'll have to wait and see. It seems from an unofficial conversation a friend had with another neuro-endocrine expert that there may be several courses open to me, so here's hoping they can do something to slow the growth.
Unfortunately it seems that the idea that the neuro-endocrine tumour type should be slow-growing has proved to be inaccurate for this particular tumour, and in fact it has been particularly agressive. My last scan 4 months ago was clear and now there are multiple recurrances. If chemo or any other means I try cannot regulate the growth, it would seem that my prognosis is pretty poor. No-one has offered any timescale at all, but I have to be realistic and look at Jade Goody as a worst-case example - we could be talking 6 months or a year. That said, if we manage to find a treatment that helps, it could be considerably longer.
I'm also pursuing a less 'clinical' treatment which is a Japanese mushroom extract called "Maitake" - there is no clinical evidence of success, but there does seem to be some good case data, and unlike a lot of these "alternate" therapies, very little disparaging information. A friend of Vanda's used it when she had cancer and swears that it helped considerably reduce the size of her tumour. It is supposed to work especially well in combination with chemo, so I guess its worth a try.
I'm obviously somewhat devastated about the news, but equally I did expect this at some point, so I'm mentally pretty well prepared at the moment. Of course I've already thought about the consequences should this day come, when I was first diagnosed and before I knew if it was curable or not, so I've had the chance to think of things I might want to do in the time I have. I feel pretty fulfilled to be honest, so the list is pretty small. The one thing that has changed is that if I go anywhere, I intend to go 5-star all the way! :)
I want to get out and about a bit to see some people, but I guess that will depend on what treatment I have and how that impacts me, so we'll have to wait and see how things progress.
I have felt a bit breathless the last couple of days - paranoia says that it is to do with the lung tumours, but I'm hoping its just that I didn't sleep too well the other night and I'm very short of energy. Strangely, I am generally sleeping fine, and since I heard the news on Tuesday night, it has not really had any effect on my sleep.
I fully intend to keep up business as usual until symptoms say otherwise, so I'm going to carry on working as before and I'm still doing this trip to London this week to test my ability to survive away from home (and also so I can catch up with some people that I only see rarely). I've also had a band rehearsal today - quite hard due to my breathlessness, but good fun and something I want to keep up as long as I can.
Sorry for this shock news out of the blue, but rest assured that I'm handling it well mentally, and I don't intend to let it worry me until I've got something concrete to worry about!
I'm not expecting much in the way of news until I see the oncologist, but depending on what transpires, I may start to increase the frequency of the blog again - I'll let you know.
Ho hum,
Col. x
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