Had my oncology appointment this week. I have a lovely young oncologist who is super interested in treating lung cancer I am so glad I met him as he fills me with hope.
The headaches I am have been having are unusual however not unheard of. He thinks it's could be the ondansetron (anti sickness med they add to one of the infusions) so we are going to omit it next time. I am quite sensitive to some drugs piriton being one and now we know indomethacin is another!
It won't leave me completely without anti emetic cover as I will still have emend. It's a bit trial an error. I'm also getting a brain scan at the same time as the next CT just to make sure there is nothing else lurking in there! I still have a headache although just mild now and paracetamol seems to now do the trick.
So what's the plan?.....I will have the scans after the next chemo to see if it is working. If it is and I can still tolerate it (that's my body as in blood counts etc) then we will continue with another 2 cycles. I am however having a break of an extra week or so after the second one which is good as I have another charity event - our 'Contemporary Craft Carnival' charity craft fair - to attend! I have put so much work into it I don't want to miss it :) I will then go onto the 'Alimta' maintenance for a bit or for as long as I stay stable.
If it's not working, we can try Afatinib, it's not licenced yet but I can get it via the accelerated access programme. It is known to work very well with people with the EGFR mutation like I have. There is also the option of a clinical trial with a vaccine that is also looking very promising.
Then even better thing is If the chemo is working I still will have these other 2 options further down the line.
He also said that lung cancer in people with the gene mutations is a totally different disease. Most of the advances in treatment are with treating people with the genetic mutations so from being in a very unlucky place I am one of the luckier ones.
There is so much that needs to be done to help everyone with lung cancer and I won't stop anything I am doing until I am not longer able to.
For the rest of this week I am making the most of feeling better, mostly knitting T cosy's and even venturing into town tomorrow with my sister for coffee and cake!
Thursday, 20 June 2013
Monday, 17 June 2013
Exactly 2 weeks
It has been exactly 14 days since they stuck that needle in my hand and I started this new part of the journey.
It has taken exactly that time for me to recover to something resembling 'normality' so today I am writing at a normal speed with more than 2 fingers so will there will probably be lots of errors but that means in some ways I feel back to my normal self :)
Yesterday was the 2nd 'Annual' sponsored walk for Lung Cancer that I have organised. The first one, 10th June 1012 was something I said I wanted to turn into a 'yearly' event (whether I was still here or not) Last year there were about 40 people taking part all wearing our 'yellow' Roy Castle T shirts. We raised around £1,400.
This year, I wasn't quite sure what was going to happen. Because of what has been happening to me I hadn't been promoting it on the run up like I had then previous year - understandably so - but I was determined it was still going ahead. I had been collecting sponsors which mainly came from my old RAF pals who are based all over the place but with the social media we have we all are still in touch. There was also a lovely young lady; Laura Green that until yesterday I hadn't actually met although we had talked and became quite close on Facebook.
Laura is 23, her dad, Al was diagnosed with NSCLC stage 4 about 10 weeks ago. He too had never smoked. Laura saw a comment I gad written on the Roy Castle FB page and contacted me to ask some questions. I wanted to give her and her family some hope as I believe there is hope, I spoke to her dad on the phone and I think he felt reassured. Over the following weeks Al started his chemo and although he hasn't been 'officially' told if it is working or not, he symptoms are less and he is feeling much better. He has just 1 more session to go now.
Laura, wanted to do something to help others like her dad and me and asked me if I was doing the 'dream walk' I told her I had my own walk organised and as she was just 'up the road' in Wolverhampton, why didn't she come and join us on out walk over Cannock Chase.
Well what can I say, she has thrown herself into organising her family and friends to all come and join in. When I turned up to Milford Common yesterday I cried. There were about 100 people, mine and Laura's family and friends all wearing 'Blue' (this years colour) Lung cancer t shirts. Laura's dad Al was there with Dawn his wife and little sister Roberta, Laura's partner Tom and little daughter Gracie so I get to meet them all. Al even walked the whole 5 miles!
My daughter Tanya had baked some fabulous cup cakes with the Roy Castle logo on for everyone to offer a 'donation' for after the walk to go into the charity pot. I have to say, she bakes the best cakes I have ever tasted!..... and she made £70 to add to the pot!
My dad who is 74 did the walk in my place as I still wasn't upto it. What an emotional day, all these people......I think our message is well and truly getting out there. To top it all at the present the total we have raised between us is £3735.13 and there is still sponsor money to come in!
So despite how hard the treatment is I cannot say it isn't worth it!
It has taken exactly that time for me to recover to something resembling 'normality' so today I am writing at a normal speed with more than 2 fingers so will there will probably be lots of errors but that means in some ways I feel back to my normal self :)
Yesterday was the 2nd 'Annual' sponsored walk for Lung Cancer that I have organised. The first one, 10th June 1012 was something I said I wanted to turn into a 'yearly' event (whether I was still here or not) Last year there were about 40 people taking part all wearing our 'yellow' Roy Castle T shirts. We raised around £1,400.
This year, I wasn't quite sure what was going to happen. Because of what has been happening to me I hadn't been promoting it on the run up like I had then previous year - understandably so - but I was determined it was still going ahead. I had been collecting sponsors which mainly came from my old RAF pals who are based all over the place but with the social media we have we all are still in touch. There was also a lovely young lady; Laura Green that until yesterday I hadn't actually met although we had talked and became quite close on Facebook.
Laura is 23, her dad, Al was diagnosed with NSCLC stage 4 about 10 weeks ago. He too had never smoked. Laura saw a comment I gad written on the Roy Castle FB page and contacted me to ask some questions. I wanted to give her and her family some hope as I believe there is hope, I spoke to her dad on the phone and I think he felt reassured. Over the following weeks Al started his chemo and although he hasn't been 'officially' told if it is working or not, he symptoms are less and he is feeling much better. He has just 1 more session to go now.
Laura, wanted to do something to help others like her dad and me and asked me if I was doing the 'dream walk' I told her I had my own walk organised and as she was just 'up the road' in Wolverhampton, why didn't she come and join us on out walk over Cannock Chase.
Well what can I say, she has thrown herself into organising her family and friends to all come and join in. When I turned up to Milford Common yesterday I cried. There were about 100 people, mine and Laura's family and friends all wearing 'Blue' (this years colour) Lung cancer t shirts. Laura's dad Al was there with Dawn his wife and little sister Roberta, Laura's partner Tom and little daughter Gracie so I get to meet them all. Al even walked the whole 5 miles!
My daughter Tanya had baked some fabulous cup cakes with the Roy Castle logo on for everyone to offer a 'donation' for after the walk to go into the charity pot. I have to say, she bakes the best cakes I have ever tasted!..... and she made £70 to add to the pot!
My dad who is 74 did the walk in my place as I still wasn't upto it. What an emotional day, all these people......I think our message is well and truly getting out there. To top it all at the present the total we have raised between us is £3735.13 and there is still sponsor money to come in!
So despite how hard the treatment is I cannot say it isn't worth it!
Friday, 14 June 2013
This is day 10 0f 21.......
It's 10 days now since I had the first IV chemo. This is the first time I feel anything like up to writing anything. I did try to write the first couple of days and that took me so so long, but since then it just got worse and worse.
No one could even prepare you for this. I couldn't even answer a simple question like 'what is your name?' I am by no means a wimp so if I say it is extremely, extremely, extremely hard then I am probably being generous.
I didn't seem to have the typical side effects that would be expected. Apart from extreme fatigue (and there are no words to say how completely debilitating it is) I had no nausea, I was able to eat albeit it very very small portions, even if is a a biscuit on the hour, small bowl of soup, (we are talking a few tables spoons here) small bowl cereals - half the amount you get in one of those variety boxes - something to try and keep a bit of strength and keep nutrition going in. The difficulty is trying to drink to keep hydrated and that is really important. The cisplatin can be lethal to your kidneys You need in excess of 3 litres ideally. It is so difficult when you don't feel thirsty, only sips will do as you cannot 'gulp' it down. No other drink tasted of anything, there was no enjoyment what so ever. I couldn't eve taste a cup of coffee until yesterday. And then because you are drinking you need to pee! Just when you are so exhausted you could just fall asleep you have to get up!
My main problem has been the headache from hell! Nothing would take it away and I mean nothing. I hadn't slept, relaxed or had any 'let up' in 9 days. To start with we thought it may be the anti sickness drugs as they can do that to you, but when it continued 4 days after they stopped, knew it maybe something else. I at this point though couldn't have even told you my name so try explaining to someone else what was happening to me!!!!!
Eventually after trying the typical pain relief, -paracetamol, diclofenac etc called chemo until who said to get GP out. I got prescribed Indomethacin. All this time the headache was going between 5/10 and 10/10. The Indomethacin took it to 5 but sent me psychotic, delirious rambling and talking utter tosh! Not only that I became barely rousable, So much so Paul had to call for an ambulance at 5am on Wednesday. My blood pressure had also dropped to 80/40.
It seems I may be particularly sensitive to some of the drugs (not the chemo as such!) the other things they give you to help with the effects and side effects of the chemo. I ended up with morphine for the headaches and diazepam to try and help me settle.
Yesterday I had a period with no headache, and when I did have one it was only about a 2-3/10. Today I had a mild one but it has now gone.
Now I am feeling a little more 'normal' (normal with a bad hangover and still exhausted that is) I realise that this is going to be hell of a lot harder that I/we could ever have imagined. This is day 10 of 21. I still couldn't go out of the house, my hair needs washing, I have neither the incline or feel the need. I would like to just feel 'normal' no frills, just normal.
This IS day 10 of 21.....then we have to do it all again......
No one could even prepare you for this. I couldn't even answer a simple question like 'what is your name?' I am by no means a wimp so if I say it is extremely, extremely, extremely hard then I am probably being generous.
I didn't seem to have the typical side effects that would be expected. Apart from extreme fatigue (and there are no words to say how completely debilitating it is) I had no nausea, I was able to eat albeit it very very small portions, even if is a a biscuit on the hour, small bowl of soup, (we are talking a few tables spoons here) small bowl cereals - half the amount you get in one of those variety boxes - something to try and keep a bit of strength and keep nutrition going in. The difficulty is trying to drink to keep hydrated and that is really important. The cisplatin can be lethal to your kidneys You need in excess of 3 litres ideally. It is so difficult when you don't feel thirsty, only sips will do as you cannot 'gulp' it down. No other drink tasted of anything, there was no enjoyment what so ever. I couldn't eve taste a cup of coffee until yesterday. And then because you are drinking you need to pee! Just when you are so exhausted you could just fall asleep you have to get up!
My main problem has been the headache from hell! Nothing would take it away and I mean nothing. I hadn't slept, relaxed or had any 'let up' in 9 days. To start with we thought it may be the anti sickness drugs as they can do that to you, but when it continued 4 days after they stopped, knew it maybe something else. I at this point though couldn't have even told you my name so try explaining to someone else what was happening to me!!!!!
Eventually after trying the typical pain relief, -paracetamol, diclofenac etc called chemo until who said to get GP out. I got prescribed Indomethacin. All this time the headache was going between 5/10 and 10/10. The Indomethacin took it to 5 but sent me psychotic, delirious rambling and talking utter tosh! Not only that I became barely rousable, So much so Paul had to call for an ambulance at 5am on Wednesday. My blood pressure had also dropped to 80/40.
It seems I may be particularly sensitive to some of the drugs (not the chemo as such!) the other things they give you to help with the effects and side effects of the chemo. I ended up with morphine for the headaches and diazepam to try and help me settle.
Yesterday I had a period with no headache, and when I did have one it was only about a 2-3/10. Today I had a mild one but it has now gone.
Now I am feeling a little more 'normal' (normal with a bad hangover and still exhausted that is) I realise that this is going to be hell of a lot harder that I/we could ever have imagined. This is day 10 of 21. I still couldn't go out of the house, my hair needs washing, I have neither the incline or feel the need. I would like to just feel 'normal' no frills, just normal.
This IS day 10 of 21.....then we have to do it all again......
Saturday, 8 June 2013
Day 4 - IV chemo
Finally remembered my password to log bag in and write lol.
This is now day 4 following the first IV chemo. Yesterday was probably the worst day so far, The worse you feel the less you can describe it. I couldn't do a thing yesterday although I did brush my hair for the first time and non came out! Think of your worst ever hangover and x it by about 50, then you may get the idea. Think of that lasting 4 days with no let up.Think of your head being in a vice and a 5/10 headache being bliss! Think also that this is NO guarantee. If I have- like they say a 4-6 out of 10 chance of this working, it also means that the odds are 4-6 out of 10 of it not working. 50%!!!
I also discovered that adding lemon to the jugs of water you have to drink helps it go down and yesterday I reckon I forced down over 3 litres! It didn't really help with the headache but I know I helps overall!
This is one major learning curve that no one can prepare you for so I am going to share all the things I am finding out. You have to eat, but try to make it very little and hourly/2 hourly.
Big portions ( and that's probably a very small portion in the ideal world) if very off putting, I have found a piece of toast with smooth peanut butter works well and I can enjoy the taste and it is quite settling on the tummy.. I have had a very small bowl of cereal when I get up with some nice cold milk as that seems to help with the indigestion, can't drink coffee ( just no taste for it, and yes I tried it) so I am having a hot water with lemon in it instead. Lunch has been home made veg soup, with as many veg possible to cram in, only very small bowl though at the mo. Trying to make sure I don't get constipated as that's a side effect of the drugs too, so far so good.
I've also nibbled on a ginger biscuit and been eating fruit salad chopped right up with a drop of maple syrup on it. I've even been eating a couple of squares of chocolate! If I don't lose weight on this diet there is something wrong lol. I did however - and I can't believe I did - try and bank a few 1lbs before hand eating big bars of chocolate just in case I really couldn't eat/keep anything down and find I had no 'energy' reserve!
I know there are many people out there going through this and I have to hold my hands up to each and everyone of them, you are all very very brave, If you want to LIVE you have no choice. I cannot understand anyone who would knowingly take their lives for granted and think that 'it won't happen to you' ......it might...... putting yourself at risk is too stupid for me to comprehend. I know there is an 'addiction' but for me my addiction to 'life' and those I love far out way's any other need I have. It's not only you, it's your family watching you have to go through it and feel helpless, I could do that to them if I had a choice.
Thursday, 6 June 2013
Day 2
This is now the second morning....It is taking all my energy to write this but I feel it has to be done and I'm not going to sugar coat it.
I cannot explain fully how I feel, It isn't even a case of getting a 'good night's sleep' I feel I've had every single bit of energy zapped out of me, I feel sick, I have the headache from HELL that nothing will take away, I don't know how to get comfortable, I am so tired but can't relax because of the headache. I am supposed to drink plenty but that makes me feel more sick but if I don't my kidneys will suffer the toxic effects of the chemo. Subsequently I need the loo frequently. And yes, just as I start to drop off I have to get up and go. I haven't got much of an appetite but am trying to eat simple things little and often but that just adds to the viscous circle. GRRRRRRRRRRRRRRRRR
I hope all the smokers out there are reading this, it makes me so angry that you all know the risks yet seem to be oblivious??????? I did nothing to get this, shame on you. If you don't care about yourselves please have some consideration for your family that could have to witness this, IT IS NOT PLEASANT! Ask Paul!
I have never felt so ill in all my life, I have got up to 4 go's at this, after the second one I will have a scan to see what's happening The results of that and how me and my body are handling things will decide on whether I get the other 2 go's. I have a 4-6 chance out of 10 of this working an d even then that is NOT a cure it's just to buy me some more time.
Those of you who know me know how positive I have been about this so far but I can honestly say at the moment I can fully understand why people would opt to stop treatment. The only thing that is keeping me going and will make me want to go the next round is the chance it will work and the fact this won't last for more than a week.
I hope I can write something more uplifting tomorrow.
I cannot explain fully how I feel, It isn't even a case of getting a 'good night's sleep' I feel I've had every single bit of energy zapped out of me, I feel sick, I have the headache from HELL that nothing will take away, I don't know how to get comfortable, I am so tired but can't relax because of the headache. I am supposed to drink plenty but that makes me feel more sick but if I don't my kidneys will suffer the toxic effects of the chemo. Subsequently I need the loo frequently. And yes, just as I start to drop off I have to get up and go. I haven't got much of an appetite but am trying to eat simple things little and often but that just adds to the viscous circle. GRRRRRRRRRRRRRRRRR
I hope all the smokers out there are reading this, it makes me so angry that you all know the risks yet seem to be oblivious??????? I did nothing to get this, shame on you. If you don't care about yourselves please have some consideration for your family that could have to witness this, IT IS NOT PLEASANT! Ask Paul!
I have never felt so ill in all my life, I have got up to 4 go's at this, after the second one I will have a scan to see what's happening The results of that and how me and my body are handling things will decide on whether I get the other 2 go's. I have a 4-6 chance out of 10 of this working an d even then that is NOT a cure it's just to buy me some more time.
Those of you who know me know how positive I have been about this so far but I can honestly say at the moment I can fully understand why people would opt to stop treatment. The only thing that is keeping me going and will make me want to go the next round is the chance it will work and the fact this won't last for more than a week.
I hope I can write something more uplifting tomorrow.
Sunday, 2 June 2013
IV Chemo - DAY 1
Yesterday I started the next step on this journey.... My IV chemo started. I want to write it all down so I can hopefully sit back and say it was all worth it.
It stated on time, There were 11 infusions altogether if you count the flushes, although most cam out of same bag. Only 2 chemo agents which went through with no problems, the Mannitol was painful though!
To start with they flush you, rehydrate you and give anti sickness meds, the the first chemo - pemetrexed only takes 15 minutes to go through, I managed to do some crochet before this to make sure I didn't dislodge the needle with the wrist action lol, it was fine.
From about midday I started to get tired, I thought it was lack of sleep from the last 2 nights initially but after reading the side effects leaflet from the -emend (anti sickness) I think it could be that as it came across like a wave. I didn't really recover it just got worse, not a bad thing but with all that fluid going in and the Mannitol (diuretic) I kept needing the loo!
It was 16.30 by the time it was all finished, apart from feeling extremely tired not else seemed that bad. I had Steak and salad for tea and even managed a bar of chocolate. Indigestion is also another side effect so rather than my beloved orange juice to drink - as well as the water- we got some strawberry nesquick to make milk shakes. The tiredness did completely take over though and I went to bed about 8.30. I did exactly as I had been told and took a full litre of water to bed, It's difficult when you are so tired to keep drinking then have to keep dragging yourself out of bed to go to the loo!
This morning is another story! I feel like CRAP! Still extremely exhausted, not like me at all. I have the headache from hell, not sure what to take for it?? Not sure about paracetamol as it may mask infection, non steroidal's can cause indigestion and I'm already prone to that, feel nauseated - although not to bad, next anti sickness, emend, isn't due until 9.45. I do have some 'extra' (Domperidone) just in case but will only take if absolutely necessary. Have had a small breakfast, cereals as had to have food with dexamethasone. Didn't taste it, in fact all taste had gone, had coffee, didn't taste it but need it's laxative effect, don't want to get constipated and that's another side effect of something. I can't imagine feeling like this for longer than a few days. I feel ill :(
It stated on time, There were 11 infusions altogether if you count the flushes, although most cam out of same bag. Only 2 chemo agents which went through with no problems, the Mannitol was painful though!
To start with they flush you, rehydrate you and give anti sickness meds, the the first chemo - pemetrexed only takes 15 minutes to go through, I managed to do some crochet before this to make sure I didn't dislodge the needle with the wrist action lol, it was fine.
From about midday I started to get tired, I thought it was lack of sleep from the last 2 nights initially but after reading the side effects leaflet from the -emend (anti sickness) I think it could be that as it came across like a wave. I didn't really recover it just got worse, not a bad thing but with all that fluid going in and the Mannitol (diuretic) I kept needing the loo!
It was 16.30 by the time it was all finished, apart from feeling extremely tired not else seemed that bad. I had Steak and salad for tea and even managed a bar of chocolate. Indigestion is also another side effect so rather than my beloved orange juice to drink - as well as the water- we got some strawberry nesquick to make milk shakes. The tiredness did completely take over though and I went to bed about 8.30. I did exactly as I had been told and took a full litre of water to bed, It's difficult when you are so tired to keep drinking then have to keep dragging yourself out of bed to go to the loo!
This morning is another story! I feel like CRAP! Still extremely exhausted, not like me at all. I have the headache from hell, not sure what to take for it?? Not sure about paracetamol as it may mask infection, non steroidal's can cause indigestion and I'm already prone to that, feel nauseated - although not to bad, next anti sickness, emend, isn't due until 9.45. I do have some 'extra' (Domperidone) just in case but will only take if absolutely necessary. Have had a small breakfast, cereals as had to have food with dexamethasone. Didn't taste it, in fact all taste had gone, had coffee, didn't taste it but need it's laxative effect, don't want to get constipated and that's another side effect of something. I can't imagine feeling like this for longer than a few days. I feel ill :(
Tomorrow I start IV chemo
I have had another roller coaster week this week with mixed emotions.
Stopped taking Iressa a week ago so felt a bit strange having 'no' treatment for a week. Started folic acid tablets following the IM injection and today I started the dexamethasone. 8 mgs so far have been taken, I hope I sleep tonight!
On Thursday we went up to Liverpool as (If you are on Facebook are bound to already know ;) ) I had been nominated for the Roy castle Ambassadors award. And guess what......I WON!
I never win raffles, was useless at sports day so never won anything there or even things on E bay but this is the best 'win' I could ever hope to win. My lovely family were there too and I hope I made them all very proud. Apparently I gave a good speech too although I now cannot remember a word I said!
We stayed up in Liverpool for a few days and had a lovely time. Just today to recover and I had all good intentions of giving the house a 'spring clean' It never happened I was just too tired. I did make a very large Sunday Lunch and ate a family size bar of Cadbury's whole nut as I'm told I will lose all sense of taste afer the IV starts so I wanted to really enjoy something :)
We have some sweets to take with us tomorrow and I will be making sandwiches as the nurse said the ones that have there are not that good..... yes....I am starting IV chemo tomorrow.
I know I need it as I'm coughing a lot more, having a few pain twinges and generally don't feel as good as I did. Going to write this more again now as I want to keep a good record of the things to come and try and write a good account of what it is like and whether it is worth it. At the moment I feel everything is 'worth it' I don't want to die and still have so much to live for and so much I still want to do. Another holiday is one thing and to see the stats for surviving lung cancer increasing is another! I also want to see CRUK jumping on the band wagon and actively supporting Lung Cancer is another, that they will do when the stats 'on paper' show promise I'm sure. It won't be for another 5 years or so as we ate about 5 years behind but when it does remember you heard it here first!
I'm signing off now for tonight but I will hopefully be back tomorrow to tell you how my first day has gone.
Stopped taking Iressa a week ago so felt a bit strange having 'no' treatment for a week. Started folic acid tablets following the IM injection and today I started the dexamethasone. 8 mgs so far have been taken, I hope I sleep tonight!
On Thursday we went up to Liverpool as (If you are on Facebook are bound to already know ;) ) I had been nominated for the Roy castle Ambassadors award. And guess what......I WON!
I never win raffles, was useless at sports day so never won anything there or even things on E bay but this is the best 'win' I could ever hope to win. My lovely family were there too and I hope I made them all very proud. Apparently I gave a good speech too although I now cannot remember a word I said!
We stayed up in Liverpool for a few days and had a lovely time. Just today to recover and I had all good intentions of giving the house a 'spring clean' It never happened I was just too tired. I did make a very large Sunday Lunch and ate a family size bar of Cadbury's whole nut as I'm told I will lose all sense of taste afer the IV starts so I wanted to really enjoy something :)
We have some sweets to take with us tomorrow and I will be making sandwiches as the nurse said the ones that have there are not that good..... yes....I am starting IV chemo tomorrow.
I know I need it as I'm coughing a lot more, having a few pain twinges and generally don't feel as good as I did. Going to write this more again now as I want to keep a good record of the things to come and try and write a good account of what it is like and whether it is worth it. At the moment I feel everything is 'worth it' I don't want to die and still have so much to live for and so much I still want to do. Another holiday is one thing and to see the stats for surviving lung cancer increasing is another! I also want to see CRUK jumping on the band wagon and actively supporting Lung Cancer is another, that they will do when the stats 'on paper' show promise I'm sure. It won't be for another 5 years or so as we ate about 5 years behind but when it does remember you heard it here first!
I'm signing off now for tonight but I will hopefully be back tomorrow to tell you how my first day has gone.
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