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So far so good!


Slewis7313
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Hi Steve,

I think mars bars sound a good idea ! My husband is starting the fox on Tuesday, gets his line fitted tomorrow. I often tell him about you and I even mentioned you to one of his nurses yesterday when she was discussing side effects, I said, ah steve gets that !

love Jayne

x

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Hi Steve


I haven't posted on here for a while as I have been in the south of France for a couple of weeks so have lost touch a bit with what has been going on.


Glad to see you are keeping on keeping on. Jonathan was told eat and drink whatever you fancy and he did. I think if you fancy a Mars, why not?


Cathy xxx

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I had a really positive meeting with my Oncologist today. After my doubts from the last meeting, I explained that the thought of being permanently on Folfirinox had actually depressed me even though my tumour marker had tumbled drastically. I explained that at the time it felt a bit like 'the beginning of the end' (to me anyway). She explained it was not the case, but simply the recognised best way to stay on top of things by hitting it hard on a 2 weekly cycle. The length of time I can stay on Folfirinox is ultimately unknown, but could be quite some time to come yet. I have since gotten my head around this and am comfortable with what we are doing. If I struggle with the treatment side effects at any point, the recommendation would be to reduce the dose rather than increase the cycle length. Again, I am more than OK with this and accept I am doing really well by Pancreatic Cancer standards (20 months since diagnosis). My marker will be checked again next week and I can call the Oncologist the day after for the result if I wish to (in case the chemo unit are reluctant to share it with me). I am now going to have another CT scan and will arrange for a PET scan privately (the NHS still cannot justify a PET for Pancreatic Cancer!).


All in all a good day and result!


Take care all


Steve

X


PS....2 weeks until the Jersey break!

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Glad uve had such a positive meeting with your oncologist Steve, ive been told three times this week they are getting really good results with the fox !!

Love Jayne

x

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Just caught up with all your news! I hope things become more straight forward for you at some point, you like to make it complicated eh? ;)

Hope you get the PET scan privately, I don't get the no pet scan for PC, surely it should be on a patient by patient basis, but they have to play the money game I suppose.

I'll keep an eye on you though Steve, I expect great things! :)

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More good news folks! Chemo went ahead today as the bloods were reasonable. The big news is that my CA19-9 has dropped from 766 last month to 299 today. Over the moon about the continued rapid downwards march with the marker. The Neuropathy is a little worse this time with a tingly toungue and lips, but this usually improves within 48 hours so I am not overly concerned on this front.


All bodes well for the upcoming Holiday!


Steve

X

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Hi Steve, good to learn that things are going well with you. I am about to have cyberknife treatment to my back followed by some Folfirinox. I'm a bit wary as I still have a bit of lingering neuropathy, but when my oncologist said she would reduce the dose I said no. (Edit: sounds arrogant but I have a really good relationship with my oncologist.)


How many courses of Folfirinox have you had now, and what were the cell boosting injections you mentioned on another thread?


Mark

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Hi Mark. I started cycle 7 of Folfirinox today and the jabs are Filgrastim (Zarzio),300 micrograms.


Thanks for the comments and I hope the Cyberknife goes well.


Steve

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  • 2 weeks later...

Steve, just popping back and had to check in with one of my fave PC fighting fellas. Good to hear you're coping with the Folfirinox & fantastic news ref the markers. Understood the reaction to the "no fixed end" discussion about chemo too.


Wishing you all the best and keeping up my end mainly on Twitter these days with shouting about the 8th Sept parliamentary debate (in between deathly boring infosec stuff :-)


Take great care m'dear and as always awed by your focus.


Sarah

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Thanks Sarah.......really good to see you here again after us all sharing so much along the way. Nothing new to report on my front other than Margaret and I are flying to Jersey on Wednesday for 5 nights (between flush and chemo). I have an extra week between treatments to allow this trip and am as a result feeling relatively good, so looking forward to getting away.


Take care


Steve

X

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hi steve. some time since i have posted. and also spoke to you. am so glad to hear things are going well for you, and still receiving treatment, so pleased for you and great to hear that you both are managing to get some breaks in.

bri is still doing well. 4 1/2 years now since diagnosis. still gets tired and stamina poor but all in all things are good.

we wish the same for you, and all the other "family" on here, stay positive and focused , and beat this B@@@@@d.!!

lots of love to you all

laura xxx

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Steve so please you gave good news with the CA markers and hope you gave a great holiday. Although James doesn't post himself, he always wants to know what you been up to and you give us hope. In terms of the flying, do you have to take any extra precautions to avoid picking up an infection? James' oncologist has advised that he doesn't fly because apparently since planes became smoke free, the air is simply circulated and potentially full of germs. We are thinking of trying for a holiday in september and wearing a mask, even though James might look odd that's the least of our worried.


Fiona X

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Hi Steve

I have just read that you are on ITV Wales tonight and wanted to say Thank You - a million times. Not only are you fighting your own battles but you continue to fight a battle which affects not only you but others too - both now and in the future. That takes a very special person. So good luck tonight, but more importantly good luck to you and your family. Enjoy the holiday. Thank You again.


PS I hope to watch - but as a Welsh girl who now lives in England I'm not sure I can tune in??

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Hi Steve,


I haven't had time to read all your thread but I must say you are amazing! I am quite new here and will try to get known everyone. You are all fantastic and supportive!


Enjoy your holiday, you both deserve it!

Susanna x

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Back home again after a fantastic break. The weather played ball most of the time and the Hotel was great. Perhaps most significantly, the good old diarrhea played up badly early in the holiday and brought with it really painful piles (something I have only experienced since starting Folfirinox). We never got around to trying Codine for my diarrhea, but Margaret happened to have prescription strength Cocodamol with her which I took to ease the pain. The pain went and much to my surprise, the diarrhea improved noticably. I continued to take the Cocodamol and my loo visits have dropped from around 15 a day to 4 a day. Now we are home, I was able to weigh myself and have put on 5Kg in a week! (I have struggled maintaining weight since on Folfirinox). I shall be seeing my GP today and asking for Codine to replace Imodium amd hope that the associated discomfort and problems with weight will improve.


I'll keep you posted on developments!


PS... Bloods today and cycle 9 starts tomorrow.



Steve

X

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Hi glad you have had a fantastic break, we too have been away to York and had a brill time. As for the bowel movements we ended up the other way (constipated)while away, had to end up getting him senacote still taking them now but things are improving must be a change in the water. Hope everything goes well tomorrow x

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Steve, glad you had a fantastic break. James now takes codeine regularly, 15mg X 2, 3 times a day and then Imodium if he has an actual episode, which touch wood is much reduced. A couple of times he has reduced the codeine and he is straight back in the loo! The only problem is that it makes he feel a bit dopey and accelerates the affects of alcohol, but he still manages his usual quick drink in the pub before dinner and another glass of wine with his meal, so generally not too bad.

Hope all goes well tomorrow

Fiona X

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Hi Steve, great to hear you have had a fantastic break despite problems from the rear!!!


Glad you seem to have sorted it and put on 5kg, that's fantastic, keep up the good work. Are you, or have you been on TV yet?


Julia x

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