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So far so good!


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Glad you had a good holiday Steve, can you post a link to your TV appearance please I am sure we would all like to see what was said. 5 Kilos weight gain, that's good news too, fingers crossed for you, take care sandrax

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Hi Steve,

I'm glad you had a nice holiday and you've put on weight! That's brilliant!

Unfortunately my husband is still loosing some continuously. He also has his 9. cycle of Folfirinox today! I think you started Folfirinox at the same time. He had his first one on the 13th of May 2014.


All the best for today! (I haven't checked the link yet, but I will do it soon.)

Susanna x

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PCUK Nurse Jeni

Hi Steve,


At last, I got a glimpse of you!


Great interview - well done you!


Great news about the weight gain, and more importantly, the cure for the diarrhoea! I guess not having the diarrhoea so much has allowed you to gain the weight a bit, and hold onto it. That's great.


Keep up the good work Steve.


Kind regards,


Jeni.

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  • 2 weeks later...

So...... Back to the treatment. I met with my Oncologist this morning who is over the moon about the continued decline in my CA19-9 (299 last week). We covered quite a few issues, so here goes:


The diaohrea is much improved and the piles have gone since switching from Imodium to Codein.


She does not feel I need a PET scan at the moment as the Tumour Marker is showing we are doing the right thing, but we agreed that as my insurance will pay we will go ahead with the scan anyway. The last scan was a few days before I started Folfirinox and I now have 8 cycles under my belt, so it must be a good measure of what is being achieved, epecially with regards to my Liver.


I have been experiencing shakes, vomitting and latterly deperession on days 6/7. Rather than play with chemo, as a 'starter for 15', we are going to modify my steroids which I currently take on days 2 to 4 of the cycle. We will now reduce the dose and spread over 7 days in an attempt to minimise withdrawl symtoms (if this is indeed my problem). The depression was something new to me and was quite severe (as Margaret will confirm!!).


In addition, during the last chemo session, the Oxaliplatin was inadvertently delivered over 3 hours instead of 2 and my Neuropathy was much improved. As a result, it will be administered over 3 hours in future.


The day 6/7 issues have affected my ability to work, so I will be having a short sabatical until we get it back under control. My employer continues to be fully supportive, so I don't expect an y issues with this plan.


Whilst I have the above issues, I generally seem to be doing really well still, for which I am of course grateful. I am very mindful that others here have far more difficult issues to deal with and I wish you all well with the ongoing struggle.


Steve

X

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Thanks for being so honest Steve, it will really help others reading the forum, I hope you continue to do well with your struggle too, and that the changes with the steroids do the trick, take care sandrax

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Fingers crossed for you on Monday Steve, still reading your thread and checking up on you. Carls next scan is Tuesday, first on since the one post radio-frequency ablation, so I'm very nervous and I know he is too. I'll be thinking of you on Monday! Best of luck, Rob x

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Thanks Rob, I likewise keep an eye on Carl's blog. Please give him my regards and keep up the entertainment. Stand up comedy is meant to be one of the most difficult stage experiences around!!



Steve

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Three words,


WHAT

A

GUY!


You never fail to inspire Steve and I know your fantastic family are such a support. Good luck with your ongoing treatment.


Julia x


Rob, hope all goes well for Carl x

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Another bit of good reaction to recent publicity. I am in the Chemo Unit at the moment and was sitting next to another patient who I have seen before. We usually chat with the usual pleasantries, but this time he recognised me from the media and said he too has Pancreatic Cancer........ So I am not alone after all! We discissed treatment, progress, Oncologist and other interesting stuff. Unfortunately, his bloods are down and they have aborted his treatment, but it was great to have the Pancreatic Cancer specific hat.


Steve

X

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That's great Steve. A pc patient joined us at Ray's last two Folfirinox chemo sessions, she had just moved up from Herefordshire with her husband and to be near her children - stressful! I'd love to know how she's getting on but I only knew her by her first name.


We certainly didn't expect to meet another pc patient and it was kind of nice to be with someone who we could share information with.


Hope you're still doing okay.


Julia x

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  • 2 weeks later...

Hi Steve,


Just a quick one. Saw my dad today. He always asks about you and I read your reply on my post to him. He said he is pleased 'your number' has come down and passes on his best to you as well. Think he's took a shine to you. He doesn't remember too much, but always remembers to ask How Steve is doing.


Leila xx


P.s. I'm pleased your tumour marker is down also.

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