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Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Pancreas pain

Postby Slewis7313 » Wed Feb 18, 2015 11:53 am

Sorry To hear he is feeling so down Didge. It Probably doesn't help when they have the tools to do the job but can't use them because of policy.....it's absolutely ridiculous, especially when they said at the start that these options were available.

Hope he picks up and that the GemCap helps!

Steve
X

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Pancreas pain

Postby sandraW » Wed Feb 18, 2015 12:26 pm

Hi Didge,
sorry he's feeling down, I think it suddenly hits them, Trevor still deals with it by half believing that he is going to be cured. I think when your partner went on Folfirinox, Abraxane was at that time still an option, but now it has been reclassified, you can, only have it as a first line treatment. I know when we were talking about other options the Prof said the same, that Abraxane was now no longer an option for us. As Steve said its a disgrace as its all about money, when Trevor said that to the Professor though he was most upset, I think it also bothers them that they can't give the treatments needed.
Hope that the Gem/cap helps, I know he wasn't too well on it last time, but as we have all found when they go back on treatments the side effect can be so different, so fingers crossed he will be ok.
Thinking of you both, sandrax xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Pancreas pain

Postby nikkis » Wed Feb 18, 2015 4:07 pm

Hi Didge,
I know what you mean about him realising what you have been living with for the past 18 months, and Paul, like Sandra's Trevor was also convinced he would be cured, but I guess if that is what has kept them going it can only be a good thing. Even now Paul is asking the hospice Doctors about building him up so he can restart treatment, even though he knows that isn't really an option. It's all so heartbreaking isn't it?

On the Abraxane question, Paul had it as second line treatment, as his insurance paid. Whether it made any difference we will never know, quite possibly not, but in this situation you just want to throw everything they have at it when someone so desperately wants to live. I wish I had some words of comfort, but you are both in my thoughts and I really hope the Gem/ Cap gives you both some respite from this relentless disease,

Nikk

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Pancreas pain

Postby Didge » Wed Feb 18, 2015 4:21 pm

Well, after only one treatment (last week) guess what? His platelets are too low again. So no chemo today. Gemcitabine never agreed with him from the start - ironically he did much better on the folfirinox. They are hoping to ablate 2 liver tumours next week but one will almost certainly be too big now and looks like the chemo option has dried up. We are still tinkering with alternative stuff but that's mainly been my input - he's addicted to McDonalds and sweets so feel like I'm banging my head against a brick wall. Anyway, thanks for all your posts - it's so comforting to know you're all out there. And I do think the 'this isn't going to get me' is a good state of mind to be in - and who knows, for a lucky few maybe a miracle will occur! And good luck with your scan, Sue. Hopefully yours will stay away and be a truly good story!
xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Pancreas pain

Postby nikkis » Wed Feb 18, 2015 4:47 pm

Paul's platelets were always abnormally high due to the gemcitabine, it is just so strange how it can affect everyone so differently. Mac Donald's and sweets sound a good option for keeping weight on, perhaps with healthy options as well to keep you both happy?! Really hope the ablation is an option and success, keep hopeful,

Nikki

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Pancreas pain

Postby Didge » Wed Feb 18, 2015 5:33 pm

The weird thing is, he's actually putting on weight even though he's not eating much. And it can't all be down to sneaking junk food and sugar, as for a start he sometimes sleeps for enormous amounts of time and only manages one sandwich or 2 small snacks all day!

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Pancreas pain

Postby nikkis » Wed Feb 18, 2015 6:23 pm

That can only be a good sign Didge, as the Cancer eats up the calories when it's very active.

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Pancreas pain

Postby jay » Thu Feb 19, 2015 8:18 am

ah didge sorry he couldn't have chemo yesterday.You are right about "this isn't going to get me state of mind", I was totally convinced jem was going to be in the 3% and you never know miracles can happen, I was told jem would die on the operating table by 4 doctors but he survived and lived for 3 weeks afterwards, nurses were calling him the "miracle man" and his registrar said its was his sheer determination to live,
hopefully he will get ablation next week
stay strong
sending you both my love
Jayne
xxx

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Pancreas pain

Postby Didge » Sat Feb 28, 2015 8:46 am

following on from Steve's good news we have some 'almost' good news too. Rob had one of his liver tumours ablated this week and the plan is radiotherapy on the other or more likely conventional surgery very shortly. if this goes ahead it would mean that he was in remission although we know it would be temporary. but still! we will take what we can get x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Pancreas pain

Postby Slewis7313 » Sat Feb 28, 2015 8:57 am

Good news indeed Didge. Good luck with the ongoing treatment plan.

Steve
X

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Pancreas pain

Postby RLF » Sat Feb 28, 2015 9:13 am

Great news didge! X

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Pancreas pain

Postby nikkis » Sat Feb 28, 2015 9:21 am

Wow Didge,
That is just wonderful news. We all know the ups and downs with this disease are so exhausting, so make sure you and Rob have a lovely, relaxing weekend,

Lots of love,
Nikki

Fifi

Re: Pancreas pain

Postby Fifi » Sat Feb 28, 2015 9:27 am

That is really good news Didge. Please let us know how it goes.

Leila xx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Pancreas pain

Postby sandraW » Sat Feb 28, 2015 12:21 pm

That's really great news Didge,hope he continues to do well. sandrax

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: Pancreas pain

Postby SusannaUK » Sat Feb 28, 2015 12:30 pm

Dear Digde,

This is great news! I hope the surgery will go well!
Always thinking of you!
Love,
Susanna xxx