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Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: Update on my husband

Postby Catherine » Sun Apr 14, 2013 11:47 am

Hello Sue, this is really good news for you and your family. It's also giving hope to lots of others. I wish you all the very best. Catherine x

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Update on my husband

Postby LindaH » Mon Apr 15, 2013 6:58 pm

Hi Sue,

Please could I just ask you if you tried anywhere in the UK for the operation?

Thanks
Linda

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Update on my husband

Postby Sueba » Wed Apr 17, 2013 9:12 am

Hi Linda
Yes we saw 2 different surgeons here in the uk but both said he was inoperable due to vein and artery involvement,the op he had in Germany involved resecting the hepatic portal vein which the surgeons deemed inoperable.They may be some patients on here who know of surgeons in this country who have the skills to perform this surgery but we couldn't find one,it was only when I started researching surgeons that the same name kept cropping up,Prof Buchler of Heidelberg,Germany.
Hope this helps
Kind regards
Sue
X

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Update on my husband

Postby LindaH » Thu Apr 18, 2013 10:21 am

Sueba wrote :
> Hi Linda
> Yes we saw 2 different surgeons here in the uk but both said he was
> inoperable due to vein and artery involvement,the op he had in Germany
> involved resecting the hepatic portal vein which the surgeons deemed
> inoperable.They may be some patients on here who know of surgeons in this
> country who have the skills to perform this surgery but we couldn't find
> one,it was only when I started researching surgeons that the same name kept
> cropping up,Prof Buchler of Heidelberg,Germany.
> Hope this helps
> Kind regards
> Sue
> X


Thanks Sue. I will be going to see another specialist next Thursday at XX in Manchester, whether they will be able to help me any more than the treatment I am already receiving from my team in my home town...well it's anyones guess.

I will ask about an operation in the UK, because no way would we be able to afford go to Germany, so fingers crossed and whilst I know XX will not be able to wave a magic wand then all will be well, they may just have a miracle in their top drawer just waiting for me ....one has to hope.

Thanks again
Linda x

PCUK Nurse Dianne
Posts: 287
Joined: Tue Aug 14, 2012 3:29 pm

Re: Update on my husband

Postby PCUK Nurse Dianne » Thu Apr 18, 2013 11:53 am

Thanks Sue for sharing Mick's news, that is great and I am sure gives a lot of hope and inspiration for others.

I just wanted to put out into the general arena that there are some surgeons here in the UK who will operate on portal vein involvement, they are not in every centre, but located at various places within the UK.

Of course we could not advocate on their behalf of those who would be suitable as it depends on the extent of tumour and involvement of the portal vein, along with their expertise. If anyone does wish to pursue an option locally we could give you names of the surgeons we know who may consider this.

Dianne
Support Team

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

Re: Update on my husband

Postby Slewis7313 » Thu Jul 11, 2013 1:11 pm

How's Mick doing Sue?

Regards

Steve

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Update on my husband

Postby Sueba » Fri Jul 12, 2013 8:05 am

Hi Steve
Since my last post at 9 weeks post op Mick underwent 2 more cycles of Folfirinox,and it was an awful experience for him!prior to surgery he tolerated the chemo well but this time with him being in a different position it really wiped the floor with him.
But that was almost 7 weeks ago now and I have to say he is going from strength to strength,he is putting weight on(has a tan!) and is back to most activities,cutting grass,shopping,even doing a couple of classes down at the gym (under the watchful eye of the trainer!)
We have recently had a few milestones that back in October we never thought we'd see,godparents at our nephews christening,our 20 th wedding anniversary and next Friday it is his 43rd birthday,something else to celebrate!
He still gets tired,especially in this hot weather!and digestion,blood sugars are always going to be an issue,but in his words "I can live with that!"
So,back for a scan at the end of August and results in September,if all is well scans every 3 months unless he starts to feel unwell etc
So for now its concentrating on our 3 sons,our twins will be applying for university in September so we've been doing the rounds of university trips.Weve also a holiday in Greece to look forward to in August."living for the moment is my new mantra!"
I've been following everyone's stories on here and send all my love to the forum family!
Pleased to hear everything is going well for you Steve.
Sue
Xx

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Update on my husband

Postby MSH » Fri Jul 12, 2013 9:21 am

That's really good news sounds like he's going from strength to strength.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Update on my husband

Postby J_T » Fri Jul 12, 2013 10:51 am

Hi Sue
So pleased to hear how well Mick is doing and I'll bet you're really looking forward to your Grecian holiday, the whole family deserve some R & R. Long may his recovery continue.

Julia x

PS congrats on the wedding anniversary!

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

Re: Update on my husband

Postby Slewis7313 » Fri Jul 12, 2013 6:25 pm

Thanks for the detailed update Sue. Great to see that the overall trend is upwards and that the deision to go for Heidelberg was the right one for you.

Enjoy your Holidays.

Steve

X