A forum for advanced pancreatic cancer issues

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

Update on my husband

Postby Sueba » Fri Apr 05, 2013 2:27 pm

Hi all
Although I have been reading posts on this forum I have not recently updated people on my husbands situation,we have basically lived in a bit of a whirlwind!!
As a quick background, my husband age 42 yrs old was diagnosed with advanced inoperable pancreatic cancer on oct 2012, leaving our whole family devastated (we have 3 boys). He started on chemo in November, Folfrinox, he had 6 cycles then a scan in January. Not quite the results we'd wanted but the tumour although hadn't shrunk, hadn't grown either and was still contained. The plan was to have a short break then start chemo radiotherapy.
I had already scoured the Internet for places that may operate on inoperable pancreatic cancer where the tumour involved veins and arteries and came upon a success story where a woman in a similar situation had managed to find a surgeon in Heidelberg Germany, so we looked up the surgeon (Prof Buchler) and contacted him that evening!
The following week we were siting in his office with him telling us that he thought my husband was suitable for surgery and he would be ale to resect the hepatic portal vein which was encased in the tumour, we were the lucky ones not everyone who went to see him was suitable due to age, fitness etc
So 2 weeks later after granny and granddad moving into our house we left for Heidelberg!
My husband was operated on on Monday Feb 18th and was in theatre 9 hours! 31 lymph nodes and some soft tissue were removed during the operation as well as the tumour, and they all came back clear!(the chemo had done its job)
He was in intensive care 4 days and a further 2 weeks on the ward. It was a rocky road and we had some very down days, being away from home etc, but the care and positive attitudes of the consultants and surgeons was fantastic!
We have now been home nearly 3 weeks and he is slowly improving, the main niggle at the moment is eating as he has had some of his stomach removed he feels full quickly and is needing to maintain his weight or try and put some weight back on, ready to have chemo again in a couple of weeks.

The reason I wanted to write an update is to try and give people some hope that if you don't give up there might be other areas you can explore, it hasn't been easy and we have needed the love and support of our family and friends, but he is still here 6 months after diagnosis, and even though we don't know what the future holds that damn tumour is gone!!!!
Sue B
Xx

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

Re: Update on my husband

Postby Slewis7313 » Fri Apr 05, 2013 3:21 pm

Thanks so much for the information Sue. I am in a similar position and my Daughter contacted Heidelberg yesterday to see if they would consider my case. Whist older than your husband (58) I am fit and have no weight issues. It is really reassuring to know that other options are available. My treatment s going really well with my tumour stable and chemo radiotherapy lined up for early June, so I am not sure I would jump ship at this time, but it sounds as if a conversation with Heidelberg would do no harm.

I wish your husband a speedy recovery and thanks again for highlighting this.

Might I be so bold as to ask what the procedure cost?


Take care

Steve

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: Update on my husband

Postby Sones » Fri Apr 05, 2013 3:35 pm

Sue I am so pleased, what fantastic news!

It's early days so eating will be trial and error, i was told to "graze" which seemed to work for me. I can eat almost anything I want now but still in small amounts.

Keep us updated.

Sue.x

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

Re: Update on my husband

Postby Sueba » Fri Apr 05, 2013 5:33 pm

Steve
If you would like to email me I can let you know roughly the cost,I don't like to discuss things like that on here,but luckily my husband had taken out critical illness cover 2 years previously which paid out on the diagnosis of cancer,we had never really thought of that money but it will come in to cover the (high)costs.Not sure of the situation if you have private health insurance(we don't) though.
It may be worth contacting Heidelberg before radio chemo Steve as I'm not sure how radiotherapy effects the ease of operation but you could possibly ask that over the phone,positive news about your chemotherapy Steve in that it has stabilised the tumour.
Sue-thanks for the reply,we are sprinkling creon onto jam to try and help with absorption in the hope his weight may stabilise we think he may be having trouble absorbing the outer capsule due to lower stomach acids (Thank you to Dianne and Jeni for their advice)so we shall see how it goes!
Good wishes to all
Sue
Xx

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

Re: Update on my husband

Postby Slewis7313 » Fri Apr 05, 2013 5:40 pm

Apologies Sue (and others). After asking the question I did wonder about how appropriate it was. I also have a similar policy which I had almost forgotten about. I'll redirect the question.

Thanks

Steve

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Update on my husband

Postby PCUK Nurse Jeni » Fri Apr 05, 2013 5:41 pm

Sue,

If you are happy for me to give Steve your email address, then I can.

Jeni.

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

Re: Update on my husband

Postby Sueba » Fri Apr 05, 2013 5:44 pm

Steve
Ha ha no problems,yes Jenni please could you let Steve have my email address?
Thanks
Sue

PCUK Nurse Jeni
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Update on my husband

Postby PCUK Nurse Jeni » Fri Apr 05, 2013 6:05 pm

Have sent you his!!

He said this was fine!

J.

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Update on my husband

Postby DRAD3 » Fri Apr 05, 2013 8:02 pm

Sue - what fantastic news! So glad your husband is doing well, albeit with some problems that you obviously have well in hand. Things seem to have progressed so much just in the couple of years since I first joined the forum and it really does give us all so much hope for the future.
Good luck with your investigations, Steve.
Thanks for sharing Sue.
Deb
x

suef
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: Update on my husband

Postby suef » Fri Apr 05, 2013 8:08 pm

Just to let you know that I had 35% of my stomach removed during my Whipple and at first I could only eat small quantities, but 3 years later I think it has expanded! The other day I had a huge plate of fish & chips - with no harmful effects. It just takes time for your body to heal. Just graze at first, and stop before you feel quite full, that way it is easier to digest!

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

Re: Update on my husband

Postby Sueba » Fri Apr 05, 2013 8:49 pm

SueF
Thanks for that sue,he loves his food!
Even in the last few weeks he's been managing a bit more but he did have a few episodes last week where he was sick following food when he felt he needed a burp!!
But the whole family is working on fattening him up now!
Sue
Xx

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Update on my husband

Postby KATB » Sun Apr 07, 2013 4:39 pm

Sueba, that's fantastic news! I had seen an article on the BBC website about a woman undergoing the same surgery and I just wondered how feasible it really was for other people. So thanks so much for your hopeful post. My dad hasn't even started on chemo yet but it's another thing to keep at the back of our minds as I will try anything and everything to keep him with us for as long as possible. He is only 61 and otherwise well but we will see how chemo goes first.

Do keep us updated with his progress.

Kate
x

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

Re: Update on my husband

Postby Sueba » Sun Apr 07, 2013 6:43 pm

Thanks Kate
I'm so sorry to hear about your dad,it really is a horrible disease isn't it!
Yes we say a story about a lady going to Heidelberg on a website like this and contacted the hospital after reading her story.We have been in touch with her and correspond by email,she had her op last April and is doing well,so good to see some positive news!
Best of luck to your dad with his chemo without it my husbands tumour wouldn't have stabilised and then possibly not fit for surgery.
Best wishes
Sue
Xx

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Update on my husband

Postby karen17 » Tue Apr 09, 2013 8:45 pm

Hi Sue,
You have both been in my thoughts since you went to Germany and I am so so pleased to hear your good news. Wishing Mick a speedy recovery xx

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

Re: Update on my husband

Postby Sueba » Tue Apr 09, 2013 9:29 pm

Hi Karen
Thanks for your good wishes,hope all is well with you xxx