Update on my husband

[Sueba]

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]

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]

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]

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]

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]

Sue,

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

Jeni.

[Sueba]

Steve

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

Thanks

Sue

[PCUK Nurse Jeni]

Have sent you his!!

He said this was fine!

J.

[DRAD3]

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

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[suef]

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]

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]

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

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[Sueba]

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]

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]

Hi Karen

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

[Catherine]

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]

Hi Sue,

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

Thanks

Linda

[Sueba]

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]

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]

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]

How's Mick doing Sue?

Regards

Steve

[Sueba]

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]

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

[J_T]

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]

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

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