Unsuccessful whipple attempt

[Blue-Eyes]

Hi there everyone, I have been reading all your posts and I'm so glad to have found you all, July 15th our life was turned upside down when we found out my lovely dad,my hero had pancreas cancer, after weeks of tests, waiting, stents fitted, block stents,scans more waiting ... They decided he was a candidate for the whipple, we headed of to xx in xx as we live in Cornwall, we were told before the op that if the cancer had spread once they opened him up that they could not do it, they went ahead to operate but unfortunatley couldn't proceed not because of it spreading but because the tumour which is in the head of the pancreas had attached to the main vein,as you can imagine we were devastated, they did a bypass to relieve jaundice etc.

My dad is now going to be starting chemo, can anyone shed any light on this, does it help? They said it maybe possible if the tumour shrinks they could retry the whipple, is there anyone that this has happened to, my dad is feeling fine in himself, regaining the weight he lost, to look at him it's hard to believe he has this horrid disease.

Thanks for reading this

Kind regards H xx

[DRAD3]

Hi H

Welcome to the forum, I do hope it helps to get some information but also support at what will be a very difficult time for you, your Dad and your family. We will be here any time you need us, be sure of that.

It is good news that your Dad feels fine and he is regaining the weight he lost - it also seems positive in that they are saying that they will reconsider the whipple - this would imply they are confident that the treatment will have a good effect. My husband's tumour shrank after his first lot of chemo but the whipple was never an option so different in that respect. You do not say what chemo treatment they are going for but I assume that as he is feeling OK that he will tolerate this well - they will keep a close eye on him and will adjust things if need be. Let us know what chemo he will be on when you know and hopefully one of us can shed a bit more light. I know it is difficult, but try and stay positive and I do hope that your Dad continues to eat well and stay feeling fine.

Keep us posted and you take care of yourself too, it can be tiring, caring and worrying about our loved ones and you will need your strength too.

Much love

Deb

x

[Blue-Eyes]

Thankyou for your reply,it's lovely to know your all here, he will be having Gem cap/ gemcitabine and xeloda, do you have any experience of these, all we can do is hope, trying to stay positive as hard as it is, as there's no room for negativity with this terrible diesese

Kind regards H xx

[laura]

hi blue eyes, well yes, i can relate to your story completely, my hubby was in the same situation in april 2010, i feel i cant relay our story all over again, people will get fed up re-reading it, we too live in cornwall, also went to xx etc etc etc, when you sign in, click on my name and you will be able to review all my posts, if you want further info feel free to ask.

we actually go away on monday next and wont be back at home untill 24th nov, if your desperate, and want to talk b4 we go away i am happy for my telephone no or email to be passed to you?

chin up and kind regards to your dad

love laura xx

[Blue-Eyes]

Hi Laura, thankyou for replying sorry that this situation happened to yourselves too, I will have a read through your threads as I'm sure they will be of use to us, have a lovely break and when you come back I would love to have a chat if you feel Upto doing that either by mail or phone,

take care

Heidi x

[Jool2504]

Hi Heidi,

Sorry to hear about your father, flaming PC its a nightmare.

My husband is on gemcitabine only and seems to be doing well, light side effects but I have been proactive and after a post on here I give him in anti sickness 4 times a day which seems to really help with the nausea, the hospital said take as and when. This way seems to suit him better, nothing worse than feeling sick.

Please to hear you Dad is gaining weight, William has just started putting weight back on and has a healthy appetite but little and often not large meals.

As mentioned in an earlier post, we are all here for you.

Regards

Jools

[PCUK Nurse Dianne]

Hi Heidi,

Sorry to hear about your father's recent diagnosis, this is obviously a difficult time for you all. If you wish to email the support line at any time we may be able to give you more information if you require.

email: support@pancreaticcancer.org.uk

Kind regards,

Dianne

[DRAD3]

Hi Heidi

Gem/Cap was the combo Gary was on and the combo that had a good effect (shrank the tumour!) so keep that in mind and remain positive. I posted a lot of info relating to this treatment under Clinical Trials/SCALOP if you want to read - it may help although remember that everyone is different. Email the support team who will give you lots of specific info re. the chemo and your Dad. We will continue to think of you and keep everything crossed that your Dad continues to feel good. Keep us posted.

lots of love

Deb

x

[yorkypaul]

Hi Heidi

can't offer advice on the chemo front yet as my wife won't know if she can have it till this Thursday due to falling through every loophole possible along this horrible journey. I would like you to know, though, that you are very much in my thoughts along with the rest of my forum family.If I feel I can offer any advice based on my experience so far, rest assure I will.

Hugs, Paul

[Blue-Eyes]

Hi guys thankyou for your lovely replies, it means a lot, it's nice to know that you are here and we are not alone with this terrible diesese, have been looking on the boards trying to navigate but not that good at it at the moment, will keep trying.

Kind regards xxx

[DRAD3]

Keep in touch, Heidi. I know it can be difficult to find your way around the forum but there is lots of info on here, current and historical so worth persevering! In any case, ask whatever you need to know and someone will help, as will the support team.

Take care

Deb

x

[Blue-Eyes]

Thankyou deb xx

[Blue-Eyes]

Hi guys well nearly a year on and my dad managed to have the whipple 3days ago, the chemo/radio shrank my dads tumour by half, he is in hospital and doing well.

I never thought in my heart we would ever get to this point but always remained positive and hopeful, it's felt like we have been on a roller coaster ride for a year.

Sending my love and best wishes to you all.

H xxx

[Slewis7313]

Hi Heidi, we haven't spoken yet but when your story was developing last year, I was being checked out for possible gallstones / ulcer which transpired to be good old Pancreatic Cancer. Not sure where mine is going as chemo / radiotherapy has helped, but not enough yet. It is however fantastic to hear that your dad's treatment has ultimately lead to surgery, though I know it would have been a very difficult year for you all. Please keep us posted as this is so uplifting and shows that the fight can be difficult, but once in a while (unfortunately not often enough) is well worth it! Recovery from the operation will not be a quick process, but please give your dad my regards and wish him well.

Nice to see some really good news in the world of Pancreatic Cancer!

Steve

[LindaH]

Hi Heidi,

Like Steve says this is fantastic news and gives hope to us all. My tumour reduced in size after Chemo from 49mm to 33mm and that was only after five courses of treatment, I have now finished all my Chemo sessions and had a CT scan 30th August, I hope to receive the results on Tuesday.

I'm trying not to build my hopes up as my cancer (like your dad's) travelled to my liver, but now I have been given a little hope by reading your dad's story.

Thank you for sharing and big hugs to your dad may he go from strength to strength.

Linda x

[Cathy]

Hi Heidi

That's great news about your Dad.

I hope he makes a quick recovery from his surgery and has continued good health.

All the very best

Cathy xx

[J_T]

Good news is always welcome. So pleased for your dad and the family Heidi. Hope he makes a good recovery from the op.

Julia x

[PCUK Nurse Jeni]

Hi Heidi,

That is brilliant news, and really shows the role for chemo/radiotherapy, when it is possible to give it. Lets hope that we see this being offered more and more in the UK to patients with inoperable PC.

I hope your dad continues to make a speedy recovery after the Whipples.

Do email us on the support line if you have any questions about what's next. The address is: support@pancreaticcancer.org.uk

Kind regards,

Jeni.

[Blue-Eyes]

Hi guys, not been on for a while but thought I would update you all on my dad, nearly 3 years since diagnosis of PC and after whipple my dads cancer returned not to his pancreas but to the flank muscle, he is on chemo at the moment abraxane/gemcitibine after first scan it showed the tumour had shrank quite a bit, he's finding this regime very tough being hospitalised a few times with a tempeture.

Scan scheduled again soon.

Think of you all often

Never ever give up hope

Best wishes

Heidi x

[WifeampMum]

Hello, I'm a first-time poster but long-time lurker. Like so many others I have found the forum incredibly helpful. The good news posts have lifted my spirits, the bad news posts have forced me to face and prepare for what may come. My heart goes out to all the carers who have lost loved ones, your posts have moved me deeply and I applaud your selflessness and generosity of spirit in returning time after time to the forum to support others. For sufferers and carers still on this journey, I wish you the very best.

I'm delighted to say that my husband's story (so far!) falls into the good news category, and I hope it will bring some hope and comfort to those of you with a similar diagnosis. Hubby was diagnosed with locally advanced pancreatic cancer (adenocarcinoma on head of pancreas) in May 2015. Within one week of diagnosis a Whipple procedure was attempted at our London hospital, but sadly it failed due to involvement of the SMV/portal vein. Instead the surgeon performed a palliative double bypass to relieve jaundice. The junior surgeon who saw us after the surgery said that the aim would now be to shrink the tumour enough for a second attempt at the Whipple, but the oncologist who saw us on discharge contradicted this by saying that any chemotherapy would be to "control" the disease. Our hopes of another Whipple were pretty much dashed at that point.

In June 2015, hubby began 6 cycles of modified Folfirinox. These were tolerated reasonably well (though he lost all his hair) and his CA19-9 dropped from 291 to 43. To our huge relief, the staging scan at the end of the 6 cycles indicated no spread and even possible tumour shrinkage. As expected - and as there was no metastasis - in September hubby started a course of chemoradiotherapy (with Capecitabine) in the hope that the tumour would shrink further. Also in September we consulted a different surgeon at the same hospital who told us that he didn't need further evidence of tumour shrinkage in order to take hubby to surgery again. The main qualifier for surgery was no metastasis.

Last week we got the results of the latest staging CT scan: still no metastasis and the added bonus of an indication of further tumour shrinkage. A second Whipple is planned for early February - yay!

Before I end this rather long post I'd like to say a big thank you to the wonderful nurses for their great advice and support along the way. Also thank you MSH for the heads up about bitter melon capsules and statins.

Wishing everyone well,

Wife&Mum

[Guest]

Hi wife and Mum.

Pleased to read you have decided to post. I hope you feel better for doing so.

It is a place no one wants to be, but we all know how each other feels, so it is a great comfort, which I hope you will see.

Your husband is doing very well, we need good positive posts in here.

I am not trying to dissuade you in anyway, so please don't think I am. It might be a good idea to start your own thread, that way if people are looking out for you, they can go straight to story and supposrt you that way. You could always copy and paste your post here, and start your own, save you writing it again.

Leila xx

[WifeampMum]

Thanks Fifi, if I decide that I particularly want people to follow our story I will start my own thread.

[PCUK Nurse Jeni]

Hi Wife & Mum,

Welcome to the forums, and thanks for your very uplifting post.

Great news indeed to see that the chemo does work in some cases, and that your husband will get the chance of having the operation to remove the cancer.

We would like to wish him the very best.

Kind regards from the Support Team.

[Ruthus]

That is fantastic news and so good to hear positive stories. I wish you all the best with surgery.

Ruth x