Husband recently diagnosed

[Nardobd]

Completely out of the blue my husband, Ted, was diagnosed as having locally advanced PC which is not operable because it involves major blood arteries/vessels. I guess we are still in shock - I keep waiting for someone to tell me how to feel or think (other, of course, than the whole "it's not fair- he doesn't deserve this", which I anticipate everyone goes through). I'm told by our nurse-liaison that I'm asking all the right questions but I feel completely out of my depth and it all seems a bit surreal at the moment. Ted's got a very positive, fighting attitude and is going to start Chemo soon (Gemcitabine). The consultant said that there is a very small benefit by adding capecitabine but that was more than outweighed by the additional side effects. Does anyone have any thoughts on that or links to data which shows the benefits please? Also I'm told that only two 3 month cycles of Chemo will be available. Has anyone had more than two? If so, I'd like to hear from you.

I should make it clear that I'm not second-guessing the consultant or asking for medical advice but I'm just interested in others' experiences - no liability attaches to anyone replying to this or to the organisation for any information given, which I understand is strictly personal to each individual and will only be used for the purpose of further discussions with the consultant/nurse specialist on a strictly "no names given"/confidential basis.

[kezza1]

I was diagnosed inJuly of last year,had an attempted whipple in August. It was unsuccessful because of vein involvement, so then went through 3 cycles of chemo with the last cycle running concurrently with radiation, 30 days of it. I then had a wait of a month and a half before an EUS and CT scan suggested possibly that the tumour had shrunk and pulled of the vein so another go at a whipple was decided on.

On opening me, the doctor did indeed find that the tumour had shrunk and was of the vein.The previous whipple found the Tumour at 5cm with investigation showing no lymph node involvement and no matastasies,the second whipple showed the tumour was now 2.5cm with still no other involvement anywhere else,the lab calling it a stage1.

My 2nd whipple surgeon was trained at the Mayo Clinic in the US and vein involvement did not concern him at all as he was prepared to resect the vein if there still was involvement,as it turned out he resected the vein just so that I had very good margins. Although my first surgeon came very highly recommended he was not trained in vein resection and perhaps in hinde sight my second surgeon would not have balked had he been doing the the first whipple.

I have been told I am cured ,we will see, but i remain very positive am having 3 more rounds of chemo to 'mop' up any nasties.

The whipple itself was easy for me, out of hospital in 14 days, but back in that same night with a pulmonary embolism another 14 days then back home been home now 3 weeks and am feeling stronger every day.Only problem I have had is with digestion of fats but ccreon has helped there.Oh another problem is the very short warning I get for a bowel movement, but am eating anything and everything.

I wish you well and most probably have not answered any of your questions properly so please feel free to ask me anything and I will try to be as helpful and truthful as possible.

[Nardobd]

Thank you Kezza, your story gives us considerable hope! We're now at the end of the first month's chemo and awaiting the results of the CA19-9 (tumour marker) test which will give an indication of the effectiveness. I hope that this has provided a cure for you and that all goes well from here on.

Kind regards

Nicki

[emcee46]

Like yourselves, we seem to have received the diagnosis for my partner at about the same time.

Although, like yours, it was described as 'locally advanced' the one my partner is suffering is quite a rare and even more difficult to treat adenosquamous carcinoma. However, although I'm still a total beginner at this (as, I suppose most of us are), the research I have managed to complete shows that you really have to be as speedy and as aggressive as you can in fighting this equally aggressive cancer.

I'm sure your doctors have a good reason for doing what seems to be 'holding off' (layman's opinion again!) on the chemo but I don't understand why, if your Ted's in pretty good general health, they aren't going for a more aggressive combination of drugs? My partner's been put on Gemcitabine and Cisplatin (a platinum-based drug) which, from the reports I've seen, suggest a better long-term survivability than maybe Gemcitabine alone - or even with Capecetabine.

The doctor did tell us that, as Cisplatin was more toxic than Capecitabine (I believe), he had to satisfy himself that she was up to the rigours of taking it ... and decided she was. We'll have to wait and see, but I'm personally happy that she has that combination as opposed to Gemcitabine alone.

[Nardobd]

Hi Emcee

Thanks for sharing your experiences and I hope that your partner is still doing well. It may be the difference in types of tumour dictates the chemo drugs used but I will ask about it when we see the consultant next week. We have been encouraged by the results of the last CA19-9 (tumour marker) blood test - after two sessions of chemo Ted's had reduced from 835 to 279! I know that the CA19-9 isn't the be all and end all, only an indication, but it's positive news!

Kind regards

Nicki

[john]

My husband John was diagnosed with inoperable adenocarcinoma in early February. The duodenum ws involved by that time and the lymph nodes nearby.

In March he was offered Chemo, with a six month prognosis without and a possible extra six months with!

We dragged ourselves through one cycle but by then he was physically and emotionally exhausted. He was sleeping 18-20 hours a day and had almost given up eating entirely.

The Oncologist withdrew the offer of further treatment after a three week rest period and said,'now it is up to your GP etc. to look after you.'

He is now fading away, still sleeping, still not eating, but relatively well pain controlled.

I asked the Oncology Nurse who was named as his special nurse when do you start the counting from?

Do you start from when he first became unwell?

Do you start from when he was diagnosed?

Do you start from the first Chemo treatment?

All she did was shrug her shoulders!

This site is new to me today. All I have asked for from the NHS and the Charities I have contact with is to be able to speak to someone who either has been through what I am going through, or is at present going through this horrible disease.

They have been totally unable to help...

Imagine my delight when my daughter found this website and put me in touch!

Forgive my rambles, but a lot to get off my mind!

Heather

[chinup]

Dear Heather

So sorry to hear about John, there are many of us here who completely understand what you are facing now and how you must feel. Pancreatic cancer is a particularly aggressive disease and a lot of us have gone from ok one day to total despair the next and it is very often the case that the doctors have been unable to give us the answers we need. I'm also very sad to hear of the poor treatment and lack of support you have had from the oncology nurse, etc, there is really no excuse for that. Are you in touch with Macmillan nurses or has anyone mentioned hospice care? Have you had much contact with your GP? I suppose it is all happening so quickly you haven't had time to build up support systems.

I think it is your GP who you should turn to now. They should be able to ensure that you have all the medical support you need if you choose to look after John at home or they should be able to make a referral to your local Hospice. Can you phone the surgery tomorrow - your GP should have all the notes and details, etc.

My mum lasted about a year after her initial diagnosis (same as John's) - she had 6 months of chemo which was awful, it may have prolonged her life but at what a price. She had a spell in hospital and then they said she had less than 3 months to live, they put in motion a 'fast track' process to get her home with special bed, equipment, etc and arranged for daily nursing care. The GP came to visit and when she realised things were getting very bad she rang the hospice and Mum was admitted that evening. The Hospice care in the last couple of weeks of her life was outstandingly good for both her and my dad who they practically allowed to move in because they couldn't bear to be apart. It made up for a lot to be honest.

I really don't know what else to suggest except to urge you to get onto your GP asap and get them to help you - it is your right and the very least you deserve. Lots of people here will be ready to offer help and advice so please ask, you are not alone.

Kind regards to you and your family at this very difficult time XX

[Nardobd]

Heather, I'm so sorry to hear about John and your difficulties in getting appropriate care and advice. From the moment you recieve the diagnosis it's like being on a roller-coster isn't it? Everything just seems out of control and I can well understand your need to speak to people who have been or are in the same position.

Everyone reacts differently to chemo and there's always a quantity/quality issue - the extra time is wonderful but, as Chinup says, sometimes it is at a great cost. I'm glad to hear that at least John has good pain control.

The Oncology nurse specialist must have seemed very uncaring. What she should have told you is that the timescale given can only be a ballpark figure anyway, purely because each individual is different. Some greatly exceed the estimate and some, sadly, fall short. One of the things I've found hardest to learn is to take one day at a time. I've always planned and considered the future but now I can only be thankful for today because I don't know what tomorrow will bring.

Don't worry about rambling on. We've all done it. Sometimes I just need to ramble, even if I'm repeating myself, just to get things straight in my head. Anyway, I can talk (or type) for England!

My thoughts are with John, you and the family at this traumatic time and if there's anything we can do please just shout.

Nicki xx

[john]

Thank you so much for yoour responses to my outpouring! Since then I have had much more contact with both GP and Community nurses. John has been offered a week of respite care at the local Hospice starting next Tuesday, and has agreed to go.

He is so weak and thin now that I am getting worried about pressure sores as he is spending so much time deeplyasleep and not moving, and we should behaving a mattress arriving very shortly.

His voice is badly affected too, and I wonder whether this isjust the effect of exhaustion or is a symptom of a spread to the lungs which I belive is a possibility?

We were hoping to go away fo the weekend, but John himself decided that he was too weak to cope with the upheaval, much to my relief. I could not bear the though of him collapsing while away from home!

Our MacMillan nurse has come on board now, and is reasonably helpful, but the GP and Comm Nurses are going to be my mainstays I'm sure.

We have a local charity which offers Palliative care and their volunteer doctor has come to give John acupuncture to help with the sweats, pain and appetite. Yesterday she turned up with six freshly laid eggs from her own hens. Two from Gertrude and four from Hilda!!! Aren't people wonderful!

You can see that this posting I have decided to look at th glass as half full rather than half empty! IT DOES HELP!

Your understanding has helped a great deal.

Many thanks

Heather

[Nardobd]

Hi Heather.

I'm glad to see that the support systems are falling into place and that you're feeling a little more positive. I hope that the week of respite care will be of great benefit to both of you. Yes, pancreatic cancer can spread to the lungs but the doctors would need to do more tests to ascertain whether that is actually what has happened and I'm sure that you wouldn't want to put John through anything more.

The volunteer doctor sounds wonderful! Those will be the best eggs you've ever tasted.

Keep us in the loop as to how John's getting on from time to time and don't forget that if you ever need to vent we're here.

Kind regards

Nicki

[rach]

Hi Heather,

Sorry to hear about your husband. My mum has just been diagnosed and we are still going through the surreality of it all. My mum has been told that the tumour is inoperable as blood vessels are involved and is waiting to go in to hospital for biopsy next week to confirm then we're off to see the Oncology Dept at Kent & Canterbury to discuss chemo options.

Kezza.... In one of your posts you talked about the second surgeon you went to who was trained in surgery involving tumours with vessel involvement.... who was this surgeon and which hospital? My mum has been told that her tumour is inoperable because of this and is due to start chemo soon. She is relieved slightly not to have to go through the ordeal of surgery and recovery at the moment but it was such a blow to be told that surgery was not an option. But, from what you say.... it may be possible if the tumour shrinks through chemo and I would like to know more as this may give us some hope, although I fully appreciate that every case is different.

Regards

Rach

[Nardobd]

Hi Rach and I'm sorry to hear about your Mum. Strangely, although I was pressing for surgery on my husband, he is actually very relieved it wasn't possible. There are also different views as to whether surgery is the "cure" which I thought it would be - I've read online recently that in pancreatic cancer there is often recurrence after surgery. I should stress that I don't know whether or not that is true - it's only something I read.

When I asked Ted's consultant whether chemo was likely to shrink the tumour enough to make it operable the consultant thought that unlikely. However, everyone has different views and each individual's situation is different so you might want to ask about that when you visit the oncology department.

My thoughts go out to you.

Nicki xx

[LilyG]

Hi, I am new to this website. In January 2007 my husband was diagnosed with Renal Cell Carcinoma and within 4 days had his left kidney removed along with an 18cm tumour. We were coming up to 2 years clear in April when we were told that there was an anomaly on his pancreas. He then went through a series of investigations to be told in June that he had the all clear but they would send the results to the Marsden. We were called into the Marsden at the end of June thinking they just wanted to see us but we were told that there were 2 tumours on my husbands pancreas that had been growing over time and it was likely that he would need his pancreas and his spleen removed. An MRI scan was scheduled for July 1st (our wedding anniversary), then followed a PET scan and a laparoscopy which suggested that the operation was viable. We couldn't get an NHS op so we went private but that was still 12th August. After a 5 hour wait I was told that the tumour had encased my husband's coleiac artery, stomach and bowel and there was nothing that they could do but stitch him back up. We were then given the bad news that the tumours weren't mets from RCC but new pancreatic primaries and that Chemo was our only option. I was interested in Kezza1's post as I too had seen that arterial resections are performed in other parts of the world - I do not know how to contact Kezza1 directly but the name of the surgeon and the hospital would be useful if, and miracles do happen, the tumours shrink back to make another operation possible. My husband is now on his 2nd cycle and tolerating chemo quite well but it hurts watching him with our young children (8 & 6) - he himself is only 47, L

[Nardobd]

Hi Lily and welcome to the board. I'm so very sorry to hear about your husband's new primaries. It's devestating for all of us to receive the news but it must be even worse in circumstances such as you describe.

There is currently no facillity to contact other members directly. Normally, if I want to contact someone in particular I put a new topic with "Message for " and most people respond to that pretty well.

Let's hope that your husband's chemo does the trick and eventually facilitates an operation to remove the tumours. Of course, all of us are, or have been, on the same roller-coaster and it does help to know that you're not alone. In the meantime, therefore, let us know how you're both coping and if you need to vent, ask questions or just share please leave a message on the board.

Kind regards

Nicki

[Ellie]

Hello Lily

Soo very sorry to read your story. How cruel is life that this can happen to your husband? You think you are over the worst and then he gets a second cancer. I feel for you so much, especially with having young children too.

I can't help with the info you are looking for, but just wanted to say that I am sending you my thoughts and best wishes. All of us on here are going through similar situations and it does help to know that others understand. We are all hoping and praying for a miracle, too, so don't give up, stay strong and positive and make the most of every day that you can.

Keep in touch and we are all here if you need to talk.

Love

Ellie

xx

[Juliana]

Hi Lily,

Thanks for posting on the site and sharing your story with us.

Whilst having my whipple, a main artery was compromised and I needed an emergency 'patch up' of sorts to stop me from bleeding out. My surgeon at the time is rated as one of the best in Britain for performing Whipples, but it wasn't him who did the intricate vein surgery. If you like, I can try and contact him and ask whether the surgeon who performed that tricky part of the operation would be someone who could undertake what you are looking for.

What I would need to know is whether the only reason they didn't proceed with the surgery was due to the involvement of the artery, or if it also was the involvement of the stomach and bowel.

I can understand how devasting this is, especially with such a young family, I have 3 young childre, 6yrs, 4yrs and 23 months......it truly is the hardest part for me, watching my children and wishing this wasn't happening to us.

Kind regards,

Juliana

[LilyG]

Thanks for your thoughts. We have just come back from the hospital: Cycle 3, Week 1. Doctor has said that his bloods are OK and that the Tumour Markers aren't too high but then they weren't at the start which was probably why we were given the initial all clear but, as I am sure you all know, this bloomin' thing is so difficult to diagnose. You would never know to look at him what is going on; he is still at work and everything else is normal: appetite is better than before but that's also down to the fact that he's trying to rid himself of the horrible taste in his mouth.

L