Has any one else been told that they ... - Pancreatic Cancer...

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Has any one else been told that they might not be able to have chemotherapy because the consultant doesn't think they are fit enough?

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Cathp
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Aw Cath I'm so sorry love...Dad was told that too. Have they said in which way you're not fit? Second opinion? xxxxx

Cathp profile image
Cathp in reply to

Hi Jayne sadly my partner lost his battle only 10 weeks after being diagnosed. He was just finishing his first round of chemo and the last intravenous knocked him for six- he had no other side effects before that. He ended up in hospital with severe diarrhoea and was subsequently dehydrated. They thought they could sort him out but unfortunately he started to bleed into his stomach and died 3 days later on the 22nd of August. has been a huge shock. thought he had more time.

Cathp profile image
Cathp

Hi Jayne

it is my partner who has the diagnosis of Pancreatic Cancer. Although, this isn't conclusive yet but most likely. He is to have a biopsy next week so hopefully that will shed more light. Because there are anormalies, e.g tumour marker etc no one will make a definite diagnosis..... yet!

He didn't know anything until 4 weeks ago when we were just about to go on holiday and he had a seizure and threw up lots of blood at the airport! Blue lighted to nearest hospital. Where the mass was found to be blocking the bile duct. Which had caused the problems with the liver and the subsequent jaundice etc. Since then he has been in hospital for about 2 weeks stabilising his symptoms, blood transfusions etc, plus banding veins in his throat tube. He has also had a stent put in this week to clear the blocked bile duct. So all in all has a pretty awful time and has obviously not at his best. He also has cellebellar ataxia - early stages which in inherited from his mother. So my question how can the oncologist may diagnosis based on that some symptoms could be due to ataxia and also some due to the trauma his body has been put through over the last month. He is 56.

One thing it has made him determined to eat more to put on weight which is happening and exercise more even though he is quite tired. As for second opinion, we are waiting for the results of biopsy and then seeing what this oncologist says he is willing to do and then get a second opinion from others. Do you have any suggestions about who to ask for second opinion - are the hospitals quite willing to send others all the scans etc. any info would be gratefully received. Thanks for you quick reply to my question.

mrs2dogs profile image
mrs2dogs

What area do you live? my partner had two different cancers this time last year - pancreas and liver but luckily they were two different cancers and they could operate after the oncologist did tests so he had the Whipple and now seems to be doing well. I only ask what area you are from because he attended Christies in Manchester and the best surgeon in the world at Manchester Royal Infirmary! If you did get a second opinion (and yes, they would not object to this) I can tell you the names of my partner's wonderful team.

Cathp profile image
Cathp

Hi

Thank you so much for that. We live in Salisbury. Our nearest cancer specialist hospital is Southampton. Although, my partner's oncologist is the specialist oncologist consultant at both Salisbury hospital and Southampton. So they would be looking at treating him at Salisbury. Will definitely be giving Christies a call once we have biopsy results or do you think they could do something with just the scans, images etc? Just feel we need to be hurrying this along, everyone seems so laid back about it or maybe that is just how it seems to me and these time scales are normal.

Cathp profile image
Cathp

Oh forgot to say, they say it is inoperable because it is so close to the portal vein etc.

cathdw1 profile image
cathdw1

Hi , i have pancreatic cancer now in my 21st month , i had a stent fitted in March , mine is also inoperable due to it being around two veins , i had 12 months of chemo which shrunk the tumour but it didn't shrink it away from the veins , maybe if your husband can get strong enough they will consider chemo , you need to be in as good as health as possible as chemo can give so many side effects ....hope this as been of some help x x

Cathp profile image
Cathp

Thank you so much Cath that has give me some hope, will pass this onto my partner. Am feeding him up and trying to get him to do as much as possible. Unfortunately his Ataxia doesn't help as it affects his balance which is made worse by being tired. But need to give him every chance possible but also gives him a good quality of life. Good luck with your health too - are you having any more chemo or is that only if the tumour increases?

Herbert profile image
Herbert

Hi Cath, Sorry to hear about your partner, we had a similar situation with my step-father. Hopefully you will know more after biopsy. If you haven't already been told the following, i would suggest you ask your partners oncologist. Has it spread to another organ? if not, why can't he have a total pancreatectomy? (if he re-gains fitness, as very invasive surgery). Has he had a CT scan, I'm guessing yes, based on the information you already have. A CT scan tells you if it has spread to other organs, a biopsy normally just tells you it's cancer not cystic. Most Oncologists via NHS and private use something called ECOG performance status when treating patients for chemo; if it's no to standard chemo, why not trial a clinical trial (chemo based) they tend to be a little less tight in guidelines. Second opinions are worth getting hospitals can share info, your partner shouldn't have to go through all these procedures again. Plus as you say, most Oncologists work at more then one hospital. A specialist hospital/Oncologist is the way to go, if you can, as they know everything about PC. My step-father had problems with his blood platelet count, if they go under 100 they won't treat you. Keep an eye on any potential blood clots i.e DVT/PE as this has a big effect on treatment. Sorry, lots of info but i wish someone told me this from the start so we could get on it. You need to push with NHS they are not quick, don't be afraid to ask and push. The Churchill in Oxford is one of the best in PC treatment in the Country and so is Royal Marsden for new experimental treatment (both NHS), however travel is normally a no-go. Cath you sound like you are doing a great job, it's very hard. Good luck to you and your partner. If needed, the flowing website has trained professionals that can help with all questions: personal help and professional advice. Check it out if you find the time! Best of luck and if you have any further questions, please don't hesitate to ask.

pancreaticcancer.org.uk/

Cathp profile image
Cathp in reply to Herbert

Hi Herbert Thank you for your reply. What a few weeks it has been. My partner has now had his biopsy which has shown that he has pancreatic cancer. He is going to have chemo, although I think the consultant is not convinced! But you have to give everything a go - then there are no regrets. He is having 2 types go chemo together - is this the norm? The consultant did say that he could have 3 but doesn't think he could cope with it at the moment. Is it Gentamicin and Gencap? Will know more on Tuesday when he has his first meeting about the chemo. We have had some disturbing news that the blood tests he had, the results were rung back to the surgery the same day, but our doctor didn't ring us until 6 days later when he had already ended up in Bristol hospital after having the seizure etc. Although, the PC would be the same we wouldn't have had the issues at the airport where he had a 50/50 of surviving. Plus all the blood transfusions, endoscopes etc. Do you know if this has happened to others where information , test results are given quickly?

It just seems like one more hassle that we don't need! Anyway, enough of my rant. Thank you so much for all the information you gave, has been really helpful. Take care.

Cathp profile image
Cathp in reply to Herbert

Hi Herbert sadly my partner lost his battle only 10 weeks after being diagnosed. He was just finishing his first round of chemo and the last intravenous knocked him for six- he had no other side effects before that. He ended up in hospital with severe diarrhoea and was subsequently dehydrated. They thought they could sort him out but unfortunately he started to bleed into his stomach and died 3 days later on the 22nd of August. has been a huge shock. thought he had more time. Thank you for taking the time to reply to me and all your helpful advice.

Herbert profile image
Herbert in reply to Cathp

Hi Cathp, I'm really sorry to hear your news. PC is very cruel. My thoughts are with you and your partners family and friends. Take care.

Cathp profile image
Cathp

Thank you so much for replying and I am so sorry to hear your sad news about your dad. It is just such a shock - my partner was on his first course of Chemo Gemcap and had no side effects from the first part but had severe diarrhoea from the 3rd set and became severely dehydrated very quickly over a weekend. His oncologist said they could sort him out in 48hrs and then he would go home. Unfortunately the cancer apparently was growing too quickly and he started bleeding in his stomach and 3 days after being admitted to hospital he died - couldn't believe he could go down so quickly. We were due to be married but had to cancel when he was admitted to hospital. He was only 56. I am like you probably still trying to come to terms with it all. thank you for your huge support and I am sending you my support and huge hugs. It can be a very cruel world. My father also died of Pancreatic cancer.