My dad

I'm another newbie who 2 weeks ago found out the devastating news that my dad has pancreatic cancer with liver metastasis. It's been a total shock, he's only 48 years of age and we have no previous history of this cancer in the family. They first told him that it had passed onto the liver and that a biopsy would be taken to determine the type of cancer that he has, but when performing the biopsy. My dad was told it's too minute to take a sample off the liver,is this a good thing does this give us hope that it will shrink enough to have surgery at some point? Has anybody known anyone who has had the pancreas removed totally? If we went privatly or over to America do they treat it with different things in other countries with better results?

I just wondered if anybody was being treated with the chemo capecitabine? My dad has only been on treated 5 days and he was rushed into hospital as he got dehydrated as it made him so sick. Has anyone got any advice on how to keep his sickness at bay and appetite up? As his sickness tabelts just arent helping. They have stopped it for a week to let his body rest but start again on Monday.

I ask all these questions on here as I need advice and my dads consultant wont give me answers due to me not being him/his wife.

I would love to hear some good news of others that have faught this cancer, to helo keep him going!

He's such a gentle giant, a loving dad and adoring granpa I'm not prepared to give up on him yet and would give anything if it meant giving him longer with us!!

It is a huge shock isn't it? I am sorry, Ezobor, that you had to join our little band. Here though you will find total understanding. We have been where you are now. Are your dad (and mum?) asking lots of questions? Do they have a palliative care nurse, maybe a macmillan nurse (or marie curie). These nurses are really skilled at helping people and are well worth talking to. Treatment wise, some people do really well with chemotherapy, but the sad truth is that for many the diagnosis comes too late in the progress of the disease. Reading the other threads in this forum will give you a good idea of the sorts of things that happen. And then ask us all the questions you like and we will try to answer you honestly. Don't forget, too, that you can email or ring the PCUK nurses - they are really helpful. hth, love Sue, xxx

Hi Ezobor

I am truly sorry to hear about your Dad and my heart goes out to you both.

I was diagnosed with PC in Sep 2011 and its been a tough journey but I'm still here. I know it's hard but do try to stay positive.There is always hope, try reading some of the real life stories on this site, it helped me.

Re your dads sickness, I was given anti sickness meds through the drip prior to the chemo which helped, also drinking ginger tea seemed to give me some relief.

Sue.x

hi there, a very quick post, please click on my name and you will be able to read my posts on my husbands journey, secondly, ask your father to give his permission for you to be able to discuss his case with the drs, you will then be able to ask what you want, of course your dad may want to protect you? you really need to tell your dad how you feel,

wishing all of you good luck, and "positive mental attitude" [ P M A ] love laura

Hi - so sorry to hear about your Dad. You must be devastated and desperate to get as much information as possible. You are in the right place. I do suggest you contact the support team here, by email or phone as they will be able to advise you about the specifics of your Dad's case - you will have gathered by reading other threads that every single case seems to be very different. My husband was on the tablet form of capecitabine (assume it is only in tablet form?) and didn't have too many side effects and certainly didn't suffer with sickness much at all so it just goes to show how everyone is different. It might be worthwhile having a chat with your Dad about how you can get the information you need and want. It is understandable that he may not want to know (my husband was the same) but perhaps he would give his consent for you to ask certain questions so that you can provide him with the best support possible. Do find out what community nursing is available to you (macmillan and the like) as they are absolutely wonderful at providing information to patients as well as thinking about what the family as a whole needs. Wishing you well and do keep us posted and ask for our support whenever you need it. We are always here for you.

love

Deb

x

Hi Debs/Ezobor,

Absolutely correct Debs - capecitabine only comes in oral form.

However, it is similar to the agent 5FU, which is given intravenously, and sometimes, a person can be switched from one to another, if one agent is not suiting them. They do have similar side effects in terms of diarrhoea, and sore hands and feet, although, the tablets seem to cause more of this.

Jeni.

Hi Ezobor.

So sorry to hear about your dad. Click on my name for my past posts as mine is a good news story that started out a very bad news story for my dear dad. Keep positive and do no give up hope, sometimes the impossible becomes possible.

Carmel x

Thanks so much for your replies and support. I haven't been on the site for a couple of weeks and it's lovely that people have taken there time to write replies to me

As for my dad it was his last chemo treatment yesterday and a scan on Friday to see if there is any change. Since finding out this devastating news I have read lot's of stories that started out with no hope and are still full of promise. I just hope that my dads has shrunk enough to operate or at least something for the horrendous three months of illness he has had from the Chemo side effects.

I just wondered if anybody knew what the next step is after chemo if it has or hasn't worked where will we go from here?

Thanks again

Hi Ezobor - lovely to hear from you and keeping my fingers crossed that scan goes OK on Friday. I assume it will be a few more days before you get results. Try not to second guess what will happen - everyone is very different but I understand your need to know or prepare yourself. I always went into appointments prepared for any scenario - improvement, no change or worse. In my husbands case, the first lot of treatment (GEMCAP) shrank the tumour in the pancreas, the second lot (GEM and radiotherapy) resulted in no change in the pancreatic tumour but new lesions appearing in the liver (his original tumour was wrapped around blood vessels so this was always a possibility), the focus then became more on the liver and he was offered more chemo, and so it went on - I think my husband's cancer was particularly aggressive but that is certainly not the case for others. You will read other stories where treatment has done great things so keep those in mind and stay positive and ready for whatever is suggested. Keeping everything crossed for your Dad and of course you and your family. Do keep in touch.

love

Deb

x

Thanks for everyones support and views at this difficult time.

We had the results from dads scans and it was better news than we had expected.

His cancer spots on his liver have shown shrinkage due to the chemo and the pancreas cancer tumour hadn't grown. Dad was a little disappointed that the pancreas tumour hadn't shrunk but it was explained that it was still very good news at least it wasn't growing.

I'm now in the process of trying to get my dads records so I can get a second opinion and a first opinion on nano knife/ cyberknife. His consultant says that my dad isn't able to have surgery and the tumour is inoperable but i have heard and read that some people get told that and the out come changes after Chemo or a second opinion consultant says they will operate.

This is all that my dad wants for this horrid disease to be taken from his body with an operation. He has yet another 3 grueling months of Chemo (which he started last week and is making him terribly sick) then they will give him a break.(in which we have to pray it doesnt grow again!)

Has anybody sought a second opinion? if so did you have to pay for your medical records to be released to you?

Thanks again everyone, everyday I pray and hope for shrinkage or a miricle!

Great news! To have no growth on the original tumour and shrinkage in the secondaries is a good result. Hopefully, continued chemo will do more good - fingers crossed. I hope your Dad isn't too unwell and copes OK. Sorry, I can't help with information about second opinions - not a route I have any experience of. Hopefully, others will? Keeping hoping and praying and keeping positive and we will do so on your behalf. Let us know how you and your Dad get on, won't you?

lots of love

Deb

x

Thanks Ezobor for your questions,

I am sorry to hear your father is having a difficult time throughout his chemotherapy journey, and hope that things start to improve soon. It is good news that the liver metastases have shrunk, and also that the pancreatic tumour has not grown further.

I will email you with information about how to access a second opinion as this can be rather lengthy and hopefully you will find this helpful.

Best wishes,

Dianne

Support Team

Thanks everyone for your wonderful messages and information it's really helped me get through a very difficult time!

After 3 weeks of hunting down secretaries and filling in endless forms and phone calls. I have finally managed to get my hands on Dad's records. I have sent them for second opinions to two different hospitals and await the feedback this week. i just hope that there is light at the end of this very dark and dismal tunnel. My poor dad is really suffering with his Chemo every time he has it, he's so sick he has to take to bed for days! To see a once strong man and hero of our family, weak & so tired is the most heart wrenching experience i have ever had to endure. We are sticking together and staying strong for both him and my mum. As the constant weight of his illness weighs on her the most.

I will let you all know updates on Second opinions as soon as I hear.

Keep praying and posting it's the only thing that keeps me sane some days

Has anyone or does anyone know of a patient who has had nano knife for pancreas cancer I'm looking into it as an option for my dad

Hi there - so lovely to hear from you and good luck with the second opinion. We will all, I'm sure be interested to hear what happens there.

So sorry to hear how unwell your Dad is with the chemo. It is so unfair that some people suffer so much. I often wonder why we get such a variety of experiences but I guess that is because everyone is so different and their PC unique to them.

I am sure you are worn out with the worry - about your Dad and your Mum but also because you are working so hard trying to find better treatments. What a star you are - I have nothing but admiration for you, keeping strong and positive - well done.

I do hope you can find out more about nano-knife - I know others on the forum have investigated this too so may be able to share some info with you.

Sending you love and strength.

Deb

x

I haven't been on here for a while it seems the last 6 months have been a whirlwind but just wanted to give an update and get some advice.

My dad was told Nanoknife was not an option that we should go for from his consultant. So we decided as a family against it and he carried on with the GemChem Chemo for 6 months. He was so brave and so ill for the whole 6 months by the end of the course his body (mental state) was in tatters. He has been on a 3 month break recently and was begining to recover and become himself again, but we were dealt a severe blow yesterday when he went for a routine check. He was told the cancer is growing again and with an aggressive force!

We are devastated as is my dad. We have been told he can take part in a medical trail starting next week and just wondered if any one has been on this drug, dealt with it, heared anything about it? I'm just compiling as much info as i can before we as a family make the decision on whether he should take the chance on such an agressive treatment.

It's called MM-398 with 5-Fluorouracil & Leucovorin. It's also gonna be given through a line in his chest which we haven't had before and don't know what to expect can anyone shed any light please!!

I also just want to say a massive thankyou to everyones nice replys and message of comfort to me at this hard time. It's nice to know we aren;t the only one dealing with this daily nightmare!

Thanks again

Hi,

I can't offer any advice on the chemo regime but maybe specialist nurse on the site can, perhaps drop them an email? I am so sorry to hear your dad is so unwell and facing difficult decisions, my heart goes out to your family, it is such a cruel disease and there are no easy answers.

Good luck and keep us posted

Bee x

Hi Ezobor

I'm sorry to hear your Dad's disease has progressed when he seemed to be feeling better.

There is a link on this site which seems to be the trial they have suggested for your Dad. http://www.pancreaticcancer.org.uk/information-and-support/clinical-trials/trials-for-inoperable-pancreatic-cancer/napoli1

I have no experience of a line into a chest althogh I know it's not ususul. I'm sure the nurses on this site would be able to provide you with more information on it (how it's insterted, cared for etc).

All the very best

Cathy x

Thanks for your replies and advice.

I will keep you updated as he goe's along.

I pray for a cure everyday

Hey Guys

Just wanted to give a little update on my dad's journey so far. It's been a pretty miserable week for him. He started his new medical trail on Tuesday last week and he's been so ill since! He couldn't keep anything down even sips of water all last week which lead him to loose a stone in a week we rushed him in a ambulance to the hospital on Sunday morning after ringing the Christie Hotline and he's been in hospital till yesteday. He has been given a permanent driver for anti sickness drug that is being adminstered through a drip 24 hours a day and he's still struggling to eat. He's also been in agony with very bad pain (which my dad is a tough cookie so the pain must be bad for it to be bothering him). We are hoping that all these ill effects will be worth it and this new drug will be our miricle that we are praying for.

I would be gratful if anyone had any tips or stories for counteracting affects of chemo that they have tried themselves as we have exhausted most areas!

Sorry to hear your dad is having such a tough time. PC is a horrible illness.

I'm afraid I've nothing useful regards the sickness. Are you in contact with Macmillan regarding the pain? They are usually very good at getting this under control.

I hope you can get your dad comfortable soon.