How long after a Whipple does chemo start?

[Guest]

My stepdad was diagnosed Friday, he's having a whipple today (right now as I type actually), I am just wondering how long he will take/ be given to recover before the chemo will start?

[Guest]

Me again, its now 9.40 p.m. he came through the op fine and surgeon found no nasty surprises. It took 6 1/2 hours to do the surgery.

[Claire M]

That was quick to be diagnosed and operated on so quickly! Hope the op went well. It will take time to recover as this is major surgery but take things slowly. my Mum had her op over a year ago abd started chemo about 2 months after. She is still doing really well.

[Guest]

Thanks guys. Yes we were amazingly lucky to get op so quickly - jaundice Tues, admitted Thurs afternoon, diagnosis Friday, op yesterday. What a turnaround. Just been to see him in HDU and is sitting up and talking. About 20 tubes coming out of various bits of him. However itching almost gone and am sure he looks slightly less yellow. One hurdle over (phew) but I know this is just the start of a long journey.

[Guest]

Day 5 post-surgery now and doing OK.

[gillvb1]

My dad was diagnised on Friday 26 September 2008 and will have his Whipple surgery on Wednesday 1 October 2008 followed by chemotherapy. My dad has Stage 1 CP, can anyone tell me what the prognosis is for his condition please. Looking forward to hearing from you, Gill

[gillvb1]

My dad was diagnised on Friday 26 September 2008 and will have his Whipple surgery on Wednesday 1 October 2008 followed by chemotherapy. My dad has Stage 1 CP, can anyone tell me what the prognosis is for his condition please. Looking forward to hearing from you, Gill

[lorraine]

Hi Gill

My dad was diagnised in may he had the whipple surgery in june this year,it knocked him for six for about 6/7 weeks .but with my dad it had attached itself to the main vein that feeds the liver so were unable to remove it.

He started chemo last week as it takes about 7/8 weeks after op before chemo can start,as they need to build up weight and strength.With my dad it has now spread to his liver Heis on a course of chemo is for 3 months.Docotors said to my dad that if it works then he may have 2 years but if not and it keeps spreading then less than a year.Iam not sure if that time scale is from diagnises or from july when he saw the docotor about chemo.(i didn't like to ask that question)

I hope your dads op goes well,keep me informed or if you would just like to chat about things

My dad just turned 60 at the begining of may how old is your dad.

Take care

Lorraine

[gillvb1]

Hi Lorraine, thank you for your reply and for your support. My Dad is 74 years old but has plenty of life left in him yet. He's always been very active and it's so unfair that he of all people should be struck down with something like this. He doesn't smoke or drink much at all. I know there is a chance that the cancer may have spread but I'm really hoping that they get it all when they operate. I am sorry about your Dad, and thankful that you gave me an idea of how he was post operation. I would like to let you know how things go - I'm like a rabbit in the headlights at the moment. Kindest Regards and best wishes for your Dad.

[lorraine]

Hi Gill

It's me again just abit more info on how dad was when he had op.

He did have afew tubes around him,but he didn't look as bad as i thought he would.He was very sleeply for about a week after, i would talk to him and then suddenly he would be asleep.Sometimes he found it hard to keep his eyes open . He had an pain block in his back which was taken out on day 4 (after op)then it became slightly more painfull again and he had to manage the pain by button himself,He also started to feel sick so they gave him tablets for that .I would say any pain or sickness tell the nurses straight away to keep ontop of things for them, that i have learned .He was not aloud to eat or drink for i think it was 4 days he could only wet his mouth,as they wonted to make sure everything inside was healing.Then he was aloud to sip water.If he drank it to quickly then it would bloat him which was painfull.So remember get your dad to have really small sips to start with.Then he was aloud liquid food which was fed by drip.My dad did lose more weight and that was abit shocking but he has slowly put some on not all but some.Day 6 he was aloud some jelly and a hot drink he wasn't aloud home untill he had eaten some food only a small amount.Also they get them up walking asap only small sets at first.Comming home watch out for bumps in the road as my dad found it painfull and if you have a long journey home we had 1 hour take a drink for them as dad needed sips of water.

Its funny but i thought when dad gets home give him aweek and he'll be up walking around ect.. No he was in pain and slepted most afternoons for the first few weeks .He would get up in morning then need to go bed for a few hours,he didn't sleep much at night but i think that was worry.Slowly as the weeks went on he got better we still had good and bad days but he started to go for walks in morning and then afternoon.He also found that staying in bed alittle later in the mornings ment he would stay up till bed time.Plus the doc's did say he had to get out of that habit of afternoon sleeps. Food = it did take alittle while for dad to start eating bigger portions he was afraid to eat at first,because some foods upset him,but now hes eating more.As for pain make sure he takes his painkillers on time as dad has been late afew times and has paid the price as it knocks him back for the whole day.

I hope this helps abit

Lorraine

[gillvb1]

Hi Lorraine,

Thank you for explaining how your Dad was post operation. My Dad has gone into hospital today for his operation tomorrow morning. You've given me some very helpful pointers which will prepare me for the weeks to come. It's all very daunting - I've had a headache since Friday! I shall take your tips and write them down so that they are at hand when I need them. Thank you again for taking the time to write to me, I will keep you posted if you don't mind. Kindest Regards, Gill

[gillvb1]

Hi Lorraine, can you tell me how active your Dad was when he first came out of hospital, for instance, could he use the stairs?

[lorraine]

Hi Gill

Hope everything goes ok for your dad,will be thinking of you.

Dad could use the stairs,he was bent over abit as he walked,which was also very slowly to start with.It must have been about week 4 that he started to feel better and to go for walks ,he started with small walks to the end of the street untill he felt well enough to walk around the block which by week 6 he was doing twice aday. But he still has days when he feels under the weather. The first 2 weeks have to be total rest,dad did find it hard to get into bed on his side of the bed, he found it better getting into bed on the other side.Its a big op and it does take awhile to get over, dad had 33 metal clips across his tummy which are taken out after aweek .I would say let you dad rest as much as he can ,and start to do small things then build it up.But he will know then hes done to much, he needs to listen to his body and if he needs to then rest.

My dad could only sleep on his back and still now he finds it hard to sleep on his side .Sometimes if he has pain in his tummy he finds putting a pillow under his legs to lift them up abit helps.When dad was in hosp after the op they gave him a cough pillow,because he didn't move around and to stop a build up on the chest/lungs dad was told to take deep breaths and to cough .The pillow was helpul as dad held it to his tummy everytime he coughed,dad became quite attached to it.

Its hard to see a parent or anyone go though this, and sometimes ive felt quite helpless but its just being there for them even if no words are spoken.

Are you going to care for your dad?

Please let me know how things go.

lorraine x

[gillvb1]

Hi Lorraine, thank you for the invaluable tips which I will feed back to my family when the time's right. My Mum will be with my Dad when he gets out of hospital but she's not very mobile (failed hip operation). I have two sisters and between us we will rally round and help out where we can. Social Services has also offered to help but in what way I am not sure but we will take all that is there. I'm leaving the office now to spend the afternoon with my Mum - my 5 year old will keep us occupied! Speak to you later with hopefully some good new on how the operation went, Gill x

[gillvb1]

Hi Lorraine, well Dad has had his op today, he went into theatre at 10.00 am and came out at 5.30 pm. I know he's alive and kicking because I could hear him speaking very loudly whilst I was speaking by telephone to the nurse! The nurse said my Dad had just come out of surgery and wasn't all there yet - I could tell! but he was fairly coherent because he was asking which of his daughters was on the phone.

I've been feeling extremely stressed out today but at least the first hurdle is over and we can take each day as it comes. I passed on some of your advice to my Mum and we feel better prepared now - it's been such a whirlwind that we would never have gleaned such information elsewhere - I know everyone is different and we may have challenges ahead but at least we have an idea of what to expect.

The nurse said that the operation went well but I guess we shall have to wait for the Consultant to tell us exactly how successful he feels the op went and if they found anything else. Fingers crossed. Gill x

Edited October 2, 2008 by gillvb1

[lorraine]

Hi Gill

Really glad to hear your dads op went well today,i bet it felt like the longest day ever.

Keep strong and and let me know how he gets on.

Lorraine x

[Ellie]

Hi Gill

Sorry to hear about your dad. I know what you are going through - same thing happened to my husband. Only had one week between thinking he may have a stone in his bile duct to him actually having a Whipple's for PC. Total shock!

Just wanted to say that the Cancer Research UK site has some really good info and advice on all aspects of this - eating, pain relief and,if you want to know, what the likely prognosis is for the diferent staging. Also try Cancer Backup, which I think (?) has merged with Macmillan to give good info, too.

I found reading it all upsetting at first, but it also helps you to understand everything and to know what to expect.

We've had a real roller-coaster since my husband's op, but so many people can't even have it because it's too late, so I am just grateful there was something the doctors could do.

My husband had his op on 28th July. He should have started chemo about 2-3 weeks ago, but has since had to have another operation, which has delayed him starting it. He goes to sign up for it next Monday.

Hope you find things settle down and you can get the info you need to help you.

Best wishes

Ellie

x

[gillvb1]

Hi Ellie, thank you for reading and responding to my messages. I am sorry to hear about your circumstances, you just don't know what's round the corner - I think it's the unknown that is so stressful after the initial diagnosis. You'll be aware that my Dad had his Whipples yesterday and he looks very well indeed but now we are faced with another unknown. The surgeon found a hard tumour which was isolated to the head of the pancreas, he was able to remove it all and proceed with the Whipples op but says that he is not so sure it is cancerous after all. The tumour will be tested and we will then know exactly what's going on. Thank you so much for your support and I do hope your situation improves. I like you find that preparing myself was upsetting at the outset but I would rather know exactly what to expect rather than hide my head in the sand. The only way is to try to stay positive, be thankful that our people are fit enough to be operated on and be supportive all the way. I will never write my Dad off and will remain supportive to him in the knowledge that I have my support network here on this website. Thinking of you and your husband and truly hoping that he is soon fit enough to undergo his therapy. Kindest Regards, Gill x

[gillvb1]

Hi, My Dad had his Whipple's op 8 days ago and is now at home. I thought he would be really poorly but I am very happy and surprised that he is able to get around (somewhat slowly) and is able to eat small portions of food. I am amazed that he can walk up the stairs and is looking fairly fit although he does appear to have lost some weight. We still haven't received the results from the biopsy but I understand that 40% of his pancreas was removed together with his lymph nodes. I visited my Dad in hospital when he was attached to feeding tubes and drains and it is quite unbelievable that he is home so quickly. He has colour in his cheeks and is optimistic about the future.

[Ellie]

Hi Gill

Wow, that was quick! Your dad out after 8 days and moving around and eating! My husband was in HDU for nearly a week, then on a ward for another 2. That sounds very promising if he's home so early! Hope he continues to make good progress.

Tell him to take it easy and good luck for the rest of his recovery.

Best wishes

Ellie

[gillvb1]

Thank you Ellie, and please do let me know how your husband's doing now. My Dad is in the pink but a little stooped because of the staples in his wound and the dressing around his torso. He tells me he is in very little pain and has continued to eat, albeit small portions. My Mum was cooking a mild chicken curry for him today! I feel happy that he is coping so well with his recovery from the Whipple's operation but also confused about the prognosis of the PC. Would the Consultant have told my Dad the prognosis of his condition? Kindest Regards, Gill

[Ellie]

Hi Gill

So glad to hear your dad is doing well! My husband was very stooped after his op, too. I'm trying to get him to stand up straighter now that he is fully healed, but think it's a protective thing after the wound feeling tender for so long. He found it difficult to lie down properly too, as it again stretched the wound, and his stomach is still a little tender when the quilt is ontop of it, but it's nothing as painful as it was at first.

As for prognosis, his surgeon didn't tell him anything. Last week, when my husband started his chemo, one of the doctors asked if he wanted to know "what his chances were". My husband said straight away that he didn't want to know. Uptil then, I wanted to know, but now, to be honest, I'm not sure. I've wanted to know as much as possible about everything else, but I'm scared to ask that one question. Immediately after the op, we were told the cancer had been caught early. No chemo was necessary. Then, we were told the biopsy showed several lymph nodes had cancer and he would need chemo "as belt & braces" treatment, meaning they'd do it just in case any bits had gone off elsewhere. That's when the doubt set in that it wasn't as positive as we first thought. I can't bear to think they might tell me he may only have a few years to live, even though the op was a success. I'm not usually one to bury my head in the sand, but I would rather we made the most of every day and enjoy what we can, without thinking the worst is ahead. If it happens, then I will have to re-think my feelings.....

My husband, after 3 months of constant hospital treatment and a further bowel op, is now looking and feeling nearly "normal" again. We're starting to do "normal" things, like go to the supermarket, or wander around the town. He went to see his specialist today, who said he looked well and seemed pleased with his progress but we got back home to find an appointment to have a full body bone scan next week. Why? No one has told us he was going to have one. No one has explained why he needs one, except when he was rushed in to hospital the other week with his pulmonary embolism, a doctor in A&E did ask when was the last time he had a full body scan. He made me think they were looking for secondary bone cancer, but after his PE was diagnosed, it wasn't mentioned again. I just wonder if they found something in blood tests that have made them order a scan. That has shaken me a bit, but I have to stay positive and just hope they are playing safe and doing the scan to rule things out.

I think if you want a prognosis, you have to ask. I would think the Oncologist is the best person to ask, rather than the surgeon. The surgeon operates, the oncologist works out what else is necessary, ie chemo, I think. There are some figures on the Cancer Research pages for PC, which don't make good reading, I'm afraid, but everyone is different and I am praying my husband will be one of the lucky ones who makes it. I don't even want to think of the other option......

Here's hoping your dad keeps on making that recovery!

Best wishes

Ellie

[gillvb1]

Hi Ellie

Thank you for sharing your experiences and feelings, I am in no doubt that we too may have a rocky road ahead. I am aware of the very small percentage who go on to live normal lives without the reoccurrence of a tumour. My Dad had his tumour removed and also his lymph nodes but it's been exactly 3 weeks since his operation and we still haven't received the results from the biopsy. My Dad has an appointment to see the Consultant on 7 November so perhaps that is the day of reckoning. Having said that, I don't know if my Dad would want to know 'how long' and now that I have read your email and thought more about the future why would anybody want to know.

I wondered what would happen if a tumour developed elsewhere and how would the doctors know and treat it early but then I guess that is why they perform a full body bone scan, I bet it is part of the routine post operative monitoring.

Like you I am hopeful that life will return to 'normal'. My Dad is doing extremely well now and has gone for short walks around the block and pottered around the garden. His appetite is improving all the time and he is enjoying his food. He looks well but gets tired and has lost weight.

It sounds as though you are taking each day as it comes and I think that is the only way to deal with this.

I will continue to post my Dad's progress on this site and hope that your husband goes from strength to strength.

Thinking of you both, Gill xx

[Ellie]

Hi Gill & Lorraine

How are you both doing? Just wanted to tell you that I found out that my husband had an ampullary cancer, which seems to have a better prognosis than a standard pancreatic cancer. Some good news at last! He has just had his 3rd chemo treatment and is doing really well - no problems at all. He's eating well, going out and has just driven for the first time in 3 months this week. We're waiting for the results of a bone scan done last week, but hope that will be ok.

I feel guilty giving you my good news, when you are both struggling to cope with your worries and problems, but wanted to let anyone else out there know that there IS hope of recovery from a whipple's and not everyone will have bad side effects from the chemo. I realise things can change, but for now, we are enjoying life again and, as always, taking one day at a time.

Thinking of you both.

Love

Ellie

xx

[lorraine]

Hi Ellie

Thats good news and iam really glad he's doing well.I wouldn't wish p/c on anyone.

Iam glad hes out and about and good luck for the scan results.

Dads had his second lot of chemo now which had to be reduced as it was too strong.Hes doing well and out and about just needs to put weight on as he has lost nearly 3 1/2 stone.As you we are just taking one day at a time.

Best wishes

Lorraine