Newly diagnosed

[HelenC]

I'm a 51 year old woman, in pretty good health except that I was diagnosed with PC on 1st March. I've a single tumour which (when last scanned) hadn't spread. On 6th March the surgeons attempted a Whipples but were unable to get the tumour out due to location of key blood vessels; they bypassed my bile duct to stop the jaundice and sewed me back up. I'm now 5 weeks post op and still pretty uncomfortable with low energy levels.

I saw the oncologist yesterday and they're recommending I start Folfirinox in about 6 weeks. I'm also looking into Nanoknife.

I'd be grateful if anyone can share similar experiences. Especially:

- how long does it take to feel even vaguely ok after the operation I've had? Will I feel anything like normal again? I can't even lie on my side as it feels really odd and uncomfortable.

- has anyone had Nanoknife and how did they find it? Was it effective? At what point in the chemo did they have it?

- how do you cope with the knowledge that you're dying when you thought you'd 20-30 years left?

[Veebee]

Good morning Helen....sorry, but in our case the only similarities my husband has to your case is blood vessel involvement. Welcome to the forum and other members who have knowledge of whipple and nanoknife will be along soon to give you the advice you're looking for.

Vee xxx

[sandraW]

Hi Helen,

Welcome to the place no one wants to be, but hopefully where you will get lots of help and support. Please ring our wonderful nurses they will be able to give lots of help and information they are lovely, and very easy to talk to.

I think when you have had such major surgery it does take a lot of getting over and back to normal, in the grand scheme of things 5 weeks is a very short time. hopefully you will feel better soon.

It must be very scary but hopefully the "furry fox" will do its job and give you lots more time

people on here have done very well indeed on it.

Let us know how you are doing, take care love sandrax xx

[Guest]

Hi Helen, This is a very exclusive club that no one really wants to belong to but which for many is a sanctuary and to others and incredible support network. SandraW has given the best advice which is to speak to the nurses on here and of course to your own GP who is ultimately responsible for your care. It must have been a blow to prepare yourself for such a big operation and then not get the outcome you wanted, on top of which you have the added misery of having to recover from what is indeed major surgery. My daughter is a hospital doctor and takes part in Whipples procedures, they are very long and complex operations. You may feel generally well but you have a serious condition and it is bound to affect recovery. It is also very common to be a little depressed after any major surgery and, as a result of this diagnosis.

You have youth (I know, seems such an odd thing to say but hugely important to outcomes) on your side and generally good health, so your doctors are going to be doing everything they can to give you the best chances of success. There is more and more focus on new treatments and research and you are ideally placed to take advantage of breakthrough treatments and trials. Your medical team are there to help you and you should be able to speak to your named specialist nurse at the hospital, or your GP or the nurses on here if you are at all concerned or would like help, encouragement or information. learning to ask is the first hurdle...

If you don't already have it, get a prescription for creon (digestive enzyme not a drug) and make sure you always have plenty, doctors often under prescribe so check doses with the nurses on here. A word of warning! Some hospitals take the creon off you when you are in hospital and fail to understand that you must have it WITH meals and snacks not before or after for it to be effective. Always keep some in your wash bag in case and don't give it up. It may not be an issue now but could well become one.

On another subject, if you have not already done so, get your hospital specialist nurse or GP to do a form DS1500 and send it off to MacMillan Finance who will progress a claim for you, this form entitles you to the maximum attendance allowance or equivalent benefit for those below retirement age from the date of your diagnosis, its well worth having. I realise that you may not feel you need this money but you are entitled to it as a consequence of your diagnosis. Don't be put off by the terms used or that it may run out more than once, the hospital will deal with that. This money can be of huge help to you and your family to help with loss of earnings or to be stored up in case you incur extra expenses or need assistance at some point.

I will also mention palliative care - before you shout in horror, hospices and palliative care teams have a much bigger role than end of life care (at which they are the experts). They run courses for both patients and carers to learn how to cope and care for people with very serious conditions including chemo side effects, pain, diet, exercise, finances, emotional issues and so on. They have some great facilities (massage, relaxation treatments etc) social and information groups. The courses are great confidence builders for patients and carers, knowing what to expect takes away fear. Staff have a wealth of experience in managing symptoms and providing a safe environment for people to discuss their concerns in confidence. Many people don't like to worry their family or admit their fears. Staff are ace at knowing exactly what to do and say. You don't have to continue the relationship any longer than you want but the courses are well worth the effort and your GP should be able to refer you.

I hope you find what you are looking for on the forum and will feel welcome here. I hope you will continue to share your experience with us.

Marmalade x

[HelenC]

Thanks everyone for the advice. I'm still just feeling like it's a horrible nightmare that I'm bound to wake up from. Can't believe how much my life has changed in 2 months.

[Proud Wife]

Hello Helen and welcome.

This forum has been unusually quiet for the past week and I'm really sorry for that. However, you will always have the most wonderful support here, both from our forum family members and our brilliant nurses.

Marmalade is spot on and I can only really echo her very wise words.

I don't know if you live alone or with family? Please don't feel as though you have to share personal details with us but I'm just hoping that you have someone by your side helping you try to come to terms with this shocking and devastating diagnosis.

Although I watched my husband go through this and on to the other side of the divide and had to cope with the knowledge that this was a life limiting illness, it's totally different when you are the patient, rather than the carer so I am not going to pretend I understand how you are feeling. It's horrendous beyond words.

I'd like you to know there will always be someone here that should be able to provide you with whatever information, support of questions you may have or need. It really does make a difference being in contact with people who understand.

If you ever want to make contact with someone off forum in order to have a more personal conversation, you only have to email admin and ask for your details to be passed onto that person. I did that and have made what I hope to be some lifelong friends.

But first and foremost, after the Easter holidays, I would suggest your give our wonderful nurses a call and chat through your feelings. Each and everyone of them are MARVELLOUS and I'd have been lost without them!

Lots of loves

PW xx

[stepuha]

Dear Helen,

Welcome to the forum. I hope you get the answers you are looking for.

I was diagnosed with metastatic PC in October last year and have been doing chemo since.

It is good that your cancer has not spread. Folfirinox has been known to shrink the tumour away from the blood vessels to make the Whipples possible. Every patient reacts to the chemo differently, so there are no guarantees but Folfirinox is a standard of care for stronger and younger patients, it is considered to be a stronger chemo, so the fact that you are being offered it is a good sign.

I can't comment on the operation after effects as I didn't have one. I felt I couldn't lie on my side after the stent had been placed. This settled down after a few weeks and I started feeling normal.

I am also considering Nanoknife but I am unable to do it at the moment because I take part in the clinical trial.

Professor in London recommends having chemo at the same time as Nanoknife. He didn't specify the preferred timing for Nanoknife but Nanoknife can only be done on tumours of a certain size (under 4cm, I believe). If your tumour grows bigger, this option may not be available. I believe, the American Professor Nano recommended 5-6 months of chemo prior to Nanoknife but of course there is always a risk that chemo will not work and the tumour will grow. Prof in London says that Nanoknife will not provide you with a cure but it will extend overall survival. According to the statistics included in his letter, for locally advanced patients, the median overall survival after Nanoknife is 27 months. However, I believe this is taken from the US study which is based on Nanoknife operation (not laparoscopically done Nanoknife). Whipples provides the only possible cure for the moment.

I would recommend to do a biopsy and genetic profiling of your tumour. The Precision Panc program that has been launched recently in the UK is looking to individualise treatments depending on the profile of the tumour. You should be able to find details online easily.

Please also consider clinical trials at this stage. You can find available clinical trials on the website of PC UK. Some of the trials are only available for those who have not been treated previously, so once you start Folfirinox, you will no longer be eligible. One thing to note is that once you join a clinical trial, you will not be able to do other treatments in parallel (i.e. Nanoknife).

I am 36 years old, before I was diagnosed I was in good health, so the diagnosis came as a shock. I am approaching the 6 months anniversary of my diagnosis and according to statistics this was pretty much all I could hope for. Six months into treatment, besides chemo side effects, I feel like there is nothing wrong with me. No one can tell us how much time we have left. Your PC path will be individual to you. There is so much research happening at the moment, there are new clinical trials being registered all the time. Who knows what will happen in a year's time. New treatment options will come out and maybe a cure will be found. All we can do is try and enjoy every good moment and take any treatment options available to extend our life until the cure is found. Treatment options are very limited, so you need to be very careful about decisions relating to treatments. You don't want to lose out on any opportunities.

For the first few months after the diagnosis I kept bursting into tears at any mentioning of cancer or plans for the future. Eventually this passed. I don't know why or how. I just accepted the new 'normal'. If it really becomes an issue, I read about other patients taking anti-depressants and how much they helped them. This could be an option you may wish to consider.

I hope you recover from your operation soon and your treatment goes ahead as planned.

Sending you strength and positive energy,

stepuha

[WifeampMum]

Hi Helen

I'm really sorry that you have cause to be here and I'm not surprised that it feels like a nightmare, it's a very tough diagnosis to get your head around and you were dealt a hard blow when the Whipple failed. The same happened to my darling hubby 2 years ago. I have written a little about his situation in my thread here

"Thoughts from the PC frontline"

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=4&t=1798

If your diagnosis is "borderline resectable" (as my husband's was) the folfirinox may get you to a point where the surgeons can have another try at the Whipple. Unfortunately arterial involvement is far more challenging than venous involvement and this type of surgery is rarely attempted. Even when veins are involved some surgeons are reluctant to operate. Sometimes it pays to shop around (i.e. seek a second opinion) to find a surgeon who will take you on.

The 11 week gap between having your op and starting chemo seems quite long. In my husband's case the gap was 6 weeks and it would have been shorter but for his raised bilirubin level. It might be worth querying this with your oncologist.

Wishing you strength and good luck as you deal with everything ahead

W&M xx

[Veema]

My husband's tumour was pressing up against blood vessels and Folfirinox shrunk it away to enable him to have the whipples...good luck with chemo.

Vx

[Didge]

Hi Helen. Just a word of encouragement- you may not die! If the chemo works and you are able to have the Whipples you may enter the happy statistics! Try looking on the real life stories for encouragement. Also worth mentioning is that most people who use the forum do not have a good prognosis and that is why they use the forum so much. But every once in a while someone will post something like "I am still here and it's been 5 years" etc. Those who do well tend to go off and live their lives and put it behind them - and who could blame them?! As for the post op problems, everyone is different but it is still very early days xx