Metastatic adenocarcinoma

[channers]

Hi

I am new to this forum and would like to get some advice on my husband's illness.

Hi is 62 years old was diagnosed with secondary liver cancer in February. He had been gradually losing weight and had constant back ache. He is type 2 diabetic and we, and our GP, put this down to the diabetes. But in January my husband had he usual blood test, to check the level of blood sugars, and the results came back with an enzyme that should not have been there. The doctor said that this was indicative of liver disease and immediately asked how much alcohol he regularly drank, which was not a lot.

She sent him for an ultrasound and it came back with secondary liver cancer. We were both very shocked. They then did further tests and biopsies an a month ago he was told that he had metastatic adenocarcinoma of the pancreas with secondary cancer of liver, lung, abdominal nodes and adrenal glands.

We have been absolutely devastated by this news. But the oncologist told us that as my husband was still feeling well, apart from the back ache, he could start chemotherapy. He has now had two rounds of treatment of Folfirinox. This is very aggressive chemo and he has it over three days, one in the hospital and two at home with a small pump and canister fitted to him.

He has tolerated the treatment quite well, apart from being very tired and having some diarrhoea. The worst side effect was the amount of weight he lost after the first treatment, which was 4.5 kilos. He has put some weight back on, around 2 kilos.

I know that this treatment is palliative care. What I don't know is if the average of 6 months life expectancy is whilst he his having the treatment. If he has to stop because he continues to lose too much weight, or if he starts to have more side effects, will this mean that his life expectancy will be reduced.

These are some of the questions I can't ask at the hospital as I am with my husband at the time. I don't think that he wants to know but I need to know what we are facing. The thought of losing him breaks my heart and I need to know what to expect.

Channers

[sandraW]

Hi Channers,

Welcome to the forum, the place no one wants to be but where you will get lots of help and support. Its great that your husband is well enough to have treatment.

We have all been where you are now, worrying, needing to know what will happen, but everyone's journey with this vile disease is so very different, that no one can tell you that.

Folfirinox, although it is a hard regime, can give very good results, my husband sailed through his first 6 months, and saw considerable shrinkage of his tumours, had a 5 month break then when he had to go back on the treatment found it much harder, and more debilitating.

Our nurses on here are wonderful please give them a ring, and they will be able to give you lots of help and provide lots of advice too.

The 6 months is just the guideline laid down, every patient is different and how long they live and their response to treatment will be different too.

Please let u know how your husband is doing, and make the most of every day you have together, take care love sandrax

[Elaine123]

Hi Channers and welcome to the forum. I think Sandra has covered everything in her post. It is so true that everyone has a different journey throughout this horrid illness and respond different to treatment. I think because diagnosis usually comes so late in the progress of PC it is impossible to measure one persons journey against another person. You are in a great forum for enabling you to get information or answers to different issues that arise. PC is referred to as a rollercoaster by most forum members because of the ups and downs of symptoms which change so rapidly. The forum nurses are fantastic and they will be able to answer your questions and address your fears in a plain simple manner , please contact them if need be. I hope your hubby's chemo gets a little easier as time goes on and as Sandra said make every day count. Take care

Elaine

X

[Proud Wife]

Hello Channers

Welcome to you too.

Many a time I had a quiet word with the hospital staff when I wanted to find out information for myself. Perhaps the next time your husband is having treatment, you would wander off for some fresh air and express your concerns? The fear of the unknown can be terrifying and you too will also need support as you try to come to terms with the devastating diagnosis.

I don't know if it's me but I am quite surprised about the number of people in the early sixties who are being diagnosed and either find themselves or their partners on this forum. It could be because my hubby was at that age...

Anyhow, you will always get support here so keep posting.

Wishing you all the very best

PW xx

[Didge]

My partner asked what the expected lifespan was after starting folfirinox (it was a lot longer than 6 months) and he managed it almost to the day. However, it is just the average so there must be many people who do much better. He only managed a couple of months of folfirinox but it almost destroyed all the tumours so the longer you can keep going obviously the better if it is working for you.

[WifeampMum]

Hi Channers

I've found some evidence for you that's an improvement on the figure of 6 months life expectancy.

In a guideline published by the National Cancer Institute (the USA's national cancer research institute):

https://www.cancer.gov/types/pancreatic/hp/pancreatic-treatment-pdq

- a study of 342 patients with metastatic pancreatic adenocarcinoma is cited. Half were treated with Folfirinox and their median overall survival was 11.1 months. "Median" overall survival means that their chance of surviving BEYOND that time was 50 percent.

Over the last 2 years since I began researching PC, I have read about literally hundreds of PC patients who have far surpassed the expectations of their doctors in terms of survival and quality of life.

Your husband has youth on his side....younger patients tend to live significantly longer. Also, it's great that he has so far tolerated the chemo well. As his body gets used to it he may well find that he tolerates it even better... I do hope so.

W&M xx

[Veema]

Hi Channers...I think I've responded to your thread on the Macmillan site.

Folfirinox initially worked wonders for my husband and he tolerated it well, but there did come a point when it stopped working...he had 24 cycles in all...he was offered gemcitabine but it was too late, he was too poorly and died shortly after. So, if the folfirinox doesnt do for him, there are ither things they can try.

You clearly know this is a life limiting disease, so all you can do is make the most of the time you've got left together...I know that sounds harsh, but it's just the way it is. Make some more memories (I'm sure you've got loads already)...do some things you've always wanted to do and hopefully you'll have a good while yet...we got just under 2 years from diagnosis, but my husband did have the whipples op.

My husband didn't want to know how long, and neither did I really until towards the end and that was only for practical reasons such as giving up work to look after him...in the end he went a lot quicker and I do wish I'd finished work earlier, but hindsight is an amazing thing. You'll know when he's not long left...something changes, it's hard to describe.

Have you got palliative care on board? You are also entitled to PIP payments, which aren't means tested, so if you've not already applied for them, do it...we found out too late about this...a blue badge too.

Lots of love and strength...we know how tough it is, but you will be able to do it and come out the other side, I promise.

Vx

[Elaine123]

Hi Channers how long is something no one can tell. It is difficult dealing with PC as there seems to be no telling what symptoms each person will have and it is a day to day illness in that it can change so quickly but you will cope and the forum members and the nurses will see you through this journey if you need support. That sounds harsh and tends to minimise the caring role you have but as you go along you will learn all you need to know. Make every day count and as V said make memories. Make sure you also make time for you as that is important.

Take care and sending hugs

Elaine

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[raun cesar]

Welcome to the forum, our journey may not be same but always have something in common to share. Hope the chemo and treatment works for him. Take Care

[PCUK Nurse Chris]

Hi Channers,

Welcome to the forum. I think most of the previous posts have already covered the questions you raised but I thought I would also reply to you.

Each person diagnosed with this tough disease will have a different journey and their treatment and care will be individual to them. This makes it difficult to determine how long somebody has in regards to time and what their prognosis will be. I think it can sometimes be more helpful to set out what you and your husband want to achieve in your lives together and begin planning on reaching those goals and milestones.

I thought it might also help to introduce our support service. This is a free service that is available from 10am - 4pm, Monday - Friday (apart from Public holidays). It is run by a team of specialist nurses including myself. We all have experience in varying aspects of pancreatic cancer. There is no limit to the amount of times you can contact us, and we have no time limit to our calls, so are happy to spend time in discussions. We have different experience in looking after patients suffering from pancreatic cancer, and of course, their families and loved ones. Feel free to contact us via phone (freecall 0808 801 0707) or email (support@pancreaticcancer.org.uk)- whichever is more convenient to you.

Do ring or email us if you want to talk in greater depth about any of the issues you and your husband are facing.

Kindest regards

Chris

pancreatic cancer nurse specialist

Support services

Pancreatic Cancer UK

[channers]

Hi

I haven't posted for a while. My husband has had 5 cycles of Folforinox and because he was still in a lot of pain the doctors decided to carry out a CT scan early. They found that all the tumours have grown by 22%. They have started him on GemCap and he is starting his second cycle today. We are very disappointed that the first treatment hasn't worked. Did anyone else posting on here have the same sort of result and then start on GemCap? How did it work for you/your partner?

He has finally had pain relief that is working with 50mcg fentanyl patches and diclofenac. These seem to be working well.

We now have to wait for another couple of months before the next CT scan to see how things are going. All our fingers are crossed

Channers x

[Dandygal76]

Of course this breaks your heart, my dad was the same age. This is about you as well (and you really have to get that YOU part) and you are entitled to ask your own questions (go to your gp personally and get them to do it for you, put a letter into the hospital or another good route is the (usually cancer research) support group at your hospital. I would like to add to what has been said and what everyone thinks should happen (including PCUK).

There is not a right answer, even pcuk's suggestion of outlining of what you want to achieve. Some patients do not want to hear it. It all really depends on your husband and his outlook on this dreadful illness. If I was doing this again I would look more literal at the averages and work a social plan in an ideal world. Looking back, an early chemo break and a great holiday would have been wonderful but my dad would not have wanted a chemo break or do anything that would jeopardise his plan to last 3 years and see my son to uni. He actually promised my son he would do this.

Some people are 'lucky' and they 'breeze' a couple of years (this is a pancreatic cancer comparative, not that any of it is easy) and some people really suffer on chemo regimes.

There is not a right answer, only your answer and it is dependant on your husbands views of matters. Marmalade and others have a pragmatic view (the most realistic view) to plan that it is time for their loved ones. Mt dad needed to think he was going to live up to the last breath. And then there is always the remote chance your husband will be the one that conquers all.

It is so raw to be told terminal. I have a deep and longing pain now with the absence of my dad but that initial diagnosis of metastatic pancreatic cancer is indescribable from my experience. We are here and you will find your way through this, however hard that path is. x

[violetmia]

My husband is now 11 months from initial diagnosis at stage 2B. He had 6 cycles of FOLFIRINOX then whipples. Histology showed lymph nodes were diseased. Recurrence after only 3 months.. so back on FOLFOX (dropped irinotecan due to liver toxicity)

Hes tired, often in pain, but we are now holidaying in Greece with our 2 kids. I'm so glad we did this..

hes just about well enough to enjoy this holiday .. sitting in the sun watching the kids play.

Just trying to enjoy this time and not worry too much about what's ahead.

[violetmia]

We have just been told that Abraxane is not funded by the NHS if the patient has already had FOLFIRINOX.

Has anyone had Abraxane on the NHS after having had FOLFIRINOX first?

[Dandygal76]

Hi Violet. I am sorry if I missed a post but has Folfirinox stopped working?

I am not sure of your financial situation but I did look into buying a place in Wales (a 3 hour drive from here) for 3rd line treatment. Maybe not completely what PCUK will agree with but it is an option (and they will delete I am sure if they disagree).

I just weighed up the cost of private treatment against an investment.

DG

[violetmia]

DG, Thanks so much for your reply. Yes Folfirinox has stopped working. Also, the disease progressed on GEM-CAP as adjuvant chemo, so I'm not very optimistic about Gem alone.

Hmmm Wales is a radical idea, but I can see the logic. Thank you.

[violetmia]

Hello DG,

Sorry I thought I had replied, but my reply seems to have disappeared. Yes, Folfirinox has stopped working. Gem-Cap also didn't work. So Abraxane is the obvious choice.

Wales is quite radical idea! I do see the logic though, although its pretty far from where we live, and we have children in school.

Thanks so much for replying

[violetmia]

Hi DandyGal,

Very late response, sorry.

Yes the Folfox stopped working. Lesions had appeared in his liver, and scan showed more nodules in peritoneum. So he's now on Gemcitabine, but had to miss 2 weeks due to low white blood count.

We have applied directly to Celgene, who make Abraxane, to ask if they will supply it to him on compassionate grounds. I'll let you know how we do.

He's losing even more weight, but otherwise the symptoms are manageable.

Now we are about to go to Venice for a week!

x

[Didge]

Enjoy Venice! Fingers crossed for a problem free trip xx

[Dandygal76]

Hi Violet

How are things? I hope you are having a lovely time in Venice. We would love to be updated when you get a chance.

DG x