Mum of 42 recently diagnosed inoperable PC

Hello all

This is a forum I never expected or wanted to be posting on as I am sure you will all understand. I have been reading the forum for the past few weeks and have found it very inspirational and supportive whilst feeling isolated and scared. I am a fit and active 42 yr old woman. I am a regular runner and have completed atleast 8 marathons, numerous half marathons and 10K's and a couple of ultra running events. I also enjoy swimming and cycling. I eat a healthy diet and don't smoke or drink.

I have two children aged 20 and 18 and a fabulous husband. They are all incredibly supportive and after the initial shock, devastation and fear we are all trying to remain as positive as we can. It is terrible when you read the statistics for this disease and I am avoiding looking at these anymore as am determined I will be my own statistic.

It all started around six weeks ago in October when I noticed my urine had turned a darker yellow. Initially I thought I was dehydrated as I had been for a run that morning. However it continued despite drinking copious amounts of water. I visited the G.P a couple of days later who was convinced I would have a urine infection and she looked surprised when it was clear. She advised a blood test which I had a few days later which indicated my bilirubin plus a couple of other liver tests were abnormally high. At this stage my stools had turned pale and after googling I had already diagnosed myself with pancreatic cancer!! Interestingly I have always had health anxiety about cancer and here I was being faced with possibly the worst type!

Looking back now I had experienced itching hands on and off for the previous few years which had been diagnosed as eczema as I do suffer with this on my hands, I had also been very tired the previous few months (but put this down to busy life), I had also noticed little red burst blood vessels on my chest which had appeared over the previous few months. However all these symptoms were non specific. I have beaten myself up about why didn't I go to the G.P and request a blood test earlier but I know that it useless and there were no symptoms to make a blood test warranted.

A few days after my abnormal liver tests I saw my G.P who referred me for an ultrasound and stated it would take a couple of weeks. By this point I was becoming jaudice and rather than wait I admitted myself to hospital via A+E a day later. I could not have waited a further two weeks for an ultra sound and I was turning more yellow by the day! That was on the 30th of October and I was in hospital for two weeks. It was the scariest time of my life. I have never been in hospital apart from having my children and I have never been seriously ill. Other patients on the ward were remarking how well I looked and wondering what was wrong with me and I was being investigated for such a serious illness. I knew the doctors and nurses were very concerned through their comments, that was very scary! I kept thinking I wish I had gallstones like the person in the next bed but I knew it was something more sinister as was painless jaundice.

The ultrasound confirmed I had a mass on the head of my pancreas. An abdominal CT scan followed and then I had a ERCP procedure to gain images and a biopsy whilst at the same time fitting a stent to relieve my jaundice. This procedure was successful and my jaundice was alleviated the next day which has been great as I was starting to feel unwell with diabetic symptoms. ***[Moderator note - Jaundice does not cause diabetic symptoms, so if you are still experiencing these, please let your care team know, as a person can become diabetic when they have pancreatic cancer - not everyone will, only some patients.] ***

This is such an emotional roller coaster as initially there was hope that they had caught it in time to be operable. I was told that following the scan a few weeks ago the tumor measured 1 cm x 1.9 cm. However after the ERCP it was found the thing has infiltrated by portal vein making surgery too high risk. I received a triple blow as was told by the GI Consultant that he thought they had all been too positive and optimistic and was time to get realistic! and that after discussion in the specialist MDT that the tumor has been deemed to be inoperable, they were unclear from the biospy what type of cancer it is and I may have to return for a further biospy and also had to let me know that some types of cancer don't respond to chemotherapy or treatment.

Myself and my husband left his room devastated. However, when we saw the specialist nurse a couple of days later she told me she had spoken to the specialist pancreatic cancer Consultant that morning and they had been able to identify the type from the biopsy and that although it has been deemed inoperable she would be astounded if I am not given treatment as I am a young fit woman. She was very positive in telling me that although we are not looking at a cure the team would want to do all they could for me to prolong my life and give me treatment.

This gave me some hope. I know I cannot name the centre of treatment I will be attending on Tuesday next week but I feel very lucky that it is a well respected specialist centre of excellence for the treatment of cancer. I have my first appointment with the Consultant on Tuesday where I have been told by the nurse that they will have all the information they need and will be able to give be diagnosis and possible treatment options. She said that once I am seen they wont mess about with getting started. I have to say that I have been feeling very anxious about the time I am waiting. However, I have been assured that everything is happening in the time scale it should be and that it won't make a difference to the outcome.

I have been told that on Tuesday they may have enough information to look at getting started with treatment (hopefully treatment can be given) or I may need to have a further test such as a PET scan. I know this will be to see if the cancer has spread and this is a great fear in the back of my mind. In many ways I just want to get on with any treatment they can give me. I am not sure how much information they will have got from the CT scan, biopsy and ERCP. I am guessing it will be type of cancer, staging, size but in terms of whether it has spread I don't think it will tell them that. So I am prepared for fact that I may have to have further tests and have another anxious wait. The doctor was able to tell me after the initial CT scan that it was contained but I don't think that they can tell if spread into lymph nodes without doing a PET or MRI scan.

A dye was injected into my vein when doing the abdominal CT scan but not sure what that would have shown.

It seems strange that at this moment in time I have been diagnosed with pancreatic cancer but until Tuesday I won't know what type, stage or possible treatment. I have good idea that it will be the ductal adenocarcinoma type due to the location of where it is. However will not know for sure until Tuesday.

Anyhow, sorry for the long first message. It has been an utterly dreadful month but I am determined to fight this disease. When I was lying in hospital I thought I would never come out and prayed that if I could just be given a few years I would be grateful, so at the moment I would settle for that rather than the grim 6-12 months statistic!

Since I have been discharged from hospital I have run 4-6 miles a few times, have cycled a few times, have made sure I have a juice in Nutri bullet each day and have been eating very healthy. It is very strange as I feel well and if I didn't know I would not have clue! At no point have I had back ache, stomach ache or sickness. This is such a terrible sinister illness!

I'm very sorry to read your story. My best wishes for a good response to treatment. You'll need some chemo first, but it would be worth enquiring about treatment with the Nanoknife. This appears to be as successful as chemo but isn't yet established as on the NHS. That said there are centres where trials are being done, and it's available privately for about £13K

Hi Ruthus,

Welcome to the forum, the place as you say no one wants to be but hopefully you will get lots of help and support.

What an awful shock it must have been to you all, the fact that you are well and healthy and positive will help with your treatment I am sure. Its not an easy road, but people have done really well like Mark (MSH who has already posted a reply). My husband had 5 great months last summer, when he felt really well in between treatments, so its certainly worth giving it a go. Just lets hope that Tuesday brings some better news and you can get started on treatment, at least then you will feel you are doing something Take care and keep posting,sandrax xx

Thanks for your replies and responses. It is very welcome in this new scary place! I have already researched the Nanoknife and my CT scan has been sent to London for the Consultant to view and see whether I would be eligible. I have been told that on Tuesday the Consultant will discuss this with me. I am aware that people normally have chemo before the Nanoknife is considered. We are very fortunate in that if this is possible we could self fund it. However, I am not getting my hopes up too much as don't want to feel too deflated if it isn't an option.

I would welcome any dietary or supplement advice. I am eating smaller meals and snacks but regularly. I am having one juice each day with around 10 different fruit/veg portions, a teaspoon of tumeric, chia and flakseed powder plus supergreen powder. I have no idea if that is of any benefit but is making me feel like I am trying to do something! I am also eating chocolate and food that I like as do not want to become obsessive and cut out things I like in life at this time!

I am not currently taking creon enzymes as seem to be doing ok with food and digestion. I have had to do a sample so my elastase levels can be reviewed to see if I do need Creon.

I have read somewhere in the threads that bitter melon capsules are recommended. Is this something others would recommend?

As well as a bit of Creon I have taken a multivitamin from the start, as fat soluble vitamins can be tricky to absorb. I have also taken bitter melon capsules twice a day since reading this article in Carcinogenesis.

http://carcin.oxfordjournals.org/content/early/2013/03/07/carcin.bgt081

I also now take simvastatin following positive reports emerging from the 2015 ASCO meeting.

http://meetinglibrary.asco.org/content/143458-156

http://meetinglibrary.asco.org/content/141440-159

Thank you for the links. I will definitely buy some bitter melon capsules on Monday.

There are also cases where chemo has shrunk the tumour enough to be operable. You can read these stories on the website. There is always hope! Let us know how you get on. Didge x

Thanks Didge. I have been reading so many stories and is reassuring to read that there are more positive stories and hope! I will let you know how I get on x

Hi Ruthus,

Welcome to the forums, although appreciate its not the place anyone wants to be, its good that you have felt able to post, and I am sure you will find this a very supportive community. My name is Jeni, and I am one of the nurses working for the charity.

I am very sorry to hear about your recent diagnosis of pancreatic cancer. Clearly, a huge shock to someone who is so fit.

There is a lot of information within the content of your post, and to address these I will email you directly Ruthus.

Hope that's OK?

Jeni, Support Team.

I have received my formal diagnosis today. We saw the Consultant Oncologist today who confirmed the tumour is locally advanced stage 3 adencarcinoma. He states it is small but due to position with the portal vein has been deemed inoperable. He said there is a small chance of it becoming operable. I had a second opinion with a surgeon yesterday who appeared to be a bit more positive about chemotherapy shrinking the tumour and it becoming operable. He mentioned portal vein reconstuction.

The plan agreed today is that I will have a hickmann line inserted next Thursday and will then commence chemotherapy which is Folfinox on Monday the 14th of December.

The intention is to complete 12 weeks of this chemotherapy every two weeks and then re-scan after this. He stated the specialist MDT would then review whether surgery would be possible, whether the chemo has been effective and this would also be a time to consider cyber knife, nano knife or radiotherapy before a further 12 week course of chemotherapy. He then said there would be a further review to what would happen after this and if the tumour was inoperable but had responded then trials or maintenance chemo would be considered.

I have been prescribed Creon today and will start taking this with meals. I feel physically well but I had an emotional crash after we got back from the hospital today. I felt very overwhelmed with it all but then realised that I have had a month of constant worry, anxiety and tension and today was a massive day.

Hi Ruthus

Being newly diagnosed with PC is terrifying and you will feel like you are on an emotional roller coaster. Trying to take in all the facts is a steep learning curve and at the same time you have to read so many heart breaking accounts of those who have sadly lost the fight in order to find more positive ones. I certainly found it completely over whelming at the start.

As well as dealing with your own feelings you will have the raw emotions of family and friends to deal with too but it does sound like you have good support around you.

The thing to hold onto is that there is hope and you are otherwise young and healthy. You also caught it earlier than most so that adds hope too.

Like me you are starting on Folfirinox on a 2 week cycle using a Hickman line. I am sure it feels scary to be about to start treatment but it sounds like you Centre is good and therefore I am sure you will get lots of support.

If I can help at all in terms of shared experience please feel free to get in touch, I will be following your story. This forum is a great facility with lots of caring and knowledgeable people and the support team are great.

Keep strong and take care

Marie x

Thanks Marie

It certainly has been a very tough month! A real roller coaster like you say. I will keep updating and reading on the forum. Thank you for your offer of support. I know everyone is different but I do have a few questions.

Did you lose your hair quickly after starting chemotherapy? I've been told I am likely to start losing my hair around 10 days after chemo starts. I am wondering if it will come out in clumps or just thin. I've got naturally curly shoulder length q thick hair. I've also read/been told that the first five days after chemo are the days where people feel unwell and can pick up during the second week. How have you tolerated the chemo so far?

I have been keeping active and ran/walked 12 miles over Edale today. It was lovely to be in the hills and fresh air.

I have also had a really nice surprise in hearing three of my best friends are coming over from New Zealand where they live to see me over the next week before I start treatment so we are going to plan lots of fun things to do.

Hi Ruthus I'm so sorry you've had to join us on here but welcome and hope you get some support and help through your pancreatic cancer journey. I hope the chemo can shrink it down for surgery, it has happened and can happen again!

If you need any specific help or advice just ask. good luck with your port fitting and your first chemo, everyone has a different reaction to chemo so I'm hoping you're a lucky one!

Rob

X

Thanks Rob

I am trying to live in the moment and not worry too much about what the future holds (very difficult) but there is a small chance it could become operable after chemo. It's just a glimmer but there is hope! Thank you for your offer of support, it's very much appreciated in this new scary place X

Hi Ruthus,

You are right, everyone's experience of chemo can be very different do I can only offer my own experience which may not reflect your own.

I am now on cycle 9 (today' sitting in chemo clinic as I write this), my hair didn't change much at all in the beginning, I think I was on cycle 4 before I began to notice extra hair in the shower, on my pillow and on the brush. It has just continued to thin and even now I haven't lost it all. It's very thin and I wear scarves when out as my head gets very cold, even indoors. I have 2 chemo buddies who also has PC and it's been the same for them so hopefully you too will be lucky on that front.

As for chemo, I tend to find that I am ok the first few days (I think that's down to the steroids...you get 10mg in clinic and then a 3 day course afterwards...I am usually pretty hyper lol) and even for a day or two after that and then I start to go down hill into the second week. Having said that some cycles I am pretty good, others I have found myself feeling unwell for long periods...mainly extremely fatigued and diarrhoea in my case. So it's hard to form a definite pattern.

However what I now understand, that I didn't before, is the chemo needs to be tailored to each individual so it takes a few treatments for your team to know how your particular body is responding in terms of side effects etc at which point they can start to change dosages etc.

I really would be happy for you to get in touch, I am on Facebook if you are on that. If you contact admin on here they will be able to provide my email address as we are not encouraged to swap openly on here. We can then take it from here. A PC buddy when you start out is a good idea.

Marie x

Thanks Marie

I have decided to have my hair chopped off so I can get used to it, so will be having this done tomorrow!

I have actually been contacted by the moderators and exchanged emails with another member which has been really valuable and helpful. I will email the moderators to arrange exchange of our emails as it would be nice to have contact and support.

Ruth x

Well I have had my Hickman line inserted today. The procedure was early at 8 a.m so we left at 6.45 to get to hospital in time. It all went well. I met up with some friends for lunch and then I had a consultation with the Consultant at 3.30. My bloods were fine and chemotherapy is due to start on Monday.

It's very strange as I've been feeling really upbeat and positive but after the consultation with the Consultant I felt very over whelmed and scared. He didn't tell me anything which I didn't already know and he was lovely but when I got home I was very tearful. I think this is completely normal as I am facing a very uncertain journey and have no idea how I will react to the chemo. It's also been a big day today having the line inserted. My neck is feeling bit sore now but nothing too bad! A good nights sleep will help. Tomorrow is a new day.

Hi Ruth,

I am sure that it all just became a bit too real, you know what is happening of course, but the actual fitting of the line, and then seeing the consultant brings it home that this is actually happening to you and its very scary. I know when my husband Trevor was going through all these different things and when the news wasn't too good we just needed time to come to terms with what was happening, then we would put our brave face back on and continue with the journey, with positivity and a smile its all we can do.

Sending a hug and strength to you, take care sandrax xx

Thanks Sandra

I do feel better today. I think a whole day in hospital constantly being around it was just a bit too much yesterday. Like you say you are really faced with the reality of it. Thanks for your warm and kind words.

Ruth xx

Just a quick update. I had my first cycle of Folfirinox on Monday. Unfortunately I hadn't been given an anti emetic tablet I was due to have an hour before the chemo and I vomited a number of times at the end of treatment. The anti sickness medication was sorted out and fortunately I've had no nausea or sickness since.

I have felt fatigued but nothing too drastic. I have been sleeping like a log at night, my energy is ok in the day and I've been eating well. The district nurse is due to come and flush through my line in the next hour and will be a relief to have the little tank removed from me! I am planning on getting out in the fresh air for a walk this afternoon.

My temperature has been fine so far. I feel a bit dazed and in a fog but think from what I've read this is normal with chemotherapy.

Hi Ruth,

This is all positive, apart from the anti-sickness at the start.

But sounds as though this was quickly sorted out, and you feel much better since.

A walk in the fresh air sounds good - and you will probably feel better for it, especially with the mild weather.

Great to hear that you are sleeping like a log!

Sometimes when folks stop the steroids post chemo, the dexamethasone which you get for 2 days, they might feel a bit less energetic, or maybe a bit queasy as well, sometimes sick. But its different for everyone - just to be aware of this.

Kind regards,

Jeni.

Hi Ruth,

Good to hear your treatment went well, apart from the sickness, don't be afraid next time to ask to make sure you get the anti sickness, they told us never be afraid to check things, with them.

The tiredness might kick in as Jeni says Trevor had his treatment on Monday, he didn't have the steroids after treatment 2 of the Folfirinox, as it upset hs blood sugars too much (he was type2) he was tired on a Friday/Saturday/Sunday, Sunday being the worst, as the treatment continued he would nap most of the day away but by Monday he was feeling back to normal.

I hope you continue to do well, take care sandrax

I hope all on the forum managed to have as peaceful a Christmas as possible. I last posted a few days after my first Folfirinox chemo. I did feel more tired on days 5-7 and just went with the flow having a nap or just resting on the sofa in the afternoon. However, I still enjoyed a 16 mile bike ride with my husband near Buxton. It was a blue skied crisp day and lovely to be out in fresh air.

I found I was feeling far more like my normal self last week (2nd week) which I know is common. I had more energy, didn't need to rest in the day and was generally able to go out and do things. I was probably a bit silly in going for a 4 mile run as this rubbed my PICC line. I decided cycling and walking is better. We managed another 16 mile bike ride last week along the canal and ended up in a strange cafe with many old sweets for sale that I haven't seen for a long time. Thankfully no infections or high temperatures so far but I almost feel I am jinxing this just typing it!

Xmas was different to say the least this year. We usually 'do' the Xmas day and for many years now it's been myself, husband, son, daughter and my 80 year old father in law and my 90 yr old father and 85 yr old mother. It is strange to think my parents had me in their mid/late 40's as was a second marriage and they brought me into the world older than I am now inflicted with this illness.

I was due to have my 2nd dose of the Fox on Monday 28th. At my review and blood test last Thursday my neutrophils were 0.5. The Consultant told me this wasn't surprising as the injections taken for 5 days following chemo usually take a few cycles to build neutrophils. He also explained trajectory of neutrophils dropping for ten days post chemo and that they usually significantly improve over the four days before the next chemo. Unfortunately they hadn't improved enough at 1.1. I was really disappointed as they rescheduled the chemo for the following Monday. We have booked to fly to our little escape in Spain that we have had for the past two years this Saturday for ten days and this obviously messed this up. My husband spoke to the nurse and explained the situation. Result being I had two days to get neutrophils to 1.5. I hit the veg juices, vitamin C, turmeric and black pepper shots. Result,.. Neutrophils were 2.9 today so chemo went ahead today.

I had all anti emetics and have had no sickness this time. I did have an additional injection today (and will have each time now) as I experienced stomach cramping when the iritocen was started. I have noticed neuropathy in my fingers since the chemo finished, my words are a bit difficult to get out towards the end of the infusions but this is triggered by hot/cold drinks and improves afterwards.

I am enjoying the fact that the steroids are boosting my appetite and giving me a boost. I think it's only right that we should take any boost we can and I don't care it's drug induced! I have had a few stomach cramps this past few hours but generally am ok.

Fingers crossed I will be disconnected from the 48 hr pump on Saturday morning and will be ok to fly on Saturday p.m.

It feels so strange that for the past two years I've been skipping to the airport with only a ruck sack and few clothes. I will now have, injections (which I'll have to wrap in ice packs), anti sickness meds, steroids, digital thermometer, standby antibiotics, vitamins, hot line number and the essential Creons!!

I cannot believe how my life has changed in the past two months. I have certainly had dark moments and although very hard rather then dwell on the awfulness of the whole situation I am really trying to embrace the simple joys in life, my amazing friends and family and the fact that it could be worse!! Ok, it could be a hell of a lot better but I'm still here experiencing/appreciating life like never before,...I am not wishing time away or being worried about trivial things. This illness puts all of that into perspective. Live for the day, there maybe no tomorrow!!

Sorry for very long ramble!! Ruth xx

Hi Ruth,

Its good to hear you are doing well, its strange how the treatment affects everyone so differently, Trevor had 23 lots of chemo and only had a problem with his neuts once, and he only had 3 injections just that once, good job as he hated them, said they made his thighs really hurt, he complained more about them than anything else.

I sincerely hope everything goes well and you get to Spain,and have a lovely break. Happy New Year to you all take care Sandrax

Have a wonderful time away Ruth, in the sun.

Jeni.