My Journey So Far

[MSH]

This is my first post on this forum, so a little background by way of introduction. I am a 59 year old GP and was winding down to, (at least in my opinion), a well earned retirement. My wife and I left for a skiing holiday in Canada on 4th February and as far as I was concerned all was well. Whilst away I quickly began to have symptoms of mild diarrhoea, dark urine, passed off initially as exercise related and 8 days into the holiday I began to look yellow. I made arrangements to return to the UK.

We all tend to think the worst and painless jaundice has an ominous reputation, I suspected pancreatic carcinoma from the start, though my surgeon initially thought gall stones more likely. An ultrasound scan was followed by a CT scan which confirmed a pancreatic mass. Then followed an EUS and an ERCP to get a tissue diagnosis and to fit a biliary stent to relieve the jaundice. Both of these required repeating because of an indeterminate result and "sludge" blocking the stent.

My diagnosis is adenocarcinoma of the pancreas which is stage 4 and inoperable because of involvement of the superior mesenteric artery and vein. I also have chronic pancreatitis which I find hard to believe as I had absolutely no symptoms. I had a central line (Groshong Catheter) fitted on the 17th April, and started my first cycle of Folfirinox on 22nd April, when my liver function was back to normal but my CA19-9 was 1060.

So much for the bare bones, subjectively the last 3 months has been a real emotional roller coaster. It is difficult to accept such a serious diagnosis, especially as I felt perfectly well apart from the damned itch which made sleep so difficult. Fortunately the jaundice has now cleared completely, which is just as well as it would have prevented chemotherapy. I have developed a pain which is now mostly in the back, and tends to wake me in the early morning. This is controllable with paracetamol which I take 2 or 3 times a day along with Creon 40,000 units with each meal and a multivitamin mainly for the vitamins A,D and K. I am enjoying my food and have regained the small initial weight loss. I sleep well and try and walk for at least an hour each day.

I had some qualms about the central line, it does shake up your body image when a small tube leaves the centre of your chest, but I barely notice it now. Of course I can never forget about it if only because of the potential dangers of infection. The most noticeable affect from the Folfirinox was some temporary difficulty with speech (dysarthria) and a few hiccups when the bottle was attached. The main danger will be the effect on the blood cells (red, white and platelets), and I will find out about this next Tuesday before my second cycle.

This has been a long post and represents my experience to date. I intend to add to this over the coming weeks and months. Whilst I am happy to clarify or answer questions I would request that people keep the thread relatively uncluttered to maintain the narrative.

My very best wishes to all.

Mark

[J_T]

Hi Mark, do I understand you are using this thread as a kind of diary? I will keep this short then.

Similar to my 61 year old husband. Started with symptoms of indigestion, followed by jaundice & itching, followed by 2 metal stents, followed by 1 cycle to date of Folfirinox. Ray has had no back pain, rather a band at the front and upper abdomen. This has disappeared since chemotherapy. He's been very fatigued and not had much of an appetite and passed on this week's chemo. Hopefully second cycle will go ahead next week.

The diversity in reactions to side effects, appetite and fitness is remarkable to me.

Best regards

Julia

PS Sue B is the wife of a fellow pc GP (I think!)

[Sueba]

Hi Mark

Just wanted to say hello and like Julia I won't clutter your thread,my husband (42 year old and also Gp)same kind of thing,no symptoms until urine changed colour and suspected gallstones,click on my name to read our journey so far... Best wishes for your treatment,

Sue

[MSH]

Well my fears on the effects on the blood cells were well founded. I had been feeling well going into the Mayday bank holiday and had just come back from a good walk when I began to feel more tired and when I checked my temperature it was above 38. I had visions of spending the weekend in hospital but fortunately the feeling and fever subsided over an hour or so. I rang the helpline and we agreed to monitor things with a low threshold for A&E referral. The Saturday and Sunday passed with me feeling really well until the Sunday evening when I had a recurrance of fever this time lasting for about 4 hours. A trip to A&E found my neutrophils to be 1.5 which didn't seem too bad, and I was allowed home after a bit of persuasion, (the temperature by then having settled) on Ciprofloxacin and Co-Amoxiclav. The doctor thought the likliest source to be the stent, and some mild twinges from that area the next day made me think she was right. I had a lovely walk along the Northumbria coast for 9 miles on the bank holiday Monday and was more than a little surprised and disappointed the next day when my Folfirinox was deferred bacause my neutrophils had fallen to 0.5.

I had a meeting with the specialist nurse later that week, and had some good news in that my pre-chemo CT scan had again shown no mets, and also the CA19-9 had come down to 978. The following Monday my neutrophils had improved to 2.1, but I was disappointed that the dose of the Folfirinox had been reduced by 25%. The side effects were similar but much milder, making me worry that the effects on the tumour would be correspondingly reduced. I e-mailed my oncologist arguing that the drop in neutrophils was likely to be an effect of the infection, but I dont think she sees it that way. She did mention GCSF as a possibility that we'll discuss when I see her later this week.

This bank holiday weekend has been much better. I had got used to taking Paracetamol three times a day when on the Co-Amoxiclav and have continued but to be honest the pain has virtually disappeared. I was waking early each morning with back pain but now only have an odd twinge from my tummy. Furthermore the CA 19-9 has come down to 921. This all argues that the chemotherapy is working. The initial trial of Folfirinox was reported as recently as 2011, and was in patients with metastatic disease. There are reports that Folfirinox when used in locally advanced but inoperable disease can in more than 20% of cases make an operation feasable. This is a long way from cure but it does give one hope.

I continue on Creon and have added bitter melon capsules to my regimen following good reports of their effect in pancreatic cancer. I consider myself very fortunate in some ways. When I wake on a morning I dont feel any different to how I felt before this all started, and much better than the time with jaundice or pain. My appetite remains good and I am trying to shed a couple of kilos. Energy is good aside from a little more fatigue around the chemo week. I hope to get to France next week where we have a house in Languedoc and the fortnight after I've booked 5 days in Berlin, a city I've wanted to visit for some time. It might be a bit rash, but I figure if you worried about everything that might happen you wouldn't do anything.

[J_T]

Your Northumbrian walk and Languedoc retreat sound like bliss. Its great that you have the energy for a 9 mile walk too! Berlin? not my cup of tea but each to their own

Ray has also had his Folfirinox reduced by 25%. Seems like any reaction to infusion and they alter it, not that he's complaining. We were though, similarly wondering about a reduced efficacy as a result but the onc's arguments seemed reasonable ie in simple terms, getting the dose right for the individual.

Ray has not yet sampled the delights of Bitter Melon Juice, I may have to get the tablets after all!

Enjoy your holidays!

[LindaH]

Interesting to read your posts Mark and I will follow your progress with acumen.

I am also 59 years-old and I was found to have Pancreatic Cancer in December 2012 a 6cm tumour. Unfortunately, I feel due to having to wait until March before I could begin Chemo; Gemcitabine and Cisplatin is the reason why my tumour has spread into my liver, therefore making it inoperable.

The problem with my tumour, it is a rare form of tumour not usually found in the Pancreas, mine is Squamous Cell Carcinoma hence all the waiting time with the hospital having to keep staining the tumour sample to indicate it's type, the hospital were certain it had evolved from breast cancer (secondary) I had in 2007, I knew it hadn't because my BC was DCIS, of course, they wouldn't take my word.....so more waiting. The tumour has come into my Pancreas as a primary.

I am doing quite well on my Chemo treatment and tolerating it, thank goodness, though at this moment in time I await my last CT scan results to tell what position the tumour is in at the moment and if the Chemo is working.

I am also - like you, trialing bitter melon, but in juice form for me, though I might change to capsules as taking the medicine needs much more than a spoon full of sugar to make it go down for me. I have had to stop the Creon as I find it was giving me an upset tummy.

Again like you, the pain in my back has virtually disappeared which I cannot help feeling is a good sign, so I have now reduced my Morphine down to a minimum, just taken at bedtime.

I sincerely hope you continue to improve and I hope an operation is in the future for you. Enjoy your trip to Berlin like you say if you worry about what 'could' happen, you would just sit and vegetate something I certainly do not intend to do.

Sincerely

Linda

[dabber66]

Hi Linda, just thought I would add to your post, regarding Creons. Could be totally unrelated, but I was struggling with Creons, the biggest problem was severe bloating - I have a brilliant GP and Dietician at the hospital, tried Creons out of the capsule, but not really recommended, however, my GP changed me to Nutrizym 22 - what a difference! bloating gone, and I feel much better, worth a try if you really need the pancreatic enzymes. Carole.

[LindaH]

dabber66 wrote :

> Hi Linda, just thought I would add to your post, regarding Creons. Could

> be totally unrelated, but I was struggling with Creons, the biggest

> problem was severe bloating - I have a brilliant GP and Dietician at the

> hospital, tried Creons out of the capsule, but not really recommended,

> however, my GP changed me to Nutrizym 22 - what a difference! bloating

> gone, and I feel much better, worth a try if you really need the pancreatic

> enzymes. Carole.

Oh that's wonderful Carole, thank you. I am struggling at the moment on Creon, they give me a terribly windy tummy, but I found to my cost, if I don't take them I am now struggling with awful diarrhoea, it's a catch 22 situation. I will ask about Nutrizym 22 thank you for the information.

Linda x

[LindaH]

dabber66 wrote :

> Hi Linda, just thought I would add to your post, regarding Creons. Could

> be totally unrelated, but I was struggling with Creons, the biggest

> problem was severe bloating - I have a brilliant GP and Dietician at the

> hospital, tried Creons out of the capsule, but not really recommended,

> however, my GP changed me to Nutrizym 22 - what a difference! bloating

> gone, and I feel much better, worth a try if you really need the pancreatic

> enzymes. Carole.

Carole, I've been given Nutrizym 22 by my GP and she is saying to take one or two with meals & one with a snack, is that the dose you have been recommended?

[MSH]

Today marks the last day of my career, though in truth I haven't worked since 1st February. For almost 30 years I have been a single-handed GP in a village somewhat in the manner of Dr. Findlay. This meant that when we did have a holiday we had to leave the house, partly because of all the phone calls coming through at all hours of day or night, and partly because the locum would need to stay in the house. This and a problem with the car when holidaying in France led to us buying a place there. Life is quite different without the internet or telephone and little television, we spend our time reading, listening to music and country walks. It takes a day or two to wind down but it leads to a very relaxing holiday. At one time I thought I would never see the place again, but being there has made me more determined to return, we shall see. We have done well for holidays with a 6 day trip to Berlin following a fortnight later. This was a very different type of holiday but I was pleasantly surprised at being able to manage up to 8 hours tramping the streets or galleries. Berlin is vibrant with the feeling of being cutting edge. The highlight was probably the Gemäldegalerie, though Potsdam gets an honourable mention.

The trip to Berlin didn't start too well. Every few weeks I have a problem with wind. This starts with a characteristic eggy taste shortly after I get up and then goes on to cause abdominal bloating. I had an episode of this on the day we travelled and abdominal bloating and air travel don't mix well. Fortunately the episode was true to type and was gone the next morning. I suspect some imbalance in the gut flora, I can get bloated if I have a fatty meal but these episodes don't seem food related.

Travelling back from France we listened to Pick of the Week on radio 4 and heard Wilko Johnson talking about his reaction on being diagnosed with pancreatic cancer. To an extent I can identify with what he says. I wouldn't go as far as elation but I have generally been in a good mood and agree with his description of living in the moment.

I have now completed 5 cycles of Folfirinox, and the side effects seem to have settled to a pattern. For a few hours after the infusions I have difficulty co-ordinating the muscles around my jaw. This makes speech and eating difficult. Anything cold causes a tingling in the throat and hands for a few days, but this tends to settle after a week or so. I also have a taste I think from the Oxaliplatin which is unpleasant but tends to diminish in the second week. I tend to write the chemotherapy week off as just one to get through, whilst looking forward to the second week when I generally feel well especially towards the end of the week. It is helpful that there are signs that the chemotherapy is working. My biomarker CA19-9 has fallen to 342, and I haven't needed a pain-killer for weeks. Indeed I was confident enough to travel to Germany without them. I have also dropped my midday Creon, and will ask for a reduced strength when I next order. My appetite is no problem despite the taste, and ideally I should lose a few kilos. I have for the last 3 cycles had 6 mgs Neulasta a day after the chemotherapy. This has kept my neutrophils high, and reduced my risk of infection. This appears to be particularly important in those like myself who have a biliary stent.

I am scheduled to have the 6th cycle starting 8th July and Have a CT scan booked for the 15th, with an appointment with my oncologist 3 days later. This will be a critical meeting. My last scan showed the tumour to be 4cm x 3cm x 2.5 cms and highly suspicious of arterial encasement around the superior mesenteric artery. I can only hope that the tumour has shrunk enough to allow at least the consideration of surgery.

Que Sera, Sera.

[J_T]

Hi Mark, I've been wondering how you are doing, great by the sounds of it! Glad you enjoyed your holidays. You certainly seemed to have retained your stamina!

Ray is also due cycle 6, a week on Wednesday and his side effects are now minimal, but as you know, his doses have been reduced. We also, too, have a scan imminent, CA19 levels have never been imparted so we have no idea what's happening 'down there'.

I have a couple of questions. Why are you reducing Creon? I would have thought if you need it, you need it? Also do you know anything about Folfirinox doses? I'm intrigued that all the regions seem to have the same regimen but Ray's doses are higher, although they've been reduced, if that makes sense! The doses are /m2 which I believe relates to body mass/area, so are those doses a starting point and then calculated according to the person ie, everyone starts on a different dose? Just curious!

[MSH]

Hello Julia, I'm glad to hear that Ray's doing OK. As far as the Creon goes, I'm not sure I need it. It was started along with Cholestyramine when the itching was at its worst. I soon had to stop the Cholestyramine because of diarrhoea and haven't noticed any effect from reducing the Creon. To some extent I think it's trial and error.

The Folfirinox doses as you say are calculated per square metre. The initial study used

FOLFIRINOX consisted of oxaliplatin at a dose of 85 mg per square meter, given as a 2-hour intravenous infusion, immediately followed by leucovorin at a dose of 400 mg per square meter, given as a 2-hour intravenous infusion, with the addition, after 30 minutes, of irinotecan at a dose of 180 mg per square meter, given as a 90-minute intravenous infusion through a Y-connector. This treatment was immediately followed by fluorouracil at a dose of 400 mg per square meter, administered by intravenous bolus, followed by a continuous intravenous infusion of 2400 mg per square meter over a 46-hour period every 2 weeks.

http://www.nejm.org/doi/full/10.1056/NEJMoa1011923#t=articleTop

Most of the protocols are based on this, though leucovorin can differ, my hospital uses a total dose of 300 mgs for this. It is a tough regime. I registered with the Oncologist to read the details of the Massachusetts study and was interested to see that only one patient from 22 managed all 8 cycles with no dose reduction.

http://www.ncbi.nlm.nih.gov/pubmed/23657686

[dabber66]

Sorry Linda, only just seen your posting regarding Nutrizym 22. Your doctor is just about right. It will be trial and error for a while, I take one with breakfast/sometimes two( eggs, or small amount bacon, or beans on toast, that sort of thing / two with lunch - that is our main meal, I always take one with water, at the beginning of the meal and the other half way through the meal, and if I have a cake or something, then I take one more - it took me ages to remember to take them, certainly if we ate out - I have bought myself a beautiful pill box, it is perfect - silver and enamel, just the right size (ebay!!) and it is a joy to take it out of my pocket to take my pills!! well, have to get some pleasure out of taking them! Think you will soon know when to take them - you shouldn't need them with snacks like fruit, cup of tea, so long as you do not put too much milk in - we only drink soya milk, and have cocoa at night, made with all soya milk, but I have stopped taking a nutrizym with that. Hope the above helps, and I do not mind if Jenni passes my e mail address on to you. take care, Carole

[J_T]

Thanks for the info Mark.

I forgot to mention your big day today, last official working day! Not sure if congratulations are in order, must be with mixed emotions but a momentous time when you finally retire. Ray had the opportunity, and was looking forward to, retiring in his mid fifties, when the time came though he found he wasn't ready and moved into a new career, finally retiring early last year. Pity we didn't have a crystal ball!

Good luck with your next session.

Julia

[MSH]

This disease has a habit of giving me a bit of hope and then coming back to frustrate it. I was told it was very unlikely to be pancreatic cancer because if it was I wouldn't be going skiing, and gall stones were far more probable. Then before the stent was fitted it was explained that I was heading for a Whipples and how much safer that was these days, only to be told not 4 hours later that it was in fact inoperable. I had some hope after reports of Folfirinox rendering over 20% of locally advanced cases operable. I was obviously responding well, the pain had gone soon after starting chemo and my CA19-9 had dropped to 305. I was anxious to learn if my mid-treatment CT scan showed that the tumour had shrunk sufficiently to consider surgery. Well the tumour had shrunk sure enough, but the scan also showed five areas of bony metastases. Apparently these hadn't been visable on the initial scans but became so as they responded to chemotherapy. Not the best of days, but still better than the early stages of this disease when there didn't seem any hope at all. The current plan is to continue with the original plan and have twelve cycles of Folfirinox then a CT scan and if there has been a good response a PET scan. There is still hope if somewhat less than before.

I have just had my seventh treatment or mostly so as I still have the infusion bottle for the next 44 hours. The side effects run true to a pattern and apart from an inability to eat ice cream for most of the fortnight, and some tingling in my fingers if I do anything or touch something cold are pretty negligible. The exception is fatigue which does seem to be getting worse. I now move quite a bit slower, the spring having been lost from my step. I also get exhausted after an hour or two's gardening. The best days are the two or three before my treatment, though I can't blame it all on that as I'm also anaemic and was a bit low in potassium last time.

I will find out on Thursday if this is still a problem. I wonder if it is down to my tummy which is upset from time to time. I am still experimenting to find the best dose of Creon. It isn't that easy as I suspect diet comes into the equation though I've currently setttled on 40,000 morning and night and 25,000 midday. It helps that my diet is heavily based on fish and fruit. My appetite remains good, I don't take the offered Ondansetron as nausea isn't a problem, though something a bit similar comes with the taste from the Oxaliplatin, which can last a few days. I have managed to lose a few kilos to reach my target weight. The possibility of diabetes being at the back of my mind. I always ask the nurses to run the glucose drip slowly.

At the moment I'm quite content with things. I get up on a morning and still give thanks that I don't have to go to work. I have no symptoms other than the transitory chemotherapy effects. I live pretty much from day to day though thoughts are straying to France in September. I'm also looking forward to the 6 weeks off chemo that I'll need before a PET scan. It's best to remain positive.

[J_T]

Hi Mark, pleased to hear about the tumour shrinkage but not so good about the bone metastases. It seems your results were somewhat similar to Ray's, he also showed bone mestastases that were not present initially, however our onc decided to stop the Folfirinox straight away. He also had no pain, more or less straight away after first chemotherapy and was, and is, quite well and we were shocked with the scan results.

Although our onc is not specialist in pc, he is the top man in our area so we have to trust him. We are starting new treatment on Thursday but won't know until tomorrow whether we will get what we want - I will report back as soon as I know for sure.

Ray has always found the fatigue the worst aspect of the treatment and you are still doing well if you can manage a couple of hours of gardening! I was doing some last week and *I* was pooped after a couple of hours out there, especially in the heat we have been experiencing!

It certainly is a journey of highs and lows but you are right it saying the only thing to do is remain positive. France sounds wonderful, such a beautiful country, and something good to look forward too.

Keep well.

Julia x

[Cathy]

Hi Mark

You sound like you are doing really well.

Jonathan also found the fatigue worsening arounds the same cycle as you are on and the break he is currently on is doing him the world of good. He looks great (albeit a little bit too much girth!)

I'm not surprised you are thinking of France, it won't be long now to September.

Keep on keeping on!!

Cathy xx

[Bee]

Hi Mark,

This is a disease of such highs and lows, it seems impossible to second guess what is going on in the inside of each individual.

As you say day to day living becomes the norm and being thankful for what you have, amazing how priorities change on this journey.

France does indeed sound lovely as does the well earned break from chemo!

Take care,

Bee xx

[J_T]

Hi Mark

Been wondering how you are doing? Have you finished your cycles of Folfirinox?

Hoping you are well.

Julia

[MSH]

Quite an eventful month, I went for my 9th course of Folfirinox which went as per usual. Unfortunately when I returned to have the bottle disconnected I found the CA19-9 had jumped to 800+ almost 3 times what it had been. This led to me having a further CT scan which apparently was much the same. I had a meeting with my oncologist yesterday and a further CA 19-9 had dropped to 370. This was good news as I had worried that my tumour was becoming resistent to Folfirinox. The plan now is to complete the final 3 courses of chemo and then have a further CT scan and then perhaps a PET scan which should reveal if there is any activity in the bony mets.

I had booked a holiday in France next weeek and so will have a gap of 4 weeks before the next course of chemo. I am not unhappy about this as it should allow me to enjoy the holiday a bit more. My haemoglobin had dropped to 10.3 making exercise a bit more difficult, in fact my oncologist offered a transfusion, but I don't feel it's that bad and I should improve a bit without the chemo.

I continue much the same, I have no symptoms from my disease and little from the Folfirinox. My stomach has been more settled and I continue with Creon 40,000, 25,000 and 40,000. I also take Omeprazole to prevent heartburn for the first week after the chemo. I also have a multivitamin tablet and continue with the bitter melon capsules.

[J_T]

Hi Mark, sounds like you are doing really well on Folfirinox, that's just great!

Have a fabulous month off and a lovely time in France, its so beautiful there.

Wishing you continued good results.

Julia x

[MelindaEverettutu]

Hello to all, Can any one tell me where I can find more info regarding the symptoms and treatment of Dysarthria ? Thank you very much

[Slewis7313]

Melinda, I think you may be on the wrong forum as we discuss matters here concerning Pancreatic Cancer. I do not believe Dysarthria is something which is in any way related.

Steve

[J_T]

Steve, its a side effect of Folfirinox. It think the irinotecan causes it temporarily. It affects speech.

[Slewis7313]

Ah, apologies all round!

Steve