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Nelsmum
Posts: 19
Joined: Mon Apr 14, 2014 11:09 am

PC journey from Downunder

Postby Nelsmum » Thu Jun 05, 2014 12:05 am

My name is Jane and I live in Australia, born in NZ and spent 34 years in England, 12 years working for the NHS in Telecommunications. We have nothing like this wondeful site here with all its support from fellow sufferers, relatives and nurses. The Cancer Council here has started a project call Forgotten Cancers to raise awareness of cancers like PC, gall bladder, bladder, about 15 of them. I am participting in thus study and I wrote this account for them. Filled in an extensive questionnaire and provided a DNA sample, been interviewed by the local paper so an effort is being made here in Oz.

I was officially diagnosed with locally advanced adenocarcinoma of the pancreas in September 2013, just before my 56th birthday. In October 2012 I was having a lot of abdominal discomfort, and thought it may be my remaining ovary causing problems, my GP organised an ultrasound but my ovary was ruled out. I continued to feel unwell and had problems digesting certain foods, I thought it was bread/carbs but in hindsight it was fat. I had to give up my Friday night pizza treat.

I went back to my GP in December 2012 feeling terrible, exhausted and depressed. Subsequent blood results showed low vit D and that I was not taking enough thyroid medication (had been treated for underactive thyroid for many years). We also agreed I needed to lose some weight, review in a month.

I diligently set about losing weight and taking the vit d along with the increase of thyroid medication. I lost around 4 kilos and felt much better, reported back to my GP at the end of January 2013. Around February 2013 losing weight was becoming suspiciously easy, I was losing my appetite and not finishing my meals. I had had heartburn off and on for years but at this time it was very bad. I would often feel nauseous after eating. I found the smell of cooking, especially frying intolerable I would walk out of cafes if they smelt of fried food.

March 2013 was the next phase of symptoms, I started to need to pass stools as soon as I got up in the morning which was very unusual for me. Not long after nocturnal diarrhoea started, usually around 3 am and I would go 4, 5 or 6 times over a period of a couple of hours. This would happen about every 3 days. Sometimes mid morning, back to my GP, weight loss was about a kilo a week. Stool sample tests proved negative. Food intolerance was considered so I modified my diet for a couple of weeks with no improvement and continued to lose weight. My stools were not normal even when I did not have diarrhoea and they smelt terrible.

April 2013 I had an endoscopy and colonoscopy, other than some evidence of damage from the heartburn there was nothing else obvious. For some weeks I had a stitch like pain in my left side which got severe 2 days after the endoscopy so was referred to Accident and Emergency. I had a CT scan and ultrasound but all they could find was a small amount of fluid on my gall bladder, stayed overnight and the pain subsided over the next few days after a course of antibiotics. Food intolerance was still considered and I modified my diet accordingly, this continued for weeks and I was then referred back to the gastroenterologist in August 2013. She concluded from my blood tests that I had developed pancreatic insufficiency and prescribed me Creon enzyme replacement and sent me for a CT scan. I was called back for the results early so knew couldn’t be good.

She told me I had cancer but that I did not present in the classic way, the scan did not show an obvious solid tumour more a misty area with lymph node involvement so I was referred for an endoscopy ultrasound and biopsy. The doctor who performed this told me my pancreas looked fine and he did not biopsy it but did biopsy a small tumour in my abdomen near the aorta, two more weeks dragged on with me being told that my blood results showed no elevated cancer markers and thebiopsy was inconclusive. By this time I had lost 16 kilos and was still working, totally washed out. He suggested he either repeated the endoscopy or referred me to an oncologist. I took the second option.
September 2013 I saw the oncologist who without beating about the bush told me I had cancer and that the full biopsy results confirmed adenocarcinoma. He said it was almost definitely not operable but he referred me to a surgeon to confirm. I saw him the next morning and indeed not operable. At this stage both my husband and I thought I had very little time left. However when we expressed this fear to the surgeon he said that was not the case and with chemotherapy it could be many months. I started putting all my affairs in order and started chemotherapy on September 12th 2013. I was hugely impressed with the speed my oncologist got things moving and I was sad but relieved that at least I had a diagnosis, my husband said, this thing has had it all its own way for months, now it is time for us to fight back!

I started on Gemcitabine, 3 weeks on one off. My emaciated body coped well with the regime, helped by the caring staff in the oncology unit and my naturopath who my oncologist was fine with me seeing as long as he had a list of the supplements she was giving me. 3 month scan in December show no growth or spread, a good result for this cancer. Two weeks off and then another 3 month round. Scan in late February 2014 again showed no growth or spread. The oncologist wanted to give me a rest from chemo and will monitor me.

May 15th 2014 my blood test were reviewed by my oncologist and showed no cause for concern, nothing had changed so in 5 weeks I will have another blood test and a CT scan and take it from there.

It is now 9 months since I was told I had pancreatic cancer and well over a year since the most severe symptoms started. Such a sneaky cancer, my only real symptom was the night time diarrhoea and weight loss which could be put down to the diarrhoea anyway. I had no pain or jaundice and it was not seen on the CT in April at A&E but it must have been there. Even now cancer markers in the blood tests are relatively low. I had a general blood test through my GP to check thyroid function, vit D, glucose etc etc. They were all excellent, if she did not know my issue there would be no redflags in the results.
My biggest problem has been the diarrhoea, (-26kilos now) psychologically and physically and the lack of medical support in helping me deal with it. I was told by two senior doctors that it is not a symptom of PC. As a result of this advice I went on a bit of a wild goose chase. I had food intolerance tests (referred by gastroenterologist) that concluded I had fructose intolerance and a small intestinal bacterial overgrowth (SIBO). I was put on low dose antibiotics and had to follow a restrictive diet, a nightmare
for someone with little appetite and now mildly anorexic as I was scared to eat because of the consequences. I was also told by the gastroenterologist that there was no point in increasing my doseof Creon as it would just go through me. All this time I am losing more and more weight and scared to go out without incontinence pants on. Lots of time spent on Google and I increased my dose of Creonper meal and guess what, I went 6 days without diarrhoea. My GP asked me to see a specialist
dietician who confirmed by properly listening to my symptoms that it was fat in my diet causing the diarrhoea and Creon was the answer. It is not perfect, it is sometimes hard to judge the amount but it is way better.

I know you have to die of something, that is life but with all cancers early detection is important, PC is so hard to detect, so many of my symptoms could have been related to something else, no family history of it, although other cancers. By the time it is found it is often too late. To be honest I don't think I would have had the courage to have the Whipple operation even if it had been an option.

I feel lucky that I have had so much time, I have a wonderful oncologist and GP and I know they are doing their best for me, they both make things happen quickly when necessary. I am also lucky I have private health cover and a great oncology unit team that make me feel very comfortable.

I hope this account is some help for others looking for info but I have also posted it to say thank you to all of you for sharing your information, it has been of great help to me.

Jane C
Last edited by Nelsmum on Thu Jun 05, 2014 7:18 am, edited 1 time in total.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: PC journey from Downunder

Postby Slewis7313 » Thu Jun 05, 2014 3:40 am

Hi Jane, welcome to the forum and thanks for sharing your experiences with us. It really is the sneakiest of illnesses and diagnosis in so many cases simply does take too long. Great to hear this forum has helped you....it has been a lifeline for my family and I, being able to exchange stories and advice from people who truly understand what we are going through. Creon was a major help to me especially in the early days with my support team always saying that if in doubt, taking too many is better than too few. I am still on them at 18 months post-diagnosis and know without them that I would have struggled.
I hope the treatment continues to hold it at bay for a long time to come (for both of us and others here).

Take care

Steve

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: PC journey from Downunder

Postby J_T » Thu Jun 05, 2014 4:37 pm

Hi, I have nothing to add to what Steve has said and concur, but also wanted to welcome you properly to the forum and thank you for sharing your experience.

Regards
Julia

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: PC journey from Downunder

Postby nikkis » Thu Jun 05, 2014 6:37 pm

Hi Jane,
You have been through quite a journey with this horrible "sneaky" disease. The nurses here often say that you can't take too much creon, but sadly too few health professionals seem to know this!
Take care,
Nikki

Nelsmum
Posts: 19
Joined: Mon Apr 14, 2014 11:09 am

Re: PC journey from Downunder

Postby Nelsmum » Thu Jun 05, 2014 11:54 pm

Steve, Julia, Nikki, thank you for the welcome.

Yesterday we had some friends over to lunch, did the trad roast as I know I can’t generally go wrong with that! Followed by a cream sponge. A couple of months ago I would have just looked at the cake wistfully knowing the cream and the fat in the sponge would cause volcanic rumblings followed by the inevitable explosions a few hours later. Thanks to matey creon I got away with it.
Bananas Steve, saved my life when I was at my worst (I can be a bit prone to drama!) I use about the same amount of creon as you, at least 3 x 40,000 for a main meal.
I try and go for more protein and low fat options now. I known there are more calories in higher fat food but not worth it when they go straight through. My naturopath got me a brown rice Protein drink that I can tolerate, really low sugar and fat I couldn't stomach the other fortified drinks like Sustagen.
I have an appt with the local papers photographer this morning for the article about Forgotten Cancers, need to make some sense of my hair which I have not lost but has turned in to a brillo pad......

Jane

suef
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: PC journey from Downunder

Postby suef » Sat Jun 07, 2014 6:00 pm

Dear Jane,

A belated welcome to this wonderful forum.

I had a Whipple four years ago, the tumour on my pancreas was non-malignant, but quite a lot of my insides were removed and the remainder re-routed.

Regarding Creon, I take about 6-8 of the 40,000 tablets every day. I have 2-3 with main meals and at least 1 with a snack. It is impossible to overdose as the body produces naturally many more enzymes that we will ever get by taking Creon.

I have found since my Whipple that I cannot tolerate milk, probably because of the fat. I have seen posts from people on the forum who are adding cream to food to try to get patients to put on weight - but that is really not a good idea. I can sometimes tolerate a spoon of yoghourt or a little cheese.

Usually I eat steamed fish and steamed vegetables, which sounds really boring but it keeps me on an even keel. My surgeon told me not to drink any alcohol (not even, wine, beer etc) ever again, and I don't.

I send you my very best wishes for much courage in fighting this terrible disease. I am glad you have good medical help, unlike so many people who post here.

Love,

SueF

Fifi

Re: PC journey from Downunder

Postby Fifi » Sat Jun 07, 2014 7:13 pm

Welcome to the forum Jane.

You sound very much like you are in fighting spirits.

Pleased you have the diarrhoea under some control. My dad is suffering very bad with it, he takes 10 40,000 creon with each meal and he isn't improving. I know how much it gets him down, so it really must be a huge relief for you.

Keep fighting and standing up to this disease.

Leila xx

Nelsmum
Posts: 19
Joined: Mon Apr 14, 2014 11:09 am

Re: PC journey from Downunder

Postby Nelsmum » Sun Jun 08, 2014 2:57 am

Thanks Sue. I agree adding cream and cheese for some is not a good idea. I think it depends on the degree of pancreatic insufficiency the person has and the food you eat, different for everyone. I can tolerate milk on cereal and I eat a little low fat cheese. I keep a food diary and have found if I get the runs and look back about 12 hours or so I get an idea of what caused it. For example peanuts and crisps are now totally off the list. I agree I am lucky with the medical help here, main city, smaller population, private health cover, downside is minimal trials, they seem to only happen after they are completed somewhere like the UK or USA.

Leila, I have read your posts about your Dad, I feel for him, it really takes its toll mentally as well as physically. You don’t say what he is eating? Maybe a Sue says, some white fish and veg, perhaps pasta, low fat things might help and keep a diary? Also, I take a low sugar, low fat rice protein powder that I mix with water, I only need 1 25,0000 tab with it and it has something like 13 grams of proteino per serve, I try and get at least two of those in a day even if I don't feel like them. I have very little appetite.

Jane C
Last edited by Nelsmum on Mon Jun 09, 2014 2:41 pm, edited 1 time in total.

Judith44
Posts: 2
Joined: Fri Jun 06, 2014 9:25 am

Re: PC journey from Downunder

Postby Judith44 » Sun Jun 08, 2014 11:12 am

Hi Jane, What a nightmare all this is--I am so sorry and I add my sympathy to all the other good wishes you have received--if you go on to the site I created -selling nothing but self-empowerment- http://www.cansurviving.com (title says it all) you will find a lot to help body, mind and spirit, and Dr Roger Foggitt from NZ uses this in his practice as a counsellor --(see comment on the site)-you could also post your story on 'personal stories' there too,if you register and create an acocunt, to get more feedback hopefully- also do please pass it on 'down under'--we're all in this together and being contained by a group is a great help...Keep on keeping on and strong as you can--but do forgive yourself too for the moments when you aren't! Very best wishes, Judith

PCUK Nurse Jeni
Posts: 1099
Joined: Mon Jun 14, 2010 1:30 pm

Re: PC journey from Downunder

Postby PCUK Nurse Jeni » Mon Jun 09, 2014 11:50 am

Hi there Jane and Sue,

Thanks for all the comments on pancreatic enzyme replacements.

It is fine for individuals to do what suits them in terms of diet, but here in the UK, we do not advocate a low fat diet in any form for patients suffering from pancreatic cancer. (Sue, your case is slightly different I know). If pancreatic enzyme replacement is working as it should, there should be no reason to alter the diet to low fat or fat free alternatives. Of course, individuals are at liberty to change their eating habits should they want to, but in terms of the science behind this, there is no reason to omit fat from the diet. As long as the right amounts of pancreatic enzymes are taken, food should be digested as per a person without problems in the pancreas. A balanced diet with fresh fruit and vegetables, and including all the food groups is advised, without excessive processed foods.

It is right that you can have as many pancreatic enzymes as you need, there is no such thing as overdosing, and anyhow, these are enzymes, not medication. They will not harm you. If you find that you are taking good amounts of enzymes, but still suffering from symptoms, then it may be a case of opening the capsules, and sprinkling the contents onto mashed banana or apple sauce, and taking them in the same way before meals etc....

On the question of alcohol, again Sue, I appreciate that your case is different, and you also did not have your surgery in the UK. Some surgeons will advise against alcohol after a Whipples, but not all. As long as it is not in extreme, then having an odd drink now and again should not be contraindicated.

Kind regards,

Jeni.

Nelsmum
Posts: 19
Joined: Mon Apr 14, 2014 11:09 am

Re: PC journey from Downunder

Postby Nelsmum » Mon Jun 09, 2014 2:36 pm

Hello Jeni, thank you for the advice, I will up the creon dose again and see how go. I am not doing a low fat diet as such, just found that some things do really seem to be off the list, wine in moderation is not one of them I am glad to say.

Jane C

PCUK Nurse Jeni
Posts: 1099
Joined: Mon Jun 14, 2010 1:30 pm

Re: PC journey from Downunder

Postby PCUK Nurse Jeni » Mon Jun 09, 2014 5:14 pm

Oh Super! Well done Jane! Sounds like you are doing really well, and finding things out at your pace.

Its not a walk in the park I am sure, but you seem to have made some really good choices - well done again.

Jeni.

suef
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: PC journey from Downunder

Postby suef » Tue Jun 10, 2014 8:53 am

Dear Jane, Jeni and everyone,

I had an appointment with my surgeon yesterday evening and he confirmed that Jeni (as always!) is right, In the past, the precise dosage of enzymes in each Creon capsule could not be guaranteed, so patients were advised to follow a low fat diet but this is no longer the case. However, as I pointed out to him, I know there are some things that I cannot eat, no matter how many Creon capsules I take, for example an English breakfast goes straight through me! This seems to vary for individuals.

Regarding alcohol, we have seen in the past that surgeons in Belgium (where I had my Whipple) seem to take a firmer view on alcohol than elsewhere. My UK surgeon said that if it is a case of terminal pancreatic cancer, he would not suggest stopping alcohol, and for the rest of us it is a case of being moderate.

Sorry if I misled anyone!

On a lighter note, I had the results from the vitamin ADEK tests that we talked about elsewhere (thanks to the 'other Sue' for this) and I am fine.

Love to all,

SueF

PCUK Nurse Jeni
Posts: 1099
Joined: Mon Jun 14, 2010 1:30 pm

Re: PC journey from Downunder

Postby PCUK Nurse Jeni » Tue Jun 10, 2014 9:58 am

Thanks for that Sue!

I don't think you were misleading at all Sue - just I know that in Belgium, and other parts of Europe (Germany for example), that they have, as you say, a firmer approach, and yes, everything in moderation! I had a tutor once and his favourite expression was that "things in extremes cause problems", and that applies to most things in life I think! And yes, I totally agree with your surgeon!

And yes again Sue, some folk can't eat certain things, even with creon. That might be to do with the realignment of the bowel - not sure, but it does happen that some folk can't eat certain things.

I just think its great that you are all contributing to one another's journey and helping one another out. Keep up the good work.

Jeni.

Nelsmum
Posts: 19
Joined: Mon Apr 14, 2014 11:09 am

Re: PC journey from Downunder

Postby Nelsmum » Sun Jun 22, 2014 3:43 am

We all can do with good news and I had some on Thursday. Went for my 3 month scan and no sign of spread or growth. Still locally advanced. So it is now 10 months since diagnosis. Gemcitabine Sep-Feb and no chemo since end of Feb. Scheduled for blood test in early August which will be one year on. Oncologist was obviously very pleased and advised me to keep on doing what I am doing (better not tell him the whole story!) Only joking.

Jane C