Trevor's Story

Firstly I want to thank every one on the forum for all the help and advice I have gained reading all your posts, I have cried and smiled along with you all unfortunately there have been more tears than smiles.

So if we too can help anyone else here is our story.

It started in December 2012 with Trevor being diagnosed with type 2 diabetes, feeling very tired and having pains in his abdomen, which we thought originally were from the Metformin, he had suffered from diverticulitis on and off for the previous 18 months, but this was different. After visiting the GP some 5 or 6 times he was sent for an ultrasound on his gall bladder at our local health centre, on the 2nd May 2013. A young man did the actual scan, but there was also a lady there watching another screen, as the man moved the probe around to spread the gel, she suddenly said "what was that go back and have another look". On further investigation they said there was something on the tail of his pancreas with something like fingers and it was waving at them. The following morning the GP surgery rang and asked Trevor to go into see the GP on the Tuesday as it was a holiday on the Monday, but he went straight in and the GP did speak to him and told him it was nothing, and not to worry!! She said she would make an appointment for him to see a consultant. I went on the internet found this site but could not find much information about pancreatic cysts. We did finally get an appointment for the 31st July, 13 weeks later, this was to see an Endoscopy specialist, I now blame myself for not pushing for an earlier appointment, but I think I was lulled into a false sense of security.

We went to see the registrar and she said they would have a CT scan done and see us again in 4 weeks for the results, and they would probably just monitor the cyst.

He had his scan on 22nd August, the next day the hospital phoned to say an appointment had been made for the 29th August with another specialist, when I looked on the internet I found out he was a surgeon and that's when my worst fears were realised. We attended the appointment and the surgeon explained he would operate and perform a sub-total pancrectomy removing 2 thirds of the pancreas the spleen and part of the stomach,on the 11th September

The tumor/cyst had gone from 1 cm on the 2nd May to 8 cms on 22nd August, the operation went very well, they didn't have to take any of his stomach away, and he was home one week later, within 4 weeks he was pottering in the garden.We went back 6 weeks after the op for the results and were told the tumor had spread to the spleen, there were cancerous cells on the outside of the tumor, and of the 7 lymph nodes removed 2 had cancerous cells. Devastated was not the word, saw the oncologist and started 5 FU on the 18th November.

When we saw the oncologist he said in July Trevor's tumor markers were 1550, on the 8th

November they had dropped to 246 so that was good news.

Then in between Christmas and New Year Trevor's PICC line went wrong it had curled back inside the vessel, so has been sent back to the manufacturers, and when they put the new one in, Trevor asked if they could check his tumor markers, which they did. They told us they had previously risen to 1000 and now had risen again to 1990, we saw the Oncologist and he arranged for a CT scan, and when we saw him again, he told us there were now one or two small tumors not where he expected back in the pancreas but in the Liver near his gall bladder. He said the 5 FU was obviously not working, Trevor had had 6 , so he was changing the chemo to 5 FU plus Oxaliplatin and Irinotecan which he started on the 10th February.

He has not been too bad, he has had tingling in his fingers when touching anything cold, had a bad day on Saturday day 5, and is just so very tired, but he is still eating well, today he has a sore tongue and a metallic taste in his mouth, but not as bad as many others have been.

So that's us up to date oh! and by the way Trevor is 67 and we have been married 45 years, we are coping because we have to, but do get great support from our specialist centre and our family and friends. sandrax

Hi Sandra, and welcome properly to the forum. Sorry to hear of the awful time you and Trevor have been having. We had a similar situation where they first saw a mass on my husband Paul's pancreas in jan last year, and we're told that it was not cancerous so they would keep an eye on it. When we saw a surgeon in May he said it needed to be removed, and it turned out to be malignant, and during the delay had undoubtably grown and spread to his lymph nodes.

Like you I beat myself up thinking I should have insisted we saw the surgeon earlier and got something done, but as so somebody said to me recently, if someone tells you it is nothing to worry about, why on earth would you not want to believe them, when they are the ones who should know?

I am so pleased to hear that it sounds like Trevor is now receiving good care, and that he is eating well, which is such a good thing. As I am sure you have seen from other posts this darn thing is always throwing up new problems, but it sounds like you are a good team, which is so crucial.

I really hope things start to improve for you both, and please keep us posted,

Best wishes,

Nikki

Hi Sandra, thank you for sharing Trevor's story, such a shame so much time was wasted at the outset, but good he has been able to undergo surgery. I hope his new treatment can sort out his liver problems. The fatigue is awful and was always one of Ray's major problems.

Ray had just turned 62 when he died last October and we would have been married 42 years this April.

Do keep us informed of Trevor's progress, we're always here to listen.

Julia x

Echoing Nikki and Julia's welcome Sandra.

Sorry to hear about the journey so far, which has had its ups and downs. Also, pleased to hear that you have a good care team, and that they are vigilant with Trevor.

The Folfirinox regime (the triple combination he is now on), has shown good results, so lets hope that Trevor has some good results and that the tumour responds to the chemo. The metallic taste is probably from the oxaliplatin drug and is a common side effect of these drugs (platinum based drugs).

If you have any further questions about anything related to pancreatic cancer, please do contact us at support@pancreaticcancer.org.uk

Kind regards,

Jeni, Support Team.

Hi Sandra

I'm sorry to read of Trevor's journey so far but very pleased that he seems to feel well.

My Jonathan was diagnosed in December 2012 having had abdominal pains for a little while. He also started on folfironox which he tolerated quite well. His biggest issue was also with fatigue which hit him normally day 5 to day 9. He also had tingling in his fingers and toes which was his second biggest complaint. You can try experimenting with the steroids a little which might help so you come off them more slowly. This worked for us but also had an undesired side effect of raising his blood sugar to the point where he needed insulin injections (something you'd obviously need to bear in mind for Trevor). Finally Jonathan had a sore mouth so he used to use my lip salve (which helped) and Nistan for mouth ulcers.

It's not the most pleasant chemo regimes but it did work for us by stabilising then reducing the tumour after having it.

Best of luck

Cathy xxx

Hi Sandra,

I'm a newbie here also, and everyone is absolutely amazing with me, and I don't feel so isolated when I am here.

Sorry it was slow for your at the beginning, but please don't blame yourself, you wasn't to know. You are there now, and that is what is important. He needs your love and support now and in the future.

Hopefully this forum will help you to ask the right questions, if need be, and to understand everything. I know it can all be very daunting.

Congratulations on the 45 years, you must have a very special love.

Take care

Leila x

Sorry to hear you're part of our PC family! Like they say, you can't choose your family so we'll try to at least be as helpful as we can. I hope things get a little more straight forward for you and that he is tolerating chemo quite well, that in it's self is fantastic. Keep us up to date x

Thanks for your kind replies, yes Rob as lovely as you all are, it is a family I wish I did not have to join. I had to smile at Carl saying it was his Kidney not his Liver, what is he like! He seems to be having a such a rotten time with the Chemo, thankfully Trevor is not that bad by any means.

We are keeping an eye on his sugar levels Cathy, and like Johnathon they go up with the steroids, the hospital don't seem too worried but we see the Oncologist next session and he did say he could alter the steroids if necessary, so I think I will ask him if he can do that for us. We also see the GP tomorrow, but honestly, they do not give us much help,in fact the GP said she didn't really understand Creon she knew it was an enzymes replacement but that was all, I think if I was her. I would want to research it so I understood it more and could give more support.

Nikki I have read your and Paul's story, and know how lucky we were to get surgery but agree perhaps if things had moved more quickly the disease would not have spread.

Julia I also read your and Ray's story and its such an blessing to have been together for

so many years.

Leila thanks for your kind words and I am sure your Dad understands that you are trying to do your best, but its hard for parents to accept that their children have grown up and the caring role is reversed.

Jeni I am sure you will be hearing from me soon enough. I am sure over the next few months the problems will keep coming and its so good to know you are there and such a great support.

Trevor had his 2nd Folfirinox yesterday, and the tingly fingers are back with a vengeance

along with one foot? of tingly toes!! he is quite down at the moment even though he is on steroids, but I'm sure that's just the Chemo talking, but on the bright side he has just had a carvery followed by a pudding!!! love to all sandrax

Keep positive Sandra, and please keep posting.

I personally need the support I get here, and feel very safe and supported being here. If only to lurk around.

Leila x

Hi Sandra,

We would be more than happy to speak with the GP concerning the enzyme therapy should they wish to give us a call. Alternatively, they can be directed to our website where there is specialist dietitian checked information.

Kind regards,

Jeni.

Thanks for that Jeni, we have been to the GP this morning actually this time she was much more sympathetic and helpful, Trevor's blood sugars are still higher than they should be so she has given him another extra tablet and asked for a urine sample. She thinks it best that we be referred to a diabetic nurse specialist, she said they have more expertise in dealing with more complicated cases,as like she said we don't know wether the remaining third of of Trevor's pancreas has decided not to produce insulin any more or if it is the steroids and the chemo that are upsetting things. He had a urine test and there are no ketones? in his urine so I suppose that's good.

I told her I was going to email you regarding Trevor's creon, as you are the experts, ahe seemed happy with that, so at the moment she probably won't want to get involved, so I will drop you a line later today thanks again sandrax

No problem at all Sandra.

Absence of ketones in the urine is a good sign.

Jeni.

Today we went for our appointment for the results of Trevor's C T scan, unfortunately our consultant was away on holiday, so we saw a registrar. The information was not as detailed as we would have got from the professor, but basically both the tumours had shrunk but by how much we didn't find out, they were supposedly very tiny to start with anyway. Trevor had his PIC line removed, which is great, as we go to Gran Canaria next Monday for 2 weeks not that he will go in the pool anyway, but its not such a constant reminder. We go back to see the consultant at the end of June, so its all good for now at least, so some GOOD NEWS take care sandrax

Excellent news indeed Sandra. Enjoy the sun!

Steve

X

Really great news for you both. Hope you have really good, well earned holiday.

Julia x

Congrats on the good news! Long may that continue

Rob

x

fantastic news, have a fabulous holiday

love jayne

Have a wonderful time away , Trevor and Sandra.

Jeni, Support Team.

We had a great holiday, Trevor was fine as long as he had a good long sleep in the afternoons, 2 hours the first few days but down to an hour at the end of the holiday.

We were spoilt at the hotel with birthdays cakes, candles, singing, flowers and wine, our 2 sons and their families arranged a meal at a restaurant overlooking the beach, with the help of the hotel manager, so it was a really special time, we are very lucky.

I spoke to the Diabetic nurse specialists before we went away, to check that as Trevor's blood sugar had dropped back to normal perimeters that we didn't need to use the insulin unless it rose again, she informed us we needed a letter to fly with insulin, which she provided for us within the hour. She agreed that Trevor didn't need the insulin but to take it with us just in case and carry on with the Metformin, So even though I was worrying that the remaining third of his pancreas was not working as well it was, obviously it was the chemo that was affecting his blood sugars. We had already informed the airline that we needed extra hand luggage, so we packed the bag with all the necessary medication, copies of his prescriptions, fit to fly letter and letter to carry insulin. Guess what no one asked to see a thing, bag went through security with all the Fragmin injections, but no one seemed at all bothered, same on the return journey, we flew from Leeds Bradford so it might be different at another airport.

Since we returned home Trevor has been working in the garden he has been hard at it digging, planting, painting,cutting hedges, digging up trees and making fences, been outside 8 hours a day, think he is sick of being with me so is getting a break lol. I was a bit worried he might be doing too much but the Macmillan nurse rang the other day and said just to let him get on and do what he wants to do.

We go back to see the consultant on the 30th of this month but we will cross that bridge when we get there, for now things are good and we feel truly blessed, take care sandrax

Absolutely wonderful news Sandra. You always think about everyone else and very rarely post yourself, so it is really great to read Trevor's progress. You seemed to have everything under control and made sure you both had a great holiday. I think the garden is their world, where they can be by themselves and get the jobs done in peace. My dad loves to be in the garden, and when he is there, he wants to be there on his own. So I would agree, maybe just a tinsy bit sick of you! ( joke ).

Leila xx

We went to see the consultant again on Monday,he filled in a bit more detail about the last scan and the shrinkage of the tumours, one had reduced by almost half, the other had not changed by much, but the good news was his tumour markers are now down to 220.

He said because there will be scarring from the operation in the pancreatic bed, it will not be easy to see if there is any recurrence of the tumour on the C/T scan, so he is going to use Trevor's tumour marker to decide when or if to restart treatment.

He also said that some people's markers don't rise even when the disease is very advanced, so I suppose we are lucky that Trevor's seem to be giving an extra marker.

We go for another scan at the beginning of August, then have another apt to see the Professor, so if the scan shows no change but the the tumour markers have risen then Trevor starts treatment again.

Its worrying that he seems to expect that the disease will return at the site of the operation, and soon, it is 10 months now since Trevor's op, and he continues to be well, so we just have to stay positive and I do know how incredibly lucky we are. take care sandrax

Such good news that there is shrinkage Sandra, not a word we hear enough on this forum! Hope you can relax a little and enjoy the summer,

Best wishes,

Nikki

great news about the shrinkage and fantastic the marker is going down,

love Jayne x

Sandra, that's brilliant news. Really happy for you both and so good to hear some positives in connection with PC.

Fiona X

Good news Sandra. It is so good to read some good news on here. How does Trevor feel with the news? I'm asking that because when my dad gets good news, he seems to go quiet for a day. I don't know if it is because he is reflecting the news.

Hope Trevor still has plenty of gardening to do, think there is some good weather ahead.

Leila. Xx