Mum of 42 recently diagnosed inoperable PC

Thanks Sandra.

I know you are completely right and believe me I am resting and sleeping a lot. I am sleeping a good couple of hours each afternoon, resting a lot of the remaining time and sleeping a lot at night. I know it's normal and very important for recovery. It's not nice and I have anxious thoughts about how long it will last but I do know it's normal and I just have to be patient and take it easy.

Ruth xx

Hello all

We arrived back in the UK a week ago today. We spent 3 weeks in Germany in total and I was an inpatient for just over 2 weeks. I am going to write my story so far over the next few days for the stories section on this site. I will go into much more detail about my experience so far in this story.

I am ensuring I rest each day. I usually have a nap or lie down for a couple of hours every afternoon. This really helps and my body tells me when I need to do this. I am pre diabetic and am having 6 weekly bloods to check this. I also have an illeostomy which can be reversed in 3-6 months time. Due to having the whipple, an illeostomy and being pre diabetic it's been a bit of a nightmare trying to work out what I should be eating/drinking. The biggest concern and main difficulty I've been experiencing is management of the illeostomy. Apparently it takes 4-6 weeks to settle down and for output to reduce. High output is common at first and this is what I've been experiencing. It's difficult as means I have to keep emptying the bag but also there is the risk of dehydration and malabsorption. I've seen the stoma nurse this week and I have spoken to a dietician today whilst having my review at the specialist cancer hospital I attend. Both were excellent and I feel I'm getting control of it now and will be a bit of trial and error with Loperimide dose and certain foods.

Not surprisingly I lost weight after surgery but I can't afford to lose any more weight so the aim is to increase my weight by 7-10 pounds over the next 6 weeks. I never thought I'd be in a situation where I was trying to gain weight!!

My operation scar is healing very well and I'm walking well. My G.P surgery and all the team involved have just been brilliant. Unfortunately my bloods done this week also indicated I am anemic and apparently this is also common post surgery. I've started Iron tablets today and will have bloods repeated next week. I have a cupboard full of medications at the moment and have had to write down what I take and when!

I had my review with my Oncologist today and this was the first review since I went to Germany for surgery. It was interesting as they said they had not had this situation before where someone has had 9 Folfirinox then had surgery, so I'm a bit of a unique case as not fitting the protocols with how things are usually done. My Oncologist is in agreement with Germany in that I complete the remaining 3 Folfirinox. The plan is,.. I have a CT scan at the end of July (2 months post op) so we have a baseline post surgery. If all ok I will then have remaining 3 chemo at 2 weekly intervals throughout August and this would finish at the start of September. The plan would be 3 monthly CT scans and regular bloods, CA-19's.

I asked about the recent research study on Gemcap which W&M posted a link to a few weeks ago. I was told this is usually used if someone has had surgery first without any chemo or in the future if the cancer returned it would be considered. This makes sense to me and Folfirinox has worked well for me so far and good to know gem cap would be future option for me if required.

I am looking forward to having 5-6 weeks without any hospital appointments or treatment. We are going to London for a long weekend and seeing Carole King perform Tapestry in Hyde Park, then we have two weeks in Spain mid July. Hopefully I will gain strength and weight!

Ruth xx

Hi Ruth, Glad to hear you are having those rests lol x, very very glad that you are doing so well, its fabulous news. Hopefully your stoma issues will settle down, you certainly have a lot on your plate at the moment, with all the different medication, fingers crossed it all settles and you can enjoy Spain where you can build yourself up again. I look forward to reading your story, please take care love sandrax xx

Hi Ruth

Thanks for the update. I'm glad it is all going so well. Just pace yourself and do what you can. It's possible the biggest operation done!

Catherine

Hi Ruth,

Thanks for keeping us updated on your treatment and care and providing your story for others to read. We are glad to hear that you returned from Germany safely. It is positive that you are receiving input from specialists, such as the stoma nurse, to manage some of the complications that have arisen.

Take care and please continue to keep us updated on your progress

Chris

pancreatic cancer nurse specialist

Support team

Good morning all

Just a quick update. My stoma appears to be settling down! woo hoo! I don't want to speak too soon though, but the dietician I saw at the specialist cancer hospital the other day was excellent and hopefully his advice on how to manage it is working.

I now feel in a position to do some fundraising and awareness raising for PC. I want to speak to the PC nurses about some facts and figures regarding PC first,..for example if it is known how much money is invested into PC compared to other cancers each year, up to date statistics related to the disease and treatments on the horizon. Others on the forum maybe able to help me with this information too. The information I am interested in is where we are currently up to with this disease.

Unfortunately I cannot find the emails from the support nurses so have no contact email. I would appreciate it if one of the nurses could email me so I can then communicate with you.

Thanks very much and greatly appreciated

Ruth

Hi Ruth,

Great to see you are back, and doing well!

Our email address is :

Support@pancreaticcancer.org.uk

Take care, and stay well!

Jeni.

Hello all

I am very nearly 6 weeks post whipples. We have just had a really good few days in London. We saw Carole King in Hyde Park on Sunday which was brilliant. We saw a show and the Rolling Stones exhibition which was excellent. One problem with London is the fact that you don't realize just how much walking you do. By the end of the two days I was really starting to feel tired and stooped. I am taking it easy today now we are home.

I am still struggling to gain weight and stoma output is hit and miss. My operation scar is healing well.

I'm determined to enjoy life as much as possible at the moment. Although I'm making sure I pace myself and recover I'm finding distraction is very good so within reason I'm keeping busy and occupied.

We are escaping to Spain for a few weeks on Saturday. It's going to be hot so I need to be extra careful with fluids due to stoma.

I read the 'new treatments' thread and it makes me so angry that pancreatic cancer has not got better treatments. It's incredibly disheartening when you read about other cancers being so much more advanced and researched. I hate it when you google PC and it says this is the cancer with worst survival stats. I read 9.500 people are diagnosed with PC each year. Around 50,000 are diagnosed with breast cancer so I understand this is more but nearly 10,000 people diagnosed each year with PC is a significant number yet under researched and under funded. Maybe questions which the PC nurses can answer - why does PC have worst survival rate out of all cancers? Is it due to fact it's usually too advanced when diagnosed so surgical removal only possible in small minority? Or is it because treatments aren't effective as for other cancers? And why has this cancer been neglected? Will there be more funding and recognition to improve survival and treatments for PC and is there anything myself or others can do to help this process? Who are the people/departments to write to or contact to make PC more of a priority?

Ruth X

Glad you had such a great time in London you are doing so well.

(I remember when my was husband was diagnosed with pc and I googled it, I honestly thought the computer had froze on the survival rates and restarted it, couldn't believe the numbers.)

Have a wonderful time in Spain and take care

love Jayne

x

Dear Ruth,

Thank you for posting and keeping us up to date…you are truly amazing! Only 6 weeks post whipples and your jetting around London…..fantastic!

I’m not sure if you saw my post in the ‘new treatments thread?

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=2&t=1795

I somehow went off on a little bit of a policy and campaigning slant (apologies everyone!) and added some links about the work that we are embarking on as a charity.

Ruth, there are many ways to help us make changes for the future, so please do look at our Policy and Campaigns web link, there may be something that you are interested in helping with…perhaps when things are a little more settled post surgery.

http://www.pancreaticcancer.org.uk/policy-and-campaigning/campaigning/

Unfortunately there are many challenges in relation to pancreatic cancer, most of which you will all already be aware of:

• Often pancreatic cancer doesn’t cause any symptoms to begin with or symptoms are vague and non-descript.

• The location of the pancreas deep in the abdomen and the complex venous system that is embedded around the head of the pancreas.

• Pancreatic cancer is rarely diagnosed when surgery is an option…sadly.

• Often pancreatic cancer has already spread to outside the pancreas, or to other organs of the body when diagnosed.

• Often people have also lost a lot of weight, before they are diagnosed and their general state of health may have also deteriorated.

• We lack markers for early detection, making it impossible to have an effective screening programme.

• Not always, but often patients are diagnosed after the age of 60yrs and may also have other health issues (again, not always), which makes treatments more complex.

• The molecular and cellular features of pancreatic cancers can be aggressive and are not fully understood (and are better understood in other cancers, such as breast and prostate cancer).

• Little progress has been in relation to advancing treatments for pancreatic cancer- which was highlighted, also in the New Treatments thread.

Again and on a positive note, we are beginning to better understand some of the molecular and cellular feature of pancreatic cancer and this in itself, will hopefully lead to more and better treatment options for patients.

Once more, further research is needed to try and tackle these challenges and again, as a charity, we aim to increase our funding into research to help achieve this.

Ruth, apologies, as this is quite a brief summary, but perhaps answers some of your questions.

I really do hope that you have a fantastic time in Spain…drink lots of fluids and enjoy!

Best wishes,

Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

My sister went to see Carole King and said she was amazing. 2 days walking around London is an amazing feat post Whipple - my feet kill after just a day trooping the kids around without being post op.

I think the fact PC is underfunded is mainly greed if I am honest. 5 x more breast cancers means 5 x more prescriptions / purchases of whatever drug is developed. But I am cynical over these things.

I hope you have a lovely time is spain, you deserve some good times. x

Ruth, you are amazing!, enjoy Spain, and just take care of yourself. love sandrax xx

Thanks all

Once I am stronger and feel I'm recovering well I will be definitely looking at the links the nurses have posted re getting involved with the charity. Myself and husband are planning a big charity fundraising night for November time. At the moment I need to focus on rest and recovery. Not something I find easy but is very necessary.

I will update once we are back from Spain and after I've had CT scan and results, so will probably be in 6 weeks time.

Ruth X

Enjoy Spain, Ruth, and all the best for the scan.

My hubby and I are holidaying in Italy at the moment - sunshine, swimming and med diet...just what the doctor ordered. Hubby's enjoying it too haha.

xx

Hello all

We are home after a lovely much needed break in Spain. I have done plenty of sleeping,eating and relaxing. I have come home feeling much stronger. I am now 8 weeks post op. I have a 2 month CT scan this week and results next week with intention of completing 3 more cycles of Folfirinox during August.

I finally got around to completing my personal story and this is now up on the inoperable pancreatic cancer stories section.

I wish everyone the best and will post again once I have had my scan results and review.

Ruth x

Hi Ruth, I am glad you are feeling stronger but I know these scans can be very stressful times. I have everything crossed for you that all is going well. I will take a look at your story.... your story of hope and courage. Stay strong and let us know about the scan as soon as you can. x

Thanks Dandygal

Out of interest how long have people experienced awaiting CT scan results? I had an horrible long wait of 3 weeks after my mid treatment scan due to Easter holidays. I have my scan tomorrow and am expecting the results in my clinic review next Thursday so it will be one week. I think this is pretty standard. I never get my CA-19 results on my review day as they take longer to process so I usually have to phone up for them or wait until my next clinic review which is every two weeks.

It was intesting as when I paid privately for the consultation in Germany I had the CT scan and the Consultant reported on the scan immediately. I know we are very lucky to have the NHS and it is under terrible pressure but I do think a faster response to the scans would be beneficial as it's such a horrid wait.

Hi Ruth, we usually have to wait a week or 2 for the scan results but it depends how quickly the clinic review takes place after the scan and any subsequent MDT meeting. The CA-19 results are usually available after 24 hours or so and we can phone the infusion suite for them or wait until the next clinic review.

I agree that the waiting is ghastly. xx

I have just edited and deleted my update. We have only told a few close people the current situation and I realized people may just have a look on the forum. PW and Dandygal thank you so much for your replies and support as always. Your words are very true. Don't worry about editing your responses. Leave them on.

I will have a break from the forum for a while. Thanks again you've all been amazing. I wish you all the best xx

Oh Ruth, I just don't know what to say to you. I am so very very sorry to hear your news.

For what it's worth, I think you did absolutely the right thing by going for surgery. I also think you are 100% right in that you would have developed liver mets regardless of surgery - who knows, maybe it would have happened sooner, had you not gone to Germany.

I don't know if your increased CA19-9 means that there's activity in what's left of your pancreas or whether it would increase solely with metastatic disease but looking at the positives (and you just have to) 8mm is very small and fingers and toes crossed, Gemcitibane will do the trick so that Prof Nanoknife can then work his magic. The progression has also been detected quickly considering your June markers so again, a small positive.

Ruth, you are one awesome, tremendously strong determined lady. This is a setback but once you are over the shock, I am sure you will rise above it and give PC another kicking. We are behind you ever single step of the way.

Take care lovely lady because we care. xxxx

Ruth, I am so sorry the whipple was not a success but please do not second guess your decision... we would all have jumped at the chance and I sent dads scans to Germany with exactly the same intention and we would of course have made exactly the same decision. I also do believe that removing the primary tumour still give you a better chance at the stage IV fight you now face.

What I will say is I sort of do and sort of don't agree with what your oncologist says from my research and experience of things. Absolutely, chemo is the only way with mets and that is exactly why my dad has stayed on the trial and not have nanoknife. This is because he cannot do both in his situation and you have to deal with what is awash in the system. The trial will not allow nano because it would skewer their results.

However, you are in a better position where having chemo and nano is not mutually exclusive... you can have the best of both worlds. Nano should be done at same time as chemo and if you wait for chemo to end then you could lose this advantage. I also do not understand why you would be strongly advised not to contact professor nano before you start chemo. It is a consultation to get another perspective on how to proceed, it is not a decision to proceed so what is the harm. You clearly seem to intend to do nanoknife route eventually so why not do the consultation now. Prof will not charge for a second consultation, the moment we are ready dad will just go for the procedure.

It is obviously your decision and you have to what is right for you but if the mets do not respond to the second line treatment your options will reduce and perhaps the nano would break down the barriers to allow that treatment through the infamous PC membrane it forms? Also, if the mets get too big too quickly then again nano will be excluded.

I know I am throwing this at you whilst your are probably feeling very shocked and emotional but best of both worlds has to be considered and you have a limited window for a decision like this. And if for one moment you choose the nano route and the oncologist suggests no chemo around it as a prudent route that the NHS do then speak to Prof over this because he believes the est outcome is chemo at the same time. We are not telling NHS we are doing it. Dad will hopefully get chemo and nano together and we will just wait for next scan and the go... by the way....I had nanoknife before you read the scan.

I know I have come across strong in my views on this but you have every right to ignore all of it and please do also bear in mind, nano does not work on everyone... there are no guarantees with PC.

I hope you have a lovely day at the beach.

Never give up, there is always hope. x

Hello all

I thought I would post a little update. I am cleaning out the kitchen cupboards and now feel nauseous so am making myself sit down for ten mins. I'm feeling nauseous as I started a gemcap chemotherapy on Friday, It's not due to the state of the kitchen cupboards!

When I last posted I mentioned I needed an MRI scan as there are some small lesions on my liver which showed up on my last CT scan. It is highly likely these are mets but we are hoping they are small enough for chemo to blast them and also hoping there aren't many so liver ablation maybe an option.

We had a bit of an ordeal with the MRI scan as I was booked into a cancelation appointment a couple of weeks ago. I was due to fly to Spain with my daughter but we moved the flights to early the next morning as I really wanted to get the scan done. We arrived at the scanning department to be told I couldn't have the scan as I had a metal stent and they didn't know the make or model and needed to find out this information as it may not be safe to have an MRI scan if a certain model.

I was really frustrated as I had told the nurse on the phone the previous week that I had a metal stent and she said she would check it all out and get back to me if there were any problems. As no one got back to me I assumed it was all ok, wrong,.. there had obviously been a communication breakdown. A lesson learned is not to assume anything and to always chase things up.

I went to Spain for 5 days with my daughter and hubby and we had a lovely time. Even though we had had the blow that there are small lesions showing on my liver a few weeks earlier in myself I have been feeling really well. I had got my energy back and felt good. In fact we went out on the road bike in Spain for a short ride for the first time since my whipple op at the end of May.

Therefore it's not surprising that I was not looking forward to restarting chemotherapy and the last time I had had chemo was the start of May so in effect I had had 3 and a half months without it. I was apprehensive to how it was going to make me feel as it was a new regime. I was also really worried as my weight has dropped since the major surgery and having an ileostomy and I just don't seem to be able to put any weight on. At my last review my weight had dropped to 7 and a half stone. Prior to the whipple surgery I was 8 stone 10.

My Consultant felt that gemcitabine alone maybe enough for me to tolerate at the current time. However, over the past few weeks I have managed to gain around 4-5 pounds and when I saw the Consultant for my review last Thursday it was felt Gemcap should be tried.

I started this on Friday the 19th. I was amazed at how quick the infusion took. It only took half an hour. A doddle compared to the all day infusion of Folfirinox. I had an MRI scan on Friday afternoon so stayed at the hospital and had this done. We won't get the results of the scan until my next review with the doctors in 1/12 time.

I started the oral capcetibine tablets on Saturday. Saturday was also my 43rd birthday. Happy Birthday to me! I had no idea how I would feel so we made no plans. I actually felt pretty ok and so we went to see the Kinks Sunny Afternoon show in Manchester which was brilliant and had a meal afterwards.

Yesterday I felt pretty tired and slept most of the morning. I picked up in the afternoon. Today I have felt ok. My main current symptoms on this chemo regime are waves of nausea, poor appetite, strange taste in my mouth, numbness in fingers and toes and fatigue. They are no where near as bad as the effects of the Folfirinox though and if they continued like this I could cope with them and think I was lucky in only having milder symptoms. I just hope the symptoms don't get worse as I have to take the oral chemo each day and have the gemcitibine once per week for three weeks and don't know if the accumulative effect will make me feel worse. I suppose everyone is different so will have to see how it go's. Having had a break from chemo and feeling better from it really reminds me just how awful chemo is. I have read of others who have suffered far far worse than I have with the chemotherapy side effects but it really is not nice stuff.

I contacted xxx to ask about possible liver ablation. He has recommended I have two months of chemo and then send him the scan reports. I don't think they will rescan me for another 3 months so will have to send them then. I have been reading through some of the threads on people who have had liver ablations, particularly RLF's thread. It has been really helpful reading others experiences and I would welcome any further advice on liver ablations and chemotherapy.

I am thinking of asking if I can have my central line out now I am on the gemcap regime. As it is only a half an hour infusion I am thinking a port could be put in instead or maybe taken out all together and have the infusion IV into my arm each week. I will ask my Consultant when I next see him. I would really like to have a swim in our pool in Spain and haven't bee able to this whilst I have had the central line in. It also effects what I wear and I'm just conscious of it being there.

Myself and my husband are planning a number of quizzes for November which is pancreatic cancer awareness month. My husband is already involved with local quizzes which raise money for different local charities each week. They are very successful. We are writing a quiz which we are going to send to the PC UK nurses and will then ask anyone on the forum if they want to use the quiz to put on their own quiz in November.

We have also arranged a music concert with local bands and my husbands band to play in early December. I am going to set up a Just Giving page and will place something on the fundraising page very soon.

I hope everyone is doing as well as possible

Love Ruth x

Hi Ruth,

Thanks for posting, I found it very informative and I am so pleased you managed to see the Kinks.

Good luck with the treatment and the quizzes, great idea, I'm up for a go!

Marmalade xx

Hi Ruth,

Lovely to read about all your good stuff (holiday, fund-raising, weight gain!!!).

As you know, my hubby is currently on Gem - only 4 more infusions to go, whoohoo. He took Capecitabine when he was having radiotherapy and the side effects were absolutely minimal. The Gem has not been too bad either, nowhere near as bad as Folfirinox though he's losing his hair again and just wants it to be finished now. He had a port fitted last year for the Folfirinox, it hasn't given any trouble and he was able to swim with it on holiday.

My family have also been doing a lot of fundraising since PC reared its ugly head. I've resisted bragging so far about my wonderful daughter and son, but what the heck, I'm going to share. Last year they raised over £8,000 between them for PCUK. And it won't stop there as my daughter has a place in the 2017 London Marathon - her first. We are massively massively proud of them.

May you continue to feel well on the new regime Ruth, and may it give the liver lesions a real beating.

Love

W&M xx

Hi Ruth

I am so glad that you got away for a few days in Spain. It's a shame that you weren't able to swim - you can with a port.

I have a port and it has been really good. The real bonus is to be able to get into the sea or a pool and swim if you feel up to it.

I had a minor procedure with sedation to put it in and now have a scar and a bump, but I cover this up in the water by wearing a rash vest.

I've also had Capecitabine with radio as oral pills and found the side effects to be minimal - a bit of nausea and tiredness.

I haven't had Gemcitabine so don't know what that is like - it sounds worse than capecitabine but easier than 5 FU.

Anyway I haven't got any update re me at the moment as waiting on scans!

Wishing you all the very best and good luck with your current treatment.

Genevive xxx