A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Tue Jun 07, 2016 2:47 pm

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

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Thu Jun 23, 2016 10:15 pm

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

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby sandraW » Thu Jun 23, 2016 11:31 pm

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

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby boa » Fri Jun 24, 2016 7:16 am

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

PCUK Nurse Chris
Posts: 17
Joined: Wed Jan 14, 2015 4:03 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Chris » Fri Jun 24, 2016 12:19 pm

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

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Sun Jun 26, 2016 11:45 am

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

PCUK Nurse Jeni
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Jeni » Mon Jun 27, 2016 11:29 am

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.

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Wed Jul 06, 2016 12:35 pm

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

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby jay » Wed Jul 06, 2016 4:35 pm

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

PCUK Nurse Rachel C
Posts: 61
Joined: Wed Jan 14, 2015 4:25 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Rachel C » Wed Jul 06, 2016 5:37 pm

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/vi ... 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/poli ... mpaigning/
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

Dandygal76
Posts: 763
Joined: Sat Mar 12, 2016 9:49 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby Dandygal76 » Thu Jul 07, 2016 8:30 am

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

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby sandraW » Thu Jul 07, 2016 9:56 am

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

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Thu Jul 07, 2016 3:12 pm

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Wife&Mum » Thu Jul 07, 2016 4:45 pm

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

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Mon Jul 25, 2016 8:30 pm

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