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Helliemo
Posts: 24
Joined: Fri Dec 18, 2015 11:46 pm

any information or experiences very welcome

Postby Helliemo » Sun Dec 27, 2015 3:33 pm

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Last edited by Helliemo on Thu Apr 14, 2016 12:34 am, edited 1 time in total.

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: any information or experiences very welcome

Postby sandraW » Sun Dec 27, 2015 9:50 pm

Hello Helen,
Welcome to the forum, the place no one wants to be, but where I am sure you will get lots of help and support, its quiet at the moment as its the holiday period and people are busier than normal.
I cannot help you with the Nanoknife, but a couple of people on here have had it, Carl and Steve, the nurses are available Monday to Friday, normally, but again as its holidays they are not posting, but they did put on a thread when they will be back, I think its Tuesday. They are the people to speak to they are amazing and very approachable, and will give you lots of information. I hope your Grandma continues to stay well, take care sandrax

PCUK Nurse Jeni
Posts: 1025
Joined: Mon Jun 14, 2010 1:30 pm

Re: any information or experiences very welcome

Postby PCUK Nurse Jeni » Thu Dec 31, 2015 3:23 pm

Hi Helen,

Thanks Sandra for helping Helen out. We are actually here for shorter days and then back next week from Monday 4th January.

Helen - so sorry to read about your grandma. Has she actually had the diagnosis confirmed Helen? Weight loss and diabetes (new onset), are very common in pancreatic cancer, or an underlying issue with the pancreas, whether benign or malignant. The weight loss can initially be contributed to the diabetes, and actually, once this is treated, it may settle a bit. However, one of the most common causes of weight loss in pancreatic disease is pancreatic exocrine insufficiency - basically, not enough pancreatic enzymes to digest food properly. She would need enzyme supplements, such as CREON, as soon as possible - you won't be able to obtain these from foodstuffs, I am sorry to say. She should also be taking a medication to help her stomach be less acidic, which helps the enzymes work better. These are called Omeprazole or Lanzoprazole. A good idea to to take an "off the shelf" multivitamin, as fat soluble vitamins are often lost when there are not enough enzymes.

Her Gp should be able to provide the creon - do ask about this, and also, once the hospital is back up and running ask for a referral to a pancreatic specialist dietitian for your grandma. They will be able to advise her better when it comes to her diabetes.

We will be back at work on Monday 4th January, and you are welcome to email us on support@pancreaticcancer.org.uk and we can respond accordingly.

Kind regards,
Jeni, Support Team.

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: any information or experiences very welcome

Postby Ant11 » Sat Jan 02, 2016 12:35 pm

Dear Helen, you will find the support nurses an amazing source of information. They will guide you every step of the way. Their help to us has been invaluable x

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: any information or experiences very welcome

Postby Didge » Sat Jan 02, 2016 10:33 pm

Hello Helen. Has your Grandma been offered the Whipple operation? If so, the surgeons will assess her to see if they think she is fit enough. It is the only chance of a cure at the moment although the biopsy should show how aggressive the tumour is and that can make a difference to a treatment plan. You seem to be amazingly organised with the alternative stuff though - all of which I am familiar with, (although my partner wouldn't take most of it or at least not regularly) so at least you are doing something. You also may need to keep chivvying your medical team along. Certainly with aggressive tumours, time is of the essence - as I was once told, every day counts, so do chase them up. I think some NHS hospitals do nanoknife but most on here have visited professor Leen at the Princess Grace Hospital so if you want to contact them, you will no doubt get advice. Would be nice to at least know what your NHS team have in store first though! Good luck, Didge x

mandyscott
Posts: 1
Joined: Thu Jan 21, 2016 8:53 am

Re: any information or experiences very welcome

Postby mandyscott » Fri Jan 29, 2016 3:53 am

Be relaxed, Hellen,
I believe everything will be good. as for your post here, I think the drug field is developing faster and faster. And she will be alright.

Helliemo
Posts: 24
Joined: Fri Dec 18, 2015 11:46 pm

Re: any information or experiences very welcome

Postby Helliemo » Sat Jan 30, 2016 12:08 am

Hi,
Thank you all so much for your replies. I've been meaning to write on here for ages.
The diagnosis was confirmed and last Friday my Grandma started folfirinox, which is going terribly.
With the folfirinox there is a glucose solution? Is that right? Assuming that is the case, this caused her blood sugar to soar so much that she temporarily lost her vision, which hasn't yet properly returned. Does anyone else have any experience of this?
For the past three days she hasn't been able to get out of bed, she is suffering terribly from weakness, fatigue, dreadful vertigo, acid reflux, shaking, vacant minded, afraid etc. It is heartbreaking to see. I feel so helpless. She is forcing food and drink down, but it is a real struggle. Tomorrow morning, if she is still in bed, I am thinking of ringing the chemo unit and asking them to bring an IV of fluid for her, does that sound like the right thing to do?
My aunty has suggested that we encourage her to start injecting insulin instead of taking 4x500mg metformin/day with 2x other diabetic tablets(I've forgotten the name and mg) she thinks this could help with the acid reflux/indigestion and also give my grandma the relief of 6less tablets to take a day. I think my aunty is right about this.
This experience of folfirinox has made me extremely opposed to another round, even with a dose reduction. Does anyone know anything about perhaps swapping to gem/abraxane?
Not far from us is a clinical trial for a new immunotherapy drug called, plerixafor. I'm wondering if I should look into this as an alternative to chemotherapy altogether? but I'm cautious to make such a radical move.
If anyone has any advice at all I will really really appreciate hearing from you.
Thankyou,
Helen

boa
Posts: 129
Joined: Thu Jul 09, 2015 1:13 pm

Re: any information or experiences very welcome

Postby boa » Sat Jan 30, 2016 7:33 am

Hello Helen

I think your Grandma is likely to be taking steroids as part of her Folfirinox regime. In my husband's situation this caused his blood sugar to go sky high and instead of tablets he had to inject insulin. Folfirinox is a very aggressive regime and can cause many side effects. That your Grandma's vision has got so bad is worrying and this is likely caused by high blood sugar. If you have not already done so since she had the chemo I would contact the unit or the helpline number you have been given.
Catherine

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: any information or experiences very welcome

Postby Didge » Sat Jan 30, 2016 2:18 pm

helen, my advice is to always look into everything. My understanding of trials is that you can't have had chemo for 4 weeks before but that is from memory. By all means make enquiries. Folfirinox is tough but some people have minimal side effects so it is always worth a go as it is the drug of choice for those able to withstand it. Blood sugar levels can go haywire for all sorts of reasons, the chemo and as Catherine has said, steroids and also because the pancreas is also not working properly - also eating and not eating can affect the levels. They do need to be managed all the time so definitely get advice on that! Didge x

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: any information or experiences very welcome

Postby Proud Wife » Sat Jan 30, 2016 5:43 pm

Hello Helen

If I was you, I'd definitely be ringing the chemo ward for advice. Please don't wait. Even if a problem was nothing serious, there's never, ever any harm in asking.

Although it's my hubby who's the PC sufferer, I am diabetic and currently on a short course of steroids myself which is sending my sugars through the roof, which in turn gives me blurred vision but you need to check (along with all Grandma's symptoms) that it's nothing other than high blood glucose that's causing the temporary vision problems. What's her blood sugar reading at the moment.

Reading through your first post, I just have to say your Grandma is really lucky to have such a caring, considerate grand-daughter and I know you will do everything in your power to help her.

Let us know us what the unit had to say when you get a chance. Good luck Helen xxx

Helliemo
Posts: 24
Joined: Fri Dec 18, 2015 11:46 pm

Re: any information or experiences very welcome

Postby Helliemo » Sun Feb 14, 2016 7:40 pm

Hi,
thank you all so much for taking the time to write to me.
I did take Lib(my gran) to a&e in the end and she had an IV of fluid for 8hours, which seemed to improve the vertigo and, strangely lowered her blood sugar. Perhaps a dilution of the blood caused it?
Anyway, tomorrow morning will be her next session of folfirinox but a much lower dose. So,we shall see how she reacts.
We had some very good news last week, a CT scan showed "much the same" results as Lib's first scan in November. This is with only the one session of folfirinox. So in 4months there has been no disease progression. Is this normal or are we right to be ecstatic about this?!
We are booked for nanoknife with prof leen on 24th. And if this all goes well and folfirinox continues to cause my gran to have an awful quality of life, we will stop chemo. Possibly ask to be prescribed capecitibine tablets for home administration. Is this a really an irresponsible thing for me to encourage? Does anyone have any experience of capecitibine?
Thanks for the replies from everyone, I so appreciate every message,
Thank you xxx

Helliemo
Posts: 24
Joined: Fri Dec 18, 2015 11:46 pm

Re: any information or experiences very welcome

Postby Helliemo » Sun Feb 14, 2016 7:48 pm

Thanks proudwife for the advice.
At the moment Lib's blood sugar is about 8 in the mornings before breakfast and then about 13 before dinner. We are happy with this at the moment as she hasn't had to inject insulin yet and he diabetic nurse said she won't have to apart from alongside chemotherapy/steroids.
I read that cinnamon and graviola tea both help blood sugar and artificial sweeteners are actually as bad as sugar. Apart from stevia. Obviously I'm not a doctor but I just wanted to offer you some kind of advice to thank you for writing to me!xxxx

Helliemo
Posts: 24
Joined: Fri Dec 18, 2015 11:46 pm

Re: any information or experiences very welcome

Postby Helliemo » Sun Feb 14, 2016 7:55 pm

Didge thankyou for both of your replies. Yes you were right about the trial and 4weeks without chemo so have put that to one side for now.
I have read through a lot of your posts and I am so sorry. I wish I could do something for you because you are amazing. You've been through so much and you continue to help others. I was so happy to read about your new arrival! I bet you are such a nice grandma! Xxx

Helliemo
Posts: 24
Joined: Fri Dec 18, 2015 11:46 pm

Re: any information or experiences very welcome

Postby Helliemo » Sun Feb 14, 2016 8:04 pm

And thank you to everyone else for your replies, it definitely encouraged me to contact the emergency numbers without feeling like I was wasting their time and it could be unnecessary. Sandra I really appreciate that you were the first to message me, and I'm glad you are here despite your dreadful time, another amazing woman.

I will update with Lib's reaction to this weeks folfirinox.
Xx

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: any information or experiences very welcome

Postby Proud Wife » Sun Feb 14, 2016 8:10 pm

Hi Helen

No disease progression I think is brilliant news! After 4 months and just one cycle of folfirinox, I'd be celebrating too! I think Lib would need more cycles to evaluate further and to see if it will shrink the tumours but even if it doesn't and Lib remains stable with no progression, that's great too.

I am really interested to hear how your appointment re Nanoknife goes on the 24th, please post when you get a chance as it's something I'd like to consider for hubby but know very little about it currently.

I can't help regarding capecitibine but I think it's equally important that your gran has some quality of life. It's a really, really hard decision to make.

With regard to blood sugar, around 8 in the morning, given that diabetics (don't know about diabetics who have PC) should aim for levels between 4-7, I wouldn't worry about the extra one. I'm currently between 9 and 10.8 before breakfast which is not brilliant and that's with full diabetic medication :(

Sometimes I find it really difficult to test blood during the day because either I forget or I may have had a snack between meals. The rule is to wait at least 2 hours after food before testing blood. Are the readings of around 13 taken on an empty stomach or would Lib have had a snack like me that would affect her levels?

I've not heard that artificial sweeteners affect blood sugars although there's lots out there in the media that says they are not good for you. There again, anything that taste nice is not good for you either!! xxx