Folfirinox started on Wednesday and other stuff

[J_T]

oh pooh! about the eyes. I dunno, if its not one thing its another!

Unfortunately we had THREE holidays booked for the beginning of the year. One looming in the Peak District when he was feeling unwell and we thought it was nothing. Ha! Then we had 10 days booked in Lanzarote in April and Florida for May/June. We had to cancel them all Lost a bit of money but hey-ho! Looking to some UK breaks later on - I might even get to wear these ->

hee hee

[KATB]

Can't believe Florida has been and gone now and we went without you

Really hoping you can get some nice UK breaks soon

xxx

[J_T]

Ray has had a cracking fortnight following cycle 4. Today Cycle 5, all good.

We now have the Creon 10000 units with the instruction to take one, 3 times a day! Fortunately we have the advice of Jeni and Dianne and plans are afoot to get higher dose tablets and with the better guidance to go with them we should get some results!

Hope everyone is doing well.

Julia x

[Cathy]

Great news Julia,

Ray's experience with the FOLFIRONOX seems similar to Jonathan's in that he managed later cycles better (please don't feel tempted to catapult him out of a high speed wheelchair tho - despite our dining out on the experience since). I guess there is just no way of telling how different people will react but such good news after Ray was so poorly.

Love to you both

Xxx

[KATB]

Haha, I love the wheelchair story!

He is doing so well and told me yesterday he felt the best he had in the past 4 months - I felt like I'd won the lottery just hearing that! I feel sure we are kicking the sorry ar*e of this disease and it's great!

K

x

[karen17]

Great to hear that Ray is doing well and hope that you do manage to get away at some point Julia although if we have good weather it will be just as lovely where you live. Hope you enjoyed your trip Kate. Must have been hard to go without mum and dad

Like Cathy I now have 12 days to lose a dress size before we go to Spain for 2 weeks. Have taken her tips on board though for maxi dress and spray tan. Once I'm flat on my lounger all will be well. Its just the getting into and out of that position in a flattering way! Looking forward to going as Bob is so well ( apart from tingling feet - why doesn't that go? ). Children ( I mean young adults coming too ) so lots of support should things go downhill.

Bee - Hope you manage to get away too. Perhaps as Julia said to stay in the UK for now

[J_T]

Lol Karen, all sounding good to go for your holiday too - FAB!

I might drag out my one and only maxi dress just as a general cover up! lol

x

[PCUK Nurse Jeni]

Hi Karen,

I hope you do enjoy the holiday!

Regarding the tingling feet, this can take some time to clear up - 6 months even. So, as long as it is not getting worse, then it should begin to ease off as the weeks without chemo go by. However, do make sure that he looks after his feet while out there, especially in the sun - don't get them burnt and always use a good moisturiser or after sun to hydrate them. Also, just encourage him to keep his flip flops on, or pool shoes, or whatever Bob prefers, as he needs to avoid injury to the feet (broken glass, little stones, bits of twigs etc...)

Sorry - I know this might be common sense, but when there is neuropathy, sometimes, folk don't feel that they have an injury! rocks in the sea are another culprit, as you don't realise you are injured until you come out!

Jeni

[Slewis7313]

I can confirm that walking bare foot on soft sand really puts a lot of pressure on the skin causing it to crack very easily. As nice as it can feel, it has quickly become a no-no for me. It is sandals and e45 for next week!

[PCUK Nurse Jeni]

Thanks for this Steve - very helpful.

Yes! Caution to be exercised for all! Better to be safe than have sore feet, as I know this can be a real problem.

Jeni.

[J_T]

Ray has been extremely well of late and we were therefore expecting good news from the mid way scan. Sadly that wasn't the case, his cancer has spread and folfirinox stopped. Ironically the tumour in the pancreas has stabilised and a nearby node reduced. We are exploring our options. Not the best of days.

Pleased to hear good news from the rest of my forum family.

Take care all.

Julia x

[Bee]

Julia,

Really sorry to hear that you have had bad news, there appears no rhyme nor reason with this disease. Do keep us posted, hope your options become clearer,

Thinking of you both, sending hugs

Bee xx

[MSH]

So sorry to hear that Julia. I hope that whatever option you go for gives a better response.

[Slewis7313]

Sorry to hear the results were not as hoped for. As Bee says, the twists and turns of this thing are so unpredictable. My next scan is due in a few weeks and as much as things are going well, there is always a little niggle in the back of my mind as to what they will find.

What other options are you considering?

Whatever they are, I certainly wish you good luck with them.

Steve

Xx

[PCUK Nurse Dianne]

Hi Julia,

So sorry to hear that Ray's results were disappointing, no doubt this is very difficult at present when things had been going so well for you. Please do feel free to email or phone if you need to chat, great as always that the 'forum family' are as ever supportive.

Thinking of you both,

Dianne

Support Team

[Bee]

Hi Julia,

Just wondered how you are both doing since your scan results, have been thinking about you a lot in the last couple of days. I hope your options are clearer and you are getting lots of support.

Bee xx

[Sueba]

Hi

Sorry to hear your news wasn't the best,I hope other options will help,it doesn't seem to make sense this horrible disease!!!

Love

Sue

Xx

[J_T]

Thanks all.

Bee: we are doing okay at the moment. Another appt tomorrow x

[Cathy]

Hi Julia

We've just got back from Greece and this was the first post I read.

What an absolute b****r for you all. I hope that at your appointment tomorrow they will come up with some good other options for you. I think what works for one won't necessarily work for all so everything crossed that the next option works a treat. I think the important thing is that as long as Ray stays well there will be more options available to try.

Obviously we are all thinking of you and looking forward to hearing a positive from tomorrow's meeting.

Loads of love as always

Cathy xx

[Cathy]

Hi Julia

How did your appointment go yesterday? I've been checking in to see if you had posted anything and thinking about you all.

xx

[J_T]

Hi Cathy

We had a good meeting yesterday, KATB came with us, she's our advocate lol!

We have a plan, a good one! There are some things to sort out before everything is confirmed so I don't want so say anything here until we have it confirmed from our onc. Sorry to be mysterious but I will post here as soon as I can. I can tell you Ray is not going on a clinical trial as they are all first line trials.

Feeling much more positive again

Thanks for asking about us and I want to hear all about your Greek holiday and hope Jonathan is still feeling well.

Julia x

[Cathy]

Hi Julia

Oh I'm soooo pleased. I'm very excited to hear what they have suggested for you and great that things sound more positive. I shall be looking out for your post.

Greece was fabulous. It went without a hitch. Well, there was one when our hire car conked out and we hadn't taken a phone to ring their breakdown number (doh!). Fortunately we weren't too far from our village so I left Jonathan in charge of our car and shopping and hiked off to the car hire shop. By the time a very overheated me and the car hire bloke got back to the conked out car, Jonathan was sitting in the shade under a tree happily singing his head off. It only took me 2 hours to recover (lol).

Other than that we were careful in the sun coz of his sun sensitivity due to the 5 FU so that wasn't a problem. The Picc line protector (which I'm going to write about on another thread) meant he was able to swim which he did most days. I guess the only issue he has is that due to muscle loss in his legs after the steroids he struggles walking up steep slopes but even that is improving. Other than that, lots of Mythos was consumed along side more healthy stuff, salads, yoghurt, fruit...

Jonathan had been apprehensive about going but had a wonderful time and was sooo glad we'd gone and that we'd had faith and not cancelled after he was diagnosed.

Next onc appointment is Monday to discuss what happens next. I'll let you know.

Have a great weekend

Xx

[karen17]

Hi everyone old and new,

Well we returned from 2 fantastic weeks in Spain with no mishaps I'm pleased to say. No burnt skin due to the prescribed factor 50 which myself and kids also pinched! Bob has enjoyed swimming every day, a trip to Valencia which wore me out more than him and lots of good food and wine. And more wine!

He has now been chemo free for around 4 weeks and we return to the oncologist for results of the MRI on Tuesday. He has been experiencing more pain since coming off chemo but only takes co-codamol x2 twice a day. He is expecting bad news because of this and became a bit low over the past few days. He does however look really well and has put all his weight back on. Just have to wait till Tuesday I guess.

Sorry to hear Julia that you did not have good news and wait with anticipation to hear what treatment Ray will be starting next. Keep your chin up.

Pleased to hear that Cathy and Jonathon have good holidays and would love to know how the picc line cover worked. Liked the story of the car breakdown!

Steve sounds like he has also had good holidays and hope Linda that you manage to get to New York. We were going to go there for my 50th last November but obviously life changed and not sure now whether we should or not. Look forward to hearing from Bee too.

Karen xxx

[Cathy]

Hola Karen.

You're back!! I'm so glad you had a great time. You've come back to some lovely weather as well.

Yes, I don't recommend hiring a car and forgetting your phone in 90C heat. I even more don't recommend hiking all the way to the car hire shop leaving said emergency telephone number with partner left behind in car meaning would have had to hike all the way back for it if the shop had been shut (thankfully it wasn't).

I've added a new thread about the picc line cover - I'm thinking of ordering another one in the next size up as it worked really well, the only down side was the struggle putting it on which meant that he didn't use it if he just wanted a quick dip. I think a bigger size would have been better. I know Bob hasn't a picc line at present but here is the link. http://forum.pancreaticcancer.org.uk/viewtopic.php?f=25&t=1099

I'm sorry to hear that Bob has been feeling down due to having some pain but looking well and weight gain are good signs aswell. Fingers crossed for your appointment on Wednesday. I know you will but let us know how you get on.

Cathy xx

[J_T]

Hi all!

Well sounds like some fab holidays have been had, great! We NEARLY got away to near Robin Hood's Bay for a long weekend in a posh cottage. We decided the expense was worth cos we knew the weather was going to be great, but wait! Oh no! Cloud over the east coast darn it. Still, we got out and about so not to worry.

Cathy, I don't envy that walk you had, hope you had plenty of water to take with you, but what a relief to get it sorted. The holiday sounds fab though, and yours Karen too. Sorry to hear Bob is a bit down. I think it must feel a bit strange while no treatment is being had.

Looks like we all have imminent meetings to see what's next. Don't forget to report back!

Ray continues to feel well, though he's never regained the stamina your chaps seem to enjoy. Hoping for good news from the onc on Wednesday!

Julia x