Hello

Hi Andy, 

sorry to hear of your news. 
i would stay away from the internet as it all seems to be negative. 
what questions do you have? Maybe some of us can answer your questions.

thanks

chrissie 

Hi Chrissie, thanks for your reply.

I guess, any advice on dealing with the emotional side of things.

My wife and family are all a great support. I've approached the GP re antidepressants and sleeping tablets. And I'm having a chat with Macmillan next week about possible counselling.

I tend to find myself dwelling on all the negative aspects and my emotions are all over the place!

Any suggestions would be very welcome.

Regards

Andy

Hi Andy,

i have found the internet very negative so stayed away from it. No one seems to talk about the positive outcomes. 

Im sure the GP will help with antidepressants but were reluctant to give sleeping tablets to help my husband. 
i believe and have read about positive mental thinking especially with cancer diagnoses and being able to talk about your feelings openly instead of trying to think about what you say to friends and family encase you worry or upset them. 
I think the counselling will help a lot and you also have the hotline that you can call just to talk and this site. 

you are in a a difficult spot because you have not had your consultant apt, but hopefully after Tuesday you will know abit more and be able to put a plan in place. 

We are waiting for our first scan post 6 rounds of chemo, so this will be our first update since diagnoses. 
Im nervous but I’m positive because his CA-19- (cancer blood levels) have reduced from 1900 to 90 last week. It’s just a waiting game for us?

How are you feeling health wise? 
have you spoke to yoir CNS about Creon? Are you taking any?

Creon is one of the most important medicines in my opinion. 

regards

Chrissie 

Hi Chrissie,

Yes I'm taking Creon which seems effective.

I feel okay health wise and I'm trying to keep active. Walking everyday.

Fingers crossed for your results and the waiting I do find challenging.

Thank you for the advice.

Kind regards

Andy

No problem at all, 

glad your doing some walking, it defiantly helps to get out. Good to hear your in Creon, it’s defiantly made a difference to my husbands digestion of food.

here if you ever just want to chat.

Chrissie 

Thanks Chrissie, I'm sure I will take you up on that kind offer.

Andy

Hi Chrissie, I'm taking you up on your kind offer.

I hope your husband and you are doing okay?

I wanted to pick your brains.

So I start my Chemo(Folfirinox) on 15/2, for 6 cycles over 12 weeks. I have various booklets, had my preliminary conversation with Oncology, and will be having a face to face with them and conversations with Nurses. So an abundance of information.

But I wanted to ask your advice on coping with some of the side effects and challenges. I appreciate we all react differently. I think my main concerns suround; loss of appetite/trying to maintain healthy nutrition, avoiding infection and Neuropothy(not sure anything can mitigate this).

I'm starting to appreciate how much of a mental challenge this all is as well.

I appreciate any advice you can offer.

Best wishes

Andy

Hi Andy, 

Good to hear from you. glad to hear you are getting started on  the chemo.
How did you consultant meeting go? 

Which chemos are you going on? Just Folirinox? Gordon is in three different ones.  

So the main thing for Folfirinix is to keep warm. Make sure you where a hat, scarf or snood and gloves is a must when you are out and about. 

We were told no cold food or drinks and to stay away from the fridge and freezer. 
Things to think about are:- 

warming up your cutlery

brush your teeth with Luke warm water and turn taps on with a towel. 

I brought a heat pad which helped with the Neuropathy in my husbands hands and feet, he would sometimes get a horse voice so we would put the pad across this throat which really helped. 
If you do get a horse voice then drink a warm drink,  which seemed to sort it quickly.

They should give you some injections to maintain your immunity. Gordon was given them for days  8 -11 after his chemo. He has been around the kids with colds and things but seems to have been ok. 
I make sure visitors wash there hands or use antibacterial gel. 

Food wise Gordon is not great whilst doing his chemo( he has chemo for 3 days( one in hospital then a bottle at home for 2 days) he tends to graze on them days but I think it’s about playing around with foods you can tolerate. we mainly stick to plain dry foods during chemo. But you should get some anti sickness meds during and after your chemo. If they don’t work let them know early. Gordon started on one med and ended up on there different types of anti sicknesses.

Trying to get some veg in your diet, like greens as you don’t want your magnesium to drop, the drs don’t like that And can delay chemo if it’s too low. Gordon is terrible for veg so I make sure he gets some in for the 5 days leading up to them taking yours bloods. they should take bloods 2-3 days before each chemo session. 

I know this might be a weird one but I brought a decent size bucket from him for when he did felt sick.( hopefully you won’t be  too sick) he also had sweats so get a few flannels to help with that. 

Being honest sleep has been the best medicine for Gordon, when he feels unwell or in pain he sleeps. This seems to pick him up. So plenty of blankets and pillows for the living room if you don’t want to keep going upstairs to sleep. Gordon has two bed Pillows downstairs( one for sleeping on and one to cuddle up to( for the pains in his tummy but you may not have this). 

How are you getting in with the creon? How many are you in daily? 

Try and keep an eye on your weight, On your good days try to do the best you can with eating foods like red meat( Gordon loves mash with everything) it’s easy to digest and you can jazz it up with different things. oh and stay away from raw foods like sushi and  shell fish. Gordon hated this because he loves smoked salmon. 

I hope that’s not too much information for you. 

If you got any questions or I haven’t answered any of your questions drop me another line. 

Hugs

Chrissie 

Hi Andy, there’s some really great info from Chrissie there. I thought I would share my husband’s experience, it’s true everyone reacts differently. Folfirnox is made up of 3 drugs oxiplatin - which is the one that can cause the neopathy 5fU which is the one you also bring home in the pump and ironetecan. 
My hubby, Terry, started chemo on Thursday 12th jan and had his second on Thursday 26th jan. His stage 4 pancreatic cancer has spread to his liver lung and adrenal gland. His liver function blood results are not good so his oncologist has started him on 2/3 of the chemo drugs and not given him irontecan in the mix yet, as this drug really needs the liver to work effectively to metabolise the drug. 

He was feeling low and in pain before the first chemo so the docs gave him a boost of steroids which really helped and adjusted his morphine levels. when they saw him before the second chemo they told us they were quietly reassured as he sounded and felt so much better. We know the prognosis isn’t good but the quality of life is improving. 

He hasn’t had a problem with any real side effects from chemo so far. He’s been lucky not to feel the coldness and long May that continue. 
We have various nights away in local Cornish hotels planned over the coming weeks to make more memories and continue to enjoy every day we have left together. 

Big hugs x

They took Gordon off Oxiplatin last week as he was reacting to it, It’s his last round of chemo tomorrow as he embarks on his dual therapy of chemo( tablets) and Radiotherapy from the 20th Feb.. Good on you for booking some nights away. so weird as Gordon And I have just booked a four day trip away to Somerset( a four hour drive from London) but he is really looking forward to it and feels up to the travelling. He has come along way in 4 months as this could have never have happen back in Oct-Dec. He has started to feel a lot better. Hopefully that gives you some hope Andy… there is still lots of things to look forward to even if you are having a difficult with with PC. 
sending hugs to everyone xxx