Results Day

Well Dad saw the oncologist this morning and it seems the type of tumour he has is a very common one although it is 7cm long and is spread all around the blood vessels which makes it inoperable and his tumour marker was on the higher end of the scale!!

It doesn't seem to have spread anywhere else though. He will be having a pre assessment on monday and will then start a 4 week cycle of chemotherapy (GemCap) and continue this and see what happens. Does anyone on here have any experience with GemCap?

Dad is actually looking really well at the moment albeit a bit thin but has a good colour to him and is still fairly active going for his walks everyday. The weight loss seems to have stopped since he's had the Creon, he sometimes gets pain at night which is worse when lying down so they have given him some tablets for the acid, hopefully this will help.

We're hoping to build him up a bit now ready for his treatment, He managed to eat a good plate of christmas dinner and cheese and biscuits, then a turkey sandwich later and more cheese and biscuits!! And a few glasses of wine!!

I hope you all had a peaceful Christmas...thinking of you all...

Morwenna

hi morwenna

i hope you at least feel a little less apprehensive now you know what your dealing with...the good news is that it's not spread to other parts of the body. I wouldn't worry about the high levels of tumour marker.

Did the oncologist offer gemcap with the aim of reduction and then surgery? if it isn't metastatic then this has to be the priority. if so then folfirinox may be the better option...did he mention that drug combination? it's more aggressive...the evidence so far shows greater anti-cancer activity (at least compared to gemcitabine alone), but it has worse side affects as it's more toxic. Given your father seems to be in good phsyical condition this is an option.

My step father started on gemcap but had to stop after the first 2 administrations because he reacted to it badly (he had a black out and a fall). He was in good physcial condition when he started.

ask the moderators for my email address and send me an email. I'll explain something else that could be done in parallel.

very important to keep him eating well so well done for that!

all the best

james

hi morwenna [and dad] so relieved for you, brian had Gemcap, Gemcitabene intravenously, and Capecitabene orally, brians tumour wrapped round SMV, operated for whipples but when able to view clearly, realised not an option, tumour has shrunk 2 or 3 times, about 50% now, 19 months chemo, tolerated well, no suggestion of 2nd op. bri is coming 64 in feb, if you think it would help you or dad, i feel sure bri would discuss his experiences with either of you, only our experience of course, may help thou, happy for our email to be given to you if you want, this is short but hope makes sense, have been in bed since xmas eve, orrible bug!!! loove laura xx

Thankyou James and Laura,

James I didn't go with Dad my brother went so not sure if other combinations were mentioned. It sounds as if even if treatment shrinks the tumour they still wouldn't be able to operate as the tumour has spread itself around a number of blood vessels but I suppose we will have to wait and see how the tumour responds to the treatment, I will get your e-mail address from the moderators as I would be interested to hear your other suggestions.

Laura I will also ask for your email address as it would be great to talk further. I do hope you are feeling better after that nasty bug and I hope you and bri managed to enjoy your Christmas together. Thinking of you

Morwenna

Hi Morwenna

If you have a look on the Clinical Trials board, then under SCALOP, you will see a post I put on in June last year when my husband had finished the GEMCAP part of his treatment. I hope it gives you a little more information.

Wishing you and your Dad well and keeping everything crossed that things go well.

much love

Deb

x

Thanks Deb, I will have a look at that now xx

Hello there,

I was wondering how your dad was doing and how you are.

Catherine xx

Hi Catherine

So lovely of you to ask, Thankyou xx

Dad is doing ok, he has got his first session of chemotherapy on Tuesday so we are all a little nervous but thankful that treatment is starting at last!! He has been having some pain which is worse on lying down, he is adamant it's indigestion but i'm not so sure, he has some strong painkillers now which seem to be doing the trick!!

I will keep you updated on how his chemo goes, hope you are ok...

Much love

Morwenna

Catherine how is your mum? has she started chemotherapy yet?

Morwenna x

Hello there,

I am pleased he is starting chemo on Tuesday, it makes a difference to be on with things doesn't it? My mum started hers last Tuesday and her 2nd session in planned for this Tuesday. She has been ok, a little tired and felt un well yesterday.

Sorry to hear he has been in pain, I think it is easy to put everything down to the PC. My mum has been sick a couple of times and it is hard to know whether it is due to the PC or the tail end of a virus (my daughter has also been a bit sicky in a very similar way). I think I tend to panic and think everything means something. Likewise with her being a little unwell following chemo she had been having a rhumertoid flare up alongside her virus so it could well have been that. I am trying to keep an open mind until after the first round.

Fingers crossed for your dad on Tuesday, I'll be thinking of you. I hope you are still feeding him well.

Catherine xxx

Hi Catherine

I'm so pleased to hear your mum has started her treatment, yes it is very easy to put every little ailment down to the PC especially when they were so healthy and rarely ill before!

I hope your mum is over her sickness now.

I made my special adapted recipe cupcakes for Dad yesterday, full of good stuff and he really likes them so thats good, and I had him up to mine today and cooked him roast beef and all the trimmings which he gobbled up!!! I told him i'd make him a lasagne this week too.

Will let you know how Tuesday goes and will be thinking of you and your mum

Morwenna x

Hi Morwenna

Hoping that tomorrow's chemo goes to plan and that your Dad feels OK. Wonderful to hear that he is eating well, all good for building up some strength and also good for the morale! Keep us posted, won't you?

love

Deb

x

Hi All

Well Dad had his first chemo session yesterday which all went well, he also has a tablet form which he will now take at home daily. No side effects as yet although when I popped in on him earlier he was having a little nap which is quite unlike him but he had been doing quite a few odd jobs round the house so maybe he just overdid it a bit!

I'm so relieved that treatment has finally started, as before I was just imagining the tumour getting bigger and bigger and now I feel like we're blasting the sucker!!

So fingers crossed that he responds well to the chemotherapy, thankyou all for your ongoing support

Big hugs and positive thoughts to you all

Morwenna

Hi Morwenna

So glad the chemo went OK. I assume your Dad went ahead with the Gemcap regime? The tablet form of chemo will be the "Cap" bit of GEMCAP - Capecitabine, the "Gem" being Gemcitabine, the intraveneous chemo. The main thing he will notice is the fatigue so it doesn't surprise me that he needed a little nap - this may become a regular habit - all good - rest is a wonderful medicine for a body busy dealing with lots of nonsense - encourage it!

love

Deb

x

hello morwenna, was wondering about you and your dad, so pleased it went ok for him, treatment centre is very good isnt it, staff wonderful,so helpful? Well at least i hope you found so as well, i cant speak highly enough of them all, did you get seen on time?

can u get bloods done before you gofor chemo, at your drs? hope so cos really saves time.

perhaps you could forwarn dad that he will get tired/sleepy, and it will probably get worse, poison going into him, bound to get some reaction.

but if tiredness is as bad as it gets on a daily basis, thats not too bad, is it?

we have learnt to plan our days around the fatigue, if we are out later in evening then bri doesnt do much during the day, and vice versa, as long as he doesnt stress about it, cos he cant change it, bri does have high energy drinks, n eats loads of choccies!!!! but doesnt always keep him awake, ten he comes to bed at 2.30am, i think he believes hes a teenager again!! [ well a recycled one anyway] so then im kn------d and we both sleep the next day, oh well, its a coping mechanism.

really really pleased that treatment has started, will say again that you can have my email and hope jeni will pass it on, bri wud be happy to talk to your dad if he wud like that, or be helpful to him? love n hugs laura xxx

Hi Morwenna,

I am so pleased that the chemo went well and your dad doesn't seem to be having any really nasty side effects. I'm sending negative thoughts to that tumor - get it blasted the damn thing. I wanted to make a model of my mums and shave bits off after every session, for some reason she didn't think it was a good idea.

Lots of love Catherine x

Hi Deb

Yeah Dad is having Gemcap so has the tablets to take at home. I saw him earlier (took him a homemade lasagne) and he said he's feeling ok today. He was about to put some new seat covers in the car!!

Laura I didn't go with Dad on Tuesday but i'm taking him the next 2 times. His appointment was at 3pm and he didn't get to go in until 4:30!!!! He said it was really busy and they didn't have a chair for him, but the treatment went well and he said he didn't feel a thing.

I'm sure Dad would love to talk to Bri but he doesn't use the computer much so I may need to show him how to email! I have got you're email address so I will speak to Dad next time I see him.

Although it may be a few days as my eldest son is home poorly with a nasty tummy bug so i've told Dad to steer clear.

Much love to you all

Morwenna x

hi morwenna, delighted that dad was good after chemo, probably will get tired/lethargic at some point, cant remember when brian first noticed it, it is a while ago now, memory not as good as i like to think it is!!! yes, sometimes we had to wait for a chair, specially if an earlier patient had problems with their treatment, equally if it was us [ or your dad] having a problem, we cud delay others, so all equal really.

glad you have got my email address, if dad would prefer to talk to brian am sure brian would be ok with that? just give him prior notice and approx time and he will be prepared, its the unexpected calls he finds difficult, so email when you can and i will send our tel no.

hope your son is soon ok, knocked me out over xmas, took me bout ten days to feel better!

love to all laura xxxx