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Annie14
Posts: 60
Joined: Tue Dec 03, 2013 5:19 pm

Re: Husband just diagnosed at 36

Postby Annie14 » Tue Jul 22, 2014 7:53 pm

Hi everyone, thank you for the your kind replies. It is a funny old disease when you are celebrating still being terminally ill but at diagnosis I never dreamt he would still be this healthy 9months on. Really interesting about the treatment at home - Jim quite enjoys his trips to the cancer centre in Bushey and the nurses always give him lots of attention so what man wouldn't like that but he may prefer treatment at home if the disease progresses. Do they take the bloods at home the day before or do you need to visit hospital?

Annie14
Posts: 60
Joined: Tue Dec 03, 2013 5:19 pm

Re: Husband just diagnosed at 36

Postby Annie14 » Tue Jul 22, 2014 7:54 pm

Nikki - 13 folfirinox treatments is an amazing achievement - I don't think I could have managed one myself! Xxxxx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Husband just diagnosed at 36

Postby nikkis » Tue Jul 22, 2014 9:30 pm

Hi Fiona,
The bloods are taken the day before, and the nurses tell me they sometimes even go to people's work to do them. We have recently found out that Paul can also have the bloods done the day before at home when he is having his chemo at the clinic, which will save a lot of time. It's something to bear in mind for the future, if Jim gets fed up with going in. I know what you mean about celebrating when it is still terminal. As I posted yesterday Paul has had another scan and there has been no changes, and we were very pleased, we started off hoping Paul would be cancer free, but you quickly lower your expectations don't you!The longer you can hold the bugger off the better, and it is so great that Jim feels so well.
Take care,
Nikki

Birchen
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: Husband just diagnosed at 36

Postby Birchen » Tue Jul 22, 2014 9:37 pm

Hello to you all. Yes the Healthcare at Home team phoned every Monday evening and came and took bloods on Tuesday mornings (probably because Terry always played golf at 10 on Tuesdays) the chemo then following on Wednesdays. Terry was on Gemcitabine/Capecitabine and I can only say that all the nurses that came to us were friendly, helpful and professional and I really can't thank them enough for making this time easier for us all. I hope that you get all the help that you need. take care Lyn

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Husband just diagnosed at 36

Postby Cathy » Wed Jul 23, 2014 1:22 am

Hi Fiona

What a trooper!! It's a tough regime so maybe the Oncologist might suggest a little break and, from our experience, made a big difference.

It sounds like Jim is doing great. Fingers crossed that continues. As we say, keep on keeping on

Cathy xx

Annie14
Posts: 60
Joined: Tue Dec 03, 2013 5:19 pm

Re: Husband just diagnosed at 36

Postby Annie14 » Wed Nov 05, 2014 7:08 pm

Hello,

It's been awhile since I updated but mostly because nothing has changed. Jim is still working and playing a lot of golf. We are also just back from a great holiday in Lanzarote. It's now been almost exactly a year since diagnosis and Jim has had 19 Folfirinox treatments. Today he received his latest scan results and its show that the tumour has grown slightly and there are new Liver spots to add to the previous ones. He had lost a bit of weight recently so we were probably expecting something like that to be the case.

So given the Folfirinox has runs its course he is now being moved onto Gemcitabine and Abraxane. If anyone
has any experiences we'd be grateful. It's going to be funny getting used to a new system. We are so
Used to our fortnightly trips to the Cancer centre. Hopefully this treatment works aswel as Folfirinox has done for us.

Hope you are all well and enjoying bonfire night. X

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Husband just diagnosed at 36

Postby nikkis » Wed Nov 05, 2014 7:55 pm

Hi Fiona,
Glad to hear you had a lovely holiday and Jim has been doing so well, hopefully the changes are a minor set back, but I can imagine how stressed you have felt. Paul had 11 folfirinox and then changed to Gem/ abraxane as he was so unwell with it, but he had started this post surgery. He has been on the new regime since January and no changes on scans to date, and with the odd tweak (see my post) has managed quite well. His consultant agreed to fortnightly chemo as we couldn't face the weekly regime and this has worked well for us. The only thing that has been worse on the gem/abraxane is the neuropathy but he takes amitriptyline which has helped with this.
Hope that helps, and Jim is ok,

Best wishes,
Nikki

Annie14
Posts: 60
Joined: Tue Dec 03, 2013 5:19 pm

Re: Husband just diagnosed at 36

Postby Annie14 » Wed Nov 05, 2014 8:53 pm

Aw brilliant thanks Nikki. I'm pleased it's been doing doing the job for your husband. Jim has literally just got home and said he was going to read your thread as he had seen it on here previously. It's funny that we were so fixated on Folfirinox that we hadn't spent much time reading up about Abraxane so thank you very much from both of us for taking the time to post your experiences as it will be so useful for us when we've just been hit with it. Both feeling very positive though and glad we know early that the folfirinox has stopped working so he can start something else when he is still fit and strong.

Thanks again from both of us! X

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Husband just diagnosed at 36

Postby nikkis » Wed Nov 05, 2014 10:09 pm

Glad to help Fiona and Jim, and it is always great to hear your positivity! Nikki

sandraW
Posts: 1044
Joined: Thu Oct 31, 2013 5:38 pm

Re: Husband just diagnosed at 36

Postby sandraW » Thu Nov 06, 2014 12:39 pm

Hi Fiona, good to hear that Jim has been feeling so well, pesky disease just won't let go will it. Just lets hope the Gem/Abraxane continues doing the same job for you both, take care sandrax

Annie14
Posts: 60
Joined: Tue Dec 03, 2013 5:19 pm

Re: Husband just diagnosed at 36

Postby Annie14 » Fri Nov 07, 2014 4:34 pm

Thank you both! We went for a lovely posh lunch today as a treat after the rubbish scan results. I forced Jim to have a starter and a main course pretending it was purely because he needs to put weight on when in reality I was just been greedy and wanting it myself :-)

Have a nice weekend x

sandraW
Posts: 1044
Joined: Thu Oct 31, 2013 5:38 pm

Re: Husband just diagnosed at 36

Postby sandraW » Fri Nov 07, 2014 5:43 pm

What couldn't you manage a pudding! you should have forced it down, you need to keep your strength up after all, lol take care sandrax

Annie14
Posts: 60
Joined: Tue Dec 03, 2013 5:19 pm

Re: Husband just diagnosed at 36

Postby Annie14 » Fri Nov 07, 2014 8:09 pm

Haha - I don't have a sweet tooth so I'll filled up on wine instead!
Poor Jim had to drive back - I'm not making a very good carer am I :-)

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: Husband just diagnosed at 36

Postby SusannaUK » Sun Nov 09, 2014 12:40 pm

Hi Fiona,

It is good to hear that Jim has been feeling well and he is able to continue his normal life. I hope that the Gem/Abraxane will do a good job and he can continue to feel well.

Take care,
Susanna x

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

Re: Husband just diagnosed at 36

Postby Ant11 » Tue Nov 18, 2014 3:15 pm

Hi Fiona

We have been following your story closely as James and Tracy were diagnosed more or less at the same time last year and have been on exactly the same treatment. I see James has now had 19, Tracy had number 22 last week. Can I ask a question please? Has James's CA19-9 levels changed or was it just the CT scan results that confirmed it was no longer having the desired effect? Wishing you all luck with the new regime.......