A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: So far so good!

Postby EmmaR » Sat Apr 12, 2014 8:59 am

MSH wrote:
> Good to learn things are stable with you Steve. My oncologist described
> mine as relatively indolent which was good to hear. It does seem very much
> a lottery.

MSH indolent must have been a wonderful word to hear .
EmmaR

AnneK
Posts: 9
Joined: Sun Sep 01, 2013 6:42 pm

Re: So far so good!

Postby AnneK » Sat Apr 12, 2014 12:28 pm

So good to hear the results of your scan Steve. Your story is such an inspiration. So glad that things are not too bad for you.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Thu Apr 17, 2014 2:28 pm

'Easy ride' he said, which may have been viewed as tempting providence. Well today I saw my Oncologist who confirmed my previous worrying tumour marker of 500+ is now 1400! It is obviously coming back to life and something needs to be done. I am to go back on chemo in 3 weeks and the recommendation from my Oncologist is Folfirinox, though we did discuss Abraxane and she is happy to go down that route (privately funded) if I insist. As I am physically so well at the moment, the consensus is that The old Furry Fox will be of greater value to me at this point in my illness. I am having a PICC installed in 3 weeks during which time I can review the drug option. It's all a bit new for the Hospital as they have not really had a Pancreatic Cancer patient where the disease is only locally advanced. I am obviously not particularly looking forward to the next round of treatment, but hey.....it could be a lot worse!

Steve
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EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: So far so good!

Postby EmmaR » Thu Apr 17, 2014 8:04 pm

Steve just put your faith in what your Oncologist as suggested and hope the old Furry Fox will race all over it ...

All my Best Wishes coming your way .
Emma x

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: So far so good!

Postby belgrade » Thu Apr 17, 2014 9:56 pm

Sorry to hear this Steve but hopefully more treatment can keep it in check. Stay well.

Hilary x

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: So far so good!

Postby Bee » Thu Apr 17, 2014 10:01 pm

Hi Steve,

Sorry to hear the little blighter is as you say coming back to life. Fingers crossed you can nip it in the bud and it sounds like you have a plan in place. Although it's a different regime you managed the treatment really well last time round , fingers crossed that is the same pattern you will follow this time.
Sending lots of good wishes, keep up the positivity and my thoughts to your wife and family too !

Bee xx

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: So far so good!

Postby MSH » Thu Apr 17, 2014 11:06 pm

Let's hope you respond at least as well as last time.

My best wishes that you do.

Mark

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: So far so good!

Postby sandraW » Thu Apr 17, 2014 11:29 pm

Hi Steve, my husband had 6 of a course of 12 5 FU, but his tumour markers rose from 246 after his operation, to 1,000 then to 1,990. they swapped him to Folfirinox , and after 4 treatments his markers are down to 1,054, he has his 6th treatment right after Easter, and although he has been and still is very tired, his other side effects have not been too bad, slight thinning of his hair, he didn't have too much anyway, no sickness or diarrhea, mouth not too sore, suffers mainly with tingly fingers when in, or touching anything cold. In fact because his blood sugar had been high they stopped the steroid
tablets he was given for 3 days after treatment, and then last session didn't even give
him the steroid intravenously before his treatment starts, so lets hope you are one of
the lucky ones take care sandrax

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Fri Apr 18, 2014 5:07 am

Thanks for the kind words of support which are really are a great 'pick me up'. Whilst not totally unexpected, it is all a bit of a shock to the system after 10 months without chemo and no real issues during that time. We were going to Cyprus on 19th May for a business/pleasure trip, but that has now been knocked on the head. We will however try and fit a short trip to somewhere in before treatment gets going. Bring on the Fox!

Thanks again all

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

Re: So far so good!

Postby Cathy » Fri Apr 18, 2014 5:18 pm

Hi Steve

I'm sorry to hear that the blighter is waking up a little. Ten months without chemo is great though and there isn't any reason why the folfironox won't zap the beggar.

You'll have read loads of stuff on this forum about Picc lines and side effects of folfironox so I won't repeat them again but I would definitely recommend getting someone (your wife?) to learn how to flush the line and disconnect the chemo bottle. As with us, when Jonathan felt so well, it gave us a huge amount of freedom.. The places we went to with a bottle of saline and a syringe!!

Very best of luck

Cathy xx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Fri Apr 18, 2014 10:57 pm

Thanks Cathy, Margaret found your suggestions very useful and will ensure she gets some training when the line is fitted.

Hope you are doing OK yourself

Steve
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J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: So far so good!

Postby J_T » Sat Apr 19, 2014 10:39 am

Hi Steve, I can only echo all the other messages of support. The 'Fox' is not to be tangled with and will escort your invader to the exit I'm sure! Don your shiniest armour and let battle commence!

Julia x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Sat Apr 19, 2014 10:48 am

Thanks again for the great support. A bit of good news as I have managed to rebook the Cyprus trip for 30th April so we can get away before the treatment begins.

Steve
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sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: So far so good!

Postby sandraW » Sat Apr 19, 2014 12:23 pm

Thats great news about the holiday Steve, funny how different we all are, Cathy said get your wife to learn how to disconnect the pump/line flush, which I was quite happy to do, the highlight of my day is giving him his fragmin injection lol. But Trevor found going to the hospital treatment room to get his done was just a bit of support, as we get absolutely none from our GP practice. There have only been 2 occasions when he has been unwell, but the doctors where there in 5 minutes extra bloods taken and antibiotics/fragmin given immediately which meant he was able to have his next treatment on time. I suppose it depends on how far you have to travel for us its only a half hour journey, and we have good friends that live nearby so we usually visit them whilst we are there. Hope you enjoy your holiday, take care sandrax

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: So far so good!

Postby Slewis7313 » Sat Apr 19, 2014 12:37 pm

Thanks Sandra. Of the many factors in my favour, one is that I live 5 minutes away from the Hospital and also have Maggies there. It certainly makes things easier as so many people I meet travel 1- 2 hours or even more for treatment.

Steve
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