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

Re: Folfirinox- seems to be working!

Postby nikkis » Thu Feb 13, 2014 1:52 pm

Hi All,
Yesterday Paul had a scan, following 2 Gemcitabine with Abraxane. Scan looked good, there has defiantly been shrinkage this time (the oncologist doesn't dare be anything than honest with us after what has happened in the past!). No longer thinking they will be able to remove the rest of the tumour, but just hoping they can keep it stable.

The downside is that Paul has had terrible peripheral neuropathy, unlike anything he has suffered in the past, resulting in him being very unsteady on his feet and unable to open any packets etc.. So this time he just had the Gemcitabine, and will have a reduced dose of Abraxane in 2 weeks. It also made him feel nauseous for a week. Paul was changed from Folfirinox at Christmas as he was so unwell, with terrible pain and sickness and the feeling was that this was no longer working. Since then the pain is minimal again, and he hadn't been sick for over a week, although he was sick this morning, just hoping that was a small blip. Since stopping the Folfirinox he has also stopped having diarrhoea.

So has the Abraxane made the difference? We don't know, we still think that the surgery last year causes issues that may just come and go. We are aware though that we are lucky to be able to give Abraxane a go, as the insurance has covered it. It does sound hopeful that NICE will approve it's use soon, so that everyone has this as an option.

Best wishes all,
Nikki

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

Re: Folfirinox- seems to be working!

Postby Cathy » Thu Feb 13, 2014 7:58 pm

Hi Nikki

Thank you for your update. I think about you and Paul a lot.

I looked into Abraxane for Jonathan a while back and spotted it caused neuropathy. He had terrible neuropathy from the folfironox so I was never sure that this would be a good option for him. The last chemo cycle they dropped oxalyplatin entirely because of that. It sounds like hopefully it's done the trick for Paul though which is great news and hope for anyone new who might soon be offered Abraxane on the NHS.

Keep on keeping on Nikki and Paul

Cathy xx

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

Re: Folfirinox- seems to be working!

Postby nikkis » Thu Feb 13, 2014 9:17 pm

Thank-you lovely Cathy,
I think of you too! From our experience it sounds like Abraxane would have been a nightmare for Jonathan, so I am sure you made the right decision there,

Nikki

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

Re: Folfirinox- seems to be working!

Postby Bee » Thu Feb 13, 2014 10:32 pm

Hi Nikki,

Like Cathy, I too think of you a lot aswell, so it's good to have an update.
Glad the scan results are so positive but not so good about the neuropathy, must be horrid for everyone. Good luck with the next treatment, keep plodding on.

Take care, all of you

Bee xx

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

Re: Folfirinox- seems to be working!

Postby nikkis » Fri Feb 14, 2014 10:14 am

Cheers Bee,
Hope you and your children are ok.

Paul has been sick again today and feels really rough, despite only having had Gemcitabine, really hoping he will feel better soon as we would really like to have more good days before the next session. Thinking it is a cumulative thing,as a result of all the past chemo and surgery, anything now knocks him down.

Nikki

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Folfirinox- seems to be working!

Postby cestrian » Fri Feb 14, 2014 3:46 pm

Hi Nikki

Give my best wishes to Paul, I'm so sorry he is still experiencing such a problem with coping with his chemo. I'm moving onto new ground myself next week as the Mets in my liver and lung have increased since November so I'm switching from Gemcitabine to combo of Oxaliplatin and 5 FU/Folinic Acid. Apparently needs PICC line for delivery so I'm in early on Wednesday for that to be inserted then first dose later in the morning. I've been remarkably free of any side effects from Gemcap so will have to see how I react to the new drugs - there seems to be plenty of experience on the forum so I'll be back!! Been getting great advice and support from Dianne as I've had a few problems since Chistmas, our specialist nurses on here are really superb so do use their expertise!!

Love and Peace

Mike

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: Folfirinox- seems to be working!

Postby PCUK Nurse Jeni » Fri Feb 14, 2014 4:10 pm

Aah, thank you Mike. Sorry to hear about the increase in mets.

Wishing you all the best for your forthcoming line insertion, and Folfox chemo.

You will cope with your usual gusto, I am sure.

Love and peace to yourself.

Kind regards,

Jeni.

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

Re: Folfirinox- seems to be working!

Postby nikkis » Fri Feb 14, 2014 4:34 pm

Thanks Mike,
Hope it goes well on Wednesday, you are such a strong man, I am sure you tackle the new regime head on and win!

Nikki

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

Re: Folfirinox- seems to be working!

Postby Slewis7313 » Fri Feb 14, 2014 6:07 pm

Sorry to here about the mets Mike, but as ever I am sure you will take the revised treatment in your stride. They must obviously feel that you are fit enough to move from Gemcitibine to the old Furry Fox. Good luck next week.

Take care

Steve
X

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

Re: Folfirinox- seems to be working!

Postby Cathy » Fri Feb 14, 2014 6:59 pm

Oh Mike

I am sorry to hear of the increase in your mets. You sound as if you are coping with your usual aplomb however.

Don't worry about the Picc line (if you even were). You can get someone to flush it for you, doesn't need to be a nurse. I used to do Jonathan's. You can even do it yourself but it can be a bit of a fiddle. If you do a search on this forum for "Dry Pro" I did an update on a Picc line protector that you can use to go swimming (if you were so inclined in this weather) or showering etc.

Very best of luck with your new regime and I'll be looking out for your posts. You have been such a great support to others.

Cathy xx
Last edited by Cathy on Sat Feb 15, 2014 1:29 pm, edited 1 time in total.

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

Re: Folfirinox- seems to be working!

Postby EmmaR » Fri Feb 14, 2014 8:30 pm

Nikki & Paul sending you wishes that you both can be strong and can carry on with positivity in this fight .

Mike and the same wishes for you too .

Love Emma x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Folfirinox- seems to be working!

Postby InfoForMum » Sat Feb 15, 2014 1:29 am

Nikki, lovely lady, so sorry your man is feeling horrid still. Those four words "we think it's because..." are horrid aren't they. You know from looking after me on my post I've had a taster of that recently. No damn certainties appart from the fact you're an utter rock and are helping him keep up the fight. Fingers, toes, legs and eyes crossed that this is indeed a blip and things pick up.

I'm back in the capital on the 24th Feb just in case you two have reason to be there.

Mike, s'not fair. Don't want you to have hard things to cope with. All the positive energy you share with so many others will hopefully batter those mets back to size with the help of furryfox (speaking of which paul hasn't been on lately has he). Take good care of yourself m'dear.

Love and hugs

Sarah
XXX

Lots of hugs

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Folfirinox- seems to be working!

Postby cestrian » Sat Feb 15, 2014 8:39 am

Thanks all, your support is so valuable and yes I will kick it's ass!! Greatly cheered on Thursday by my beloved Chester' s last minute winner! We are both fighting for survival so I will make sure that everything possible is done.

I should say that all things being equal I still feel very lucky to feel so relatively well and receiving such great care - roll on some better weather so I can get out more easily #couchpotato

Love and Peace

Mike

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Folfirinox- seems to be working!

Postby laura » Sun Feb 16, 2014 1:36 am

dear mike, sorry to read that those damned mets snuck back to cause you this blip.

how dare they, to someone so full of positive comments and advice.

my thoughts are with you and sending you strength and hugs, laura xxx


hello to everyone else no matter where you are in this fight against pc, try to be positive and strong, i know how difficult this can be.
good luck stay upbeat if possible and kick ass. love laura xxx

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

Re: Folfirinox- seems to be working!

Postby Bee » Sun Feb 16, 2014 8:18 am

Dear Mike,

Can only echo what the others have said, keep fighting it is such a sneaky disease.
I can't offer much about the new chemo regime you are starting as our experience was very brief. What I do know was that the cold sensitivity in Chris's fingers was immediate, so have your gloves to hand! By immediate I mean by the time he was walkin got the car after the first dose!
And the picc line, also very easy and like Cathy I did the line care myself. Good luck with all of it.

Nikki,
The three of us are ok, one day at a time philosophy continues, with huge support from friends, family, professionals, wine, chocolate, late night chats and face book messages!! Look after yourself.

Bee xx