Folfirinox experiences please

[Didge]

OK, new thread. Partner had scan results which show 2 tumours in the liver. His chest pain is unexplained as there appears to be no recurrence at the original site although I think it's suspicious. He has opted for folfirinox which I am reticent about because he was unable to tolerate gemcitabine although I know it can be different with another drug. Please could any of you who have experience of folfirinox, either yourselves, or partner/relative etc. give me a brief rundown of what stage your cancer was at, how long you were or have been on it and how much 'nursing' is needed for the patient. He is going to have a port. We did ask about 'how long' for folfirinox PC sufferers with mets and were told but when I asked how long with no chemo there weren't any figures, presumably because relatively young (in 40s) and healthy people who are deemed fit enough don't turn it down! But this is not my way, although it is obviously not my choice. My late husband turned down non-curative chemo and we spent his last year doing our own thing which was the right choice for him I am sure. So really struggling with this 'throw everything at it even if it won't save me' approach!

Love to all fellow nightmarees!

Didge x

[jay]

so sorry to hear your news didge,

Our surgeon told my husband you are an individual and we have no idea how you will react or respond to the chemo,

massive massive hug,

x

[SueH]

Hi Didge

My husband had 22 cycles of Folfirinox. He had previously had the wipple then gem but it came back after a year and a half. The first two were tough but once the sickness was sorted he had a good quality of life. We went on holiday twice and he even built a large new patio and pond. He did feel rough for the first 3 days after treatment but by day four we were back to his daily 3 mile walk. He was even managing to swim a mile 3 days a week. We knew it was not a cure, as he had liver and peritoneum mets. However it did give us another precious 18 months together.

My husband was 42 when he was first diagnosed I cannot imagine how hard it is for you to go through this a second time. life is truly not fair.

Wishing you both all of the best Sue

[Annie14]

So sorry to hear about your husband! My husband is 37 and was diagnosed in November 2013. He has had 12 folfirinox treatments and tolerated them well. Tired the first four days but then back at work / playing golf. He doesn't have quite the same energy levels but life is very normal out with those four days. He had some nerve damage in tips of fingers and still gets a dodgy tummy now and again but he certainly had no problems carrying on with this treatment asking as he can

[nikkis]

Dear Didge,

Life is so unfair that you are going through this having been there once already. Paul found folfirinox really tough, I think it is especially hard when you have had surgery. He started it about 6 weeks after the surgery and spent a fair bit of time in hospital, as he was very sick. I read him your post and he feels trying anything is worth it, he would prefer to be here feeling rubbish at times than not here! As others have said every chemo effects people differently. I can understand where you are coming from with your previous experience, you have to do what you feel is best for you both. Paul has had a Port for his chemo, and they are great.

Take care,

Nikki

[Didge]

Latest is that he has said he's not having it but that could change again. Trouble is he wasn't able to withstand gemcitabine so foresees that he won't be able to take this much stronger drug - he was in and out of hospital with infections etc before and doesn't see the point of having possibly longer if he is so unwell all the time and the likelihood of having to stop anyway. Thanks for your replies - very helpful to know of others' experiences.

[Slewis7313]

It is such a difficult call to make Didge, especially as we all seem to react in sometimes differing ways. Personally, I have found Folfirinox more difficult to handle, but that said I had an easy ride with GemCap which I was on for four months last year. I have compared bloods between the two and Folfirinox really does hit them much harder than Gemcitibine. I am shortly going to start cycle 7 of Folfirinox and although I have suffered some sicknes and Neuropathy, I have not at any point considered walking away from it as overall the pro's definitely outweigh the con's for me (at this time). I am strugglng a bit with keeping weight on, but that is in part due to sickness and my ongoing diahroea (from surgery nerve damage). I assume as time marches on that the positive balance between the pro's and con's will change and I/we will have to review the way forward.

I have just reread my words above and they probably don't help a lot with any decisions you need to make regarding Folfirinox. I do however as always wish you all the best and know you will come to the decision which is right for you and yours.

Oh and I fully agree that a port / PICC line is by far the best means of treatment. The procedure to have mine fitted was fine (I had a local anesthetic, which I hardly felt) and being able to simply 'plug in' on treatment days is a massive improvement on the alternative 'hunt the vein' game which we have all had to suffer at some point.

Damn this thing!

Steve

X

[sandraW]

Hi Didge, what can I say, just to let you know I am thinking of you both, it is such a difficult decision to make. I know when Trevor finished his last folfirinox, he said I hope I never have to have that again, but then when we spoke to our consultant and he inferred he would be back on treatment sooner rather than later, he didn't seem too worried. although he was very disappointed.

Steve puts it so well,as he usually does, its your partners decision, and you never know he might cope with it better than you think, but it is so hard take care sandrax xx

[nikkis]

Dear Didge,

It's good that your partner has been given the options to choose how to go forward, being in control is so important with this blimming thing.

Thinking of you both, and hoping that you get to spend lots of time together doing the things you like doing, whatever he decides to do.

Take care,

Nikki

[Cathy]

Hi Didge

My partner had folfironox after being diagnosed with stage 4 PC.. Multiple mets on liver and peritoneum. He was "well", overweight really, good appetite etc. He had 8 cycles of folfironox with adjustments made to the irinotecan and oxalyplatin over that time. He didn't need much caring other than towards the 7th and 8th cycles which did knock him for 6 for a few days. The chemo stabilised and reduced the tumours for a while. I believe, in fact, that they bought us a summer although he did have side effects of the chemo after the cycles finished, largely fatigue (which improved). It was the neuropathy in his fingers and feet which he complained of most.

Cathy xxx

[RLF]

Hi Didge,

Not what I wanted to see when I decided to come have a nosey at how everyone was doing. Gutted for you both!

I'm a little concerned at the fact you both seem to be giving up the fight, though I understand that's his decision to make. Like your partner, Carl was very ill on gemcitibine, so folfirinox was a worry for us both too. He didn't have a great time on it at all, but the Dr didn't use his common sense and reduce the dosage right from the start of the treatment which on hindsight he wished he had. My adivce would be, if he decided to give it a try, to discuss a low dose for the first one, 40% reduction is the most they will drop it, but that's the % carl ran at over the 4months he had it. If you know he will be sick then ask for Emend or a sickness driver for 3-4 days after the treatment. Get it all planned out for worst case scenario, that will make it a little easier to deal with.

I've read so much online about pancreatic cancer, some amazing results of mets completely resolving through folfirinox treatment alone. That doesn't happen often, but I spoke to a lady off here on the phone a month or so ago whos mums mets had disappeared from scans from the chemo.

Everyone has their choices to make and yes it's his at the end of the day, BUT if it's fear of being ill then reduce the dose, be prepared with medication and maybe give it a try then decide if it's just too much after one or 2? They seem to get a little easier as you go along the course though.

I hope you're both as ok as you can be.

Rob

x

[Didge]

Thanks for all your replies. Rob, I agree, and we have just discussed that he ought to start at a lower dose. His hospital want to start at full strength but that is madness as he'll just be hospitalised with infections straight away or with kidney overload. Still undecided as to what to do but having the port in tomorrow. As for giving up, I wanted him to try heavy duty dietary therapies when he was in remission but he couldn't give up the sweets and the takeaways! He's planning to do some alternative stuff now but not dietary, although that has improved a bit now. we did do herbal though but it's not enough to tinker with a bit of that or a bit of this, except perhaps to boost general well being which I think it has as he feels pretty well apart from the pain and has put on 5k in the last few weeks. So not given up. Just so difficult to live with other people's decisions sometimes!

[washingtonmike]

Hi Didge: Blessings on you and yours.

I don't have as much experience with Folfirinox as others, having only 5 treatments. It did knock out my single met, however. We followed with Gemzar/Abraxane for 12/13 treatments after that. While on the Folfirinox we had to remove the Iriniotecan because of very troublesome side effect so I guess one would name the treatment Folfox(?).

The Folfox, even though just a few treatments was hard to tolerate. It is, however, the gold standard over here and the first line of treatment for those who can sustain it. My best thoughts to you both. Cheers, Mike

[Didge]

On second dose and no side effects so far although I know they can be cumulative. PET scan showed another liver met but nothing anywhere else in the body so we are grateful for that.

[nikkis]

Glad to hear he is coping well so far Didge.

[Didge]

Ok, result of 3 month scan in and one tumour has disappeared and the other reduced. tumour level markers continue to come down. Minimal side effects from the treatment although he was sick for the first time yesterday on dose 7. He continues to put on weight. I guess we can't ask better than that, can we? Love to all in this surreal world.

[RLF]

Wow didge , no you can't ask for much more than that at this stage! That's brilliant, glad he's not having the side effects as badly. Bet he and you are glad that he gave it a try! X

[nikkis]

Wow,wow,wow! That is fantastic news, we are so pleased for you.

Lots of love,

Nikki

[Slewis7313]

Amazing news. Gives encouragement to all of us on 'The Fox'. Long may it continue!

Steve

X

[sandraW]

That's really great news Didge, good that he's putting on weight too, Trevor's fluctuates, dropping then coming back up over the 2 weeks but never quite making it by a pound or two. He too was sick and had dreadful stomach cramps, on round 2 of this 2nd cycle, but with a little bit of steroid and double atropine he has been ok since, take care sandrax

[J_T]

Really excellent news Didge, long may it continue!

Julia x

[jay]

fantastic news Didge,

xxxx

[Didge]

bf was unable to have chemo last week because of low platelets. This week the same so been put off for another week. V worried that tumours will now start to grow again. Fingers crossed for getting it next week. Any advice, experience?

[nikkis]

Sorry no experience of this Didge, as Paul always has very high platelets (not great either as this contributes to his tendency to clot!).

Really hope it goes ahead next week, so you can relax a bit again,

Love,

Nikki

[jay]

Hi Didge,hope your bfs platelets have risen,

Jayne

x