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Gem-Abraxine or Folirinox can't make my mind up


CliveD
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Hi

I'm new to this forum, I'm 53 have had a whipples last May and the gem-cap until the end of the year. In April this year I had a scan that shows a tumour on my liver. The surgeon will not operate to remove the tumour although it's only 2.5cm, sounds like this is all very common with PC.


I have been lucky to get funding for Gem Abraxine as a first line treatment. For a second line if I don't tolerate it Folfox.

I have asked if I could have Folfirinox as a first line he said yes but if I don't tolerate it there is nothing else I could have. I asked if I could have the Folfirinox as a back up to Gem Abraxine but he said no.


So I just can't make my mind up what to do. Perhaps some of you out there could share some of your experience, side effect etc from the two treatments.

The oncologist has said I could have a second opinion from another Oncologist if I would like to. do you have any recommendation? I here Prof xx from the XX is quite good?


I'm quite fit at the moment swimming and hill walking. I had started running again until I found out about this new tumour. So I might cope better than some with the toxicity perhaps.


Clive

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Hi Clive,


Sorry to read you are here, but pleased you found us as hopefully you will get the support you need.


I saw your other post and was just going to tell you to make your own thread, as you will het better coverage, so to speak, but you have.


It is my dad with cancer unfortunately, he is having Gemcitabine and a Maestro trial drug/placebo. He gets on reasonably ok with it. 3 days afterwards, he loses appetite and feels weak, but he does push himself to eat. When do you start treatment? You will be in the hospital when you have, but chemo wards are very good and the staff are pretty good too. My dad has started taking a picnic with him, and the nurses always put the horse racing on for him. He generally has a long day, normally there 9 while 5. He also had spots on his liver, and with only 2 cycles, it has shrunk quite considerably, though no change on his pancreas.


Keep keeping fit for as long as you can, I believe it helps the body when you have weak days.


Leila x

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Hi Clive,

My husband, Trevor, had a sub-total pancreatectomy last September, they took away 2/3 rds of the tail end of his pancreas and his spleen, they also took 7 lymph nodes 2 of which had cancerous cells. He started Folfox in mid November and after 6 sessions changed to Folfirinox as his tumour markers had risen dramatically and a scan showed 2 tiny lesions on his liver. He finished his 6 Folfirinox about 4 weeks ago and we are waiting for the results of his scan tomorrow.

Our consultant, who's a professor, just suggested Folfirinox , he said you have to be fit for the regime, and Trevor has managed well, his bloods have been fantastic, and he has had every full treatment on time, whilst he was quite fit, certainly not as fit as you sound.

His main symptoms have been Very high blood sugars, which we controlled with insulin, Tiredness/fatigue worse on days 6/7, slight feeling of sickness on 1st cycle and slight case of diarrhea on cycles 4/5/6 this was stopped after one dose of Loperamide on each occasion. He only suffered the diarrhea as on cycle 4 they stopped the oral steroid,then on 5/6 they stopped the intravenous steroid as well due to his high blood sugar. The other symptoms tingly fingers for quite a few days especially when touching anything remotely cold,cold nose, had difficulty drinking cold drinks,again just for a couple of days and some hair loss, sore mouth for the first couple of treatments, and then just an odd day every cycle, so all in all it was very manageable. He also found his body felt as though it was racing whist he had the pump on. He certainly didn't enjoy it, but he was nowhere near as bad as we expected him to be.

As Steve has already explained, usually PIC line fitted then after a few days treatment 3 infusions, they give Trevor a flush then the steroid intravenously, the injection to stop stomach cramps, fluorouracil first over 90 minutes, then oxcaliplatin and irinotecan in tandem over 2 hours with flushes inbetween and after, he never had a bolus for the last 6 treatments, then the pump connected for 46 hours, although its usually empty before then, so it is usually a longish day but you will know your treatment room well already if you have had Gemcap.

We choose to go back to the unit for pump disconnect and the line flush inbetween treatments, as you get that bit more support and the couple of small problems Trevor had were sorted immediately, before they caused any real problem. Hope this helps, good luck in what you decide, and remember the forum is always here, take care sandrax

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I'm no expert but I don't understand why you can't follow Gem/Abraxane with Folfirinox. Maybe there are good reasons but maybe its just ££££s :(

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Hi and welcome to the forums,

As J_T says I have no idea why you have been told you can only have it that way around. We were given Folfirinox as a first line of attack and told that if it wasn't working/or not tolerated then they would switch it over. Now Abraxane was not licensed for PC at that stage but I really can't see a reason as to why you couldn't do it that way around. I would definitely have a second opinion on that matter if you want to try Folfirinox first (which I personally from research would think is an excellent first one to try).


Re: Surgery for the liver met, again we were offered the possibility of surgery (and I state possibility it was never confirmed) if the tumour was stable/no others appeared after 3 months of chemo. We were not willing to wait that long so had an ablation done privately which might be something you would be interested in. We have private health care which covered it, but I believe the total cost of everything (scans before and after, procedure costs and hospital bills) was about £5k (that's London prices though could be cheaper elsewhere). You have it done while on chemo, there is no surgery and it has worked very well for Carl in our case and his was the same size.


Hope that helps,

Rob

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Hi thank for the information it's very helpful.

Hi JT

If I started with Folfirinox there is no second option on offer from my oncologist, he would not be able to get the gem-Abraxane funded it's only a first line option here in Shropshire


Thanks Sandra

That was very helpful information. I do hope Trevor Scan is good news for you both.


Hi rob

I'm very nervous about having Folfirinox with no back up. I have looked into nanoknife abulation but I need to start chemo first. I'm glad Carl had responded well.


They have also said that I will be in hospital for 3days no pump fitted to come home with?


Thanks


Clive

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In hospital for 3 days on Folfirinox? How bizarre. I can't believe they would want to keep you hospitalised, taking up a bed, for the 46 hour infusion! Ask around Clive, I'm sure you'd rather be at home.


This is from pancreatic cancer action


"TYPICAL FOLFIRINOX TREATMENT

The treatment will usually consist of the following:


Day 1 Oxaliplatin (a colourless fluid) infusion (by drip) over 2 hours, followed by Irinotecan (a clear, slightly yellow fluid) and folinic acid (a clear, pale yellow fluid) infusion over 2 hours, followed by Fluorouracil (a colourless fluid) as a fast infusion over 15 minutes, followed by Fluorouracil as a slow infusion over 46 hours (at home) via a pump through a central venous catheter (PICC line).

Day 3 District nurse home visit to take pump off and flush line.

Day 15 Repeat of day 1 and start of next cycle of treatment

This treatment is repeated every 2 weeks for a total of 6 to 12 cycles."

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PCUK Nurse Jeni

Hi All,


We have some information on our website about how Folfirinox is given, as follows:


"How is FOLFIRINOX given?

You will need to have a PICC line (or central line - Jeni) inserted, but the chemotherapy can still be given as an outpatient in the chemotherapy unit. FOLFIRINOX is given over 2 days in a two-week cycle. On day 1 you are given an infusion of oxaliplatin and irinotecan and a bolus (injection) of 5-FU, followed by a continuous infusion of 5-FU for 46 hours. The exact number of cycles you have will depend on your treatment plan, which your oncologist will discuss with you, and how well you respond to it."

Our info can be found here: http://www.pancreaticcancer.org.uk/information-and-support/treatment/chemotherapy/main-drugs-for-pancreatic-cancer/folfirinox


This information is checked by members of our Medical Advisory Board – but it could be that practice may vary across the country.


Jeni, Support Team.

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Hi JT

I here what you are saying but when I speak to my upper GI nurse I get the same answer. So I'm going to try and get a better picture by contacting one of the nurses on the ward,if I can.


Did Carl get offered a back up treatment to the Folfirinox? How is he coping with the symptoms?

I'm getting pushed towards the Gem Abraxine because there is no back up.


I'm going to get nanoknife or Frequency abulation privately if I can. But my Oncologist won't refer me, he said I need to get my GP to do it.


Clive

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If you are doing it privately you don't need to be referred, you just need to ring up the Drs secretary. I don't know if there is a specific list of places you can get it done but the RF ablation will be done routinely in most hospitals. Google might help you out there finding your local hospitals that do it and give them a ring. Nanoknife is only in London with Proff, their number is easily found on google and his secretary is called Simone, though we were unable to have nanoknife he did Carls RF ablation and I thought he was great.


It was a while ago when he started his F-Fox and as I said Abraxane wasn't even an option at that point, but yes I am pretty sure he was offered more Gemcitibine if he couldn't handle the F-Fox but nobody said how useful that actually would be. He's coping ok on it, no longer that sick, but the other side effects like the cold sensitivity are worse than they were before. He's coping ok and strangely his hair has pretty much grown back even though he hasn't finished the course of chemo.


I still don't understand why you only have the chemo offered in that order, I'm guessing its down to funding, though it still makes no sense to me, but hey I don't work for the NHS or in oncology so why should it! :)


Rob

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Slewis7313

The fundamental problem with Abraxane is that the Cancer Drugs Fund has approved it's use pending NICE approval, but exclusively for first line treatment of metastatic disease. I believe they are being lobbied to ease these restrictions, but for now it will not be funded for second line treatments. If you are fortunate enough to be able to self-fund, then the options are obviously more flexible.


Steve

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Ah, there is your answer Clive. Thanks Steve.


Rob, we were told side effects from The Fox tend to be cumulative, partic fatigue. With Ray his sickness was minimal, as was diarrhea though I'm sure rough for him! Didn't seem to suffer that much from the cold either but the fatigue was awful and very debilitating. He didn't lose his hair.


Seems very different effects for different people.

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Had a phone call today from a specialist nurse in XX. she had very kindly offered to e mail one of the oncologist there asking about what he thought about Nanoknife in my case. My oncologist is in XX. The answer back was that nanoknife is not any good for metastatic pancreatic cancer? Yet I see so many good reports on forums like this one.

Some times I wish I didn't ask so many question.

I'm trying to be positive but just keep getting knocked back by negative news and information.


Clive

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So many medics are very nihilistic when it comes to this disease. I don't think the Nanoknife could be used in the presence of multiple metastases but may well be the best treatment for an isolated liver metastasis, especially if surgery is ruled out.


Initial chemotherapy is important to hopefully "mop up" any microdeposits that might be around.


My best wishes for your treatment success.


Mark

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Slewis7313

Clive, It really is hard fighting your way through the possible options and not always appearing to have the support you might hope for from your specialists. Nanoknife is a particularly difficult one as it does not have NICE approval or UK clinical trial data. There is however a fair bit of positive anecdotal data from sufferers as you quote rightly point out. My own Oncologist and Surgeon are likewise not keen on it, but have agreed to support me if I opt to go down this route.


I would suggest you contact Professor secretary and ask for their advice. They may well agree with your own specialist, but there is nothing to be lost in putting the question to them.


The responses we sometimes receive can knock us back, but we just need to keep pushing all avenues..... Nothing ventured, nothing gained.



Take care and keep your pucker up.


Steve

X

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Thanks very much every one that has posted a reply with information and good wishes it's been much appreciated, by me and my family.

One last question is there any one out there that has had Gemcitabine and Abraxane?


Thanks


Clive

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Hi Clive,

Haven't been here very much later, as am trying not to let PC rule our lives!

Yes as Steve says, my husband has had folfirinox and then abraxane. He started the folfirinox 2 months after surgery (a whipples and then a pancreatectomy)and was pretty rough with it. His haemaglobin was always low, he had lots of sickness and each session left him weaker. But I suspect a lot of this was down to the surgery.

In January he couldn't really take it any more, and as he was in constant pain,diarrhoea and sickness we suspected it was no longer working. We are fortunate to have company private health care, who were happy to pay for abraxane. Since starting this he has steadily improved, and the professionals, including his oncologist can't believe the difference in him now. However again some of this I suspect might be due to the fact that it has taken him this long to get over the surgery.


There was some shrinkage of Paul's tumour, which corresponded with the change over of regimes, and no growth to date. (Touch wood!) with either.


I honestly can't advise you which course is the best, and it is a horrendous position for you to be in, having to make this decision. It is also so very unfair that NICE will not approve abraxane as a second treatment. What I can say is that folfirinox was Paul's very dynamic consultants first choice, and the evidence seems to suggest that this is the treatment most likely to shrink a tumour, but at the moment we are very happy with abraxane, which we feel has given us a second chance.


Hope you can reach a decision you feel comfortable with,

Best wishes,

Nikki

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Hi Clive,


My mother (65 years) is also receiving gemcitabine + Abraxane as of February and she has tolerated it quite well. The main symptoms have been mild nausea (no vomiting), taste disorders, tiredness, reduced platelet count and low haemoglobin. Nevertheless, throughout this time, she has been able to take yoga classes and go for walks and has been able to put on quite a lot of the weight she lost at the early stages of the disease (she was disgnosed with locally advanced PC in December 2013). Mom is due to have a CT scan next Tuesday which we all are feeling nervous about. So we don’t know about the efficacy yet. But I am feeling optimistic because it seems to me that despite the chemo symptoms, she is feeling better, not worse.


I wish you all the luck with your difficult decision and the treatment you choose.


Johanna

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