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New Chemo regime for PC?

Posted: Thu May 05, 2016 2:33 pm
by Proud Wife
I will update my hubby's story when I get a chance but he had a visit from his oncologist this morning before being discharged from hospital.

Folfirinox worked well for him. We are not impressed with Gem/Abraxane, don't know if it was responsible for his sudden deterioration but we don't think it's working. Oncologist has suggested one further treatment to see how he goes but I'm afraid it could cause further problems.

Oncologist suggested Liposomal Irinotecan, see link which I've found. I have such brain fuzz at the moment I'm not really up to researching and when I do, nothing sinks in.

Has anyone heard of this regmine and if so, what do you know?

Thank you!
Still very Proud Wife xx

Re: New Chemo regime for PC?

Posted: Thu May 05, 2016 2:34 pm
by Proud Wife
Might help if I posted the link! Emotional trauma of the last few days has made my brain go to jelly!!

Re: New Chemo regime for PC?

Posted: Thu May 05, 2016 2:39 pm
by Proud Wife
Here's another link ... 1/abstract

What does this mean in plain English please?!!!

Hubby's tumour markers on the increase. One could argue it's because of dead cells in blood but liver function results getting worse so can we assume gem/abraxane not working?

If this was your relative, would you consider continuing with gem/abraxane or try this therapy? Nobody has been able to tell us yet, why hubby suddenly has problems walking or why, prior to this latest infection, he was not able to eat solid food. All tests such as ultrasound and barium xray etc has shown no ascites or not blockage, yet hubby in bad shape.

I know no-one can give actual advice but I'd love some feedback please if you could.

Thank you again!

Re: New Chemo regime for PC?

Posted: Thu May 05, 2016 3:35 pm
by PCUK Nurse Jeni
Hi PW,

Thanks for the comments.

So, this is a form of irinotecan, one of the drugs used in folfirinox triple combination.

With some drugs, they are able to use types of "carriers" to deliver the drug or to "carry" the drug within the body, in the hope that more of the drug gets to the target (tumour). Actually, its much more complex than this, but this is the basic gist of how it differs from the "ordinary" irinotecan - it is encapsulated in a liposome layer.

It is not available on the NHS yet - PW, do I recall that your husband is being treated privately? Apologies if not - without looking back at each post, was just making sure. It is hoped this will become an option for FIT patients who will be able to tolerate it, as it is pretty toxic. Given that he has been offered it, then I would expect that they have judged him as fit enough. It was trialled in patients who had had failed Gemcitabine therapy, and who were still fit enough to undergo more treatment. (Napoli 1 study, which you posted the link to).

Just a note about tumour markers - "dead cells" will not increase tumour markers. Tumour markers, in this case Carbohydrate Antigen 19.9 (Ca 19.9), are proteins produced by cancer where there is activity within the tumour. So, it would not be dead cells which are causing the rise, I am sorry to say.

I hope that your husband is able to make a choice with regards to more treatment.

Kind regards,


Pancreatic Cancer Specialist Nurse,

Support Team.

Re: New Chemo regime for PC?

Posted: Thu May 05, 2016 4:24 pm
by Wife&Mum
Jeni, regarding dead tumour cells causing CA19-9 to rise, I think this might sometimes happen during radiotherapy. At least, that's what it says on the Pancreatic Cancer Action Network's webpage on CA19-9: ... is/ca19-9/


Re: New Chemo regime for PC?

Posted: Thu May 05, 2016 5:07 pm
by PCUK Nurse Jeni
I see - thanks for this wife & mum.

Not something which I have heard within clinical practice before I must say, so thanks for sharing, and taking the time to post the link as well.

PW - it does state this here in the context of radiotherapy.

Kind regards,


Re: New Chemo regime for PC?

Posted: Fri May 06, 2016 11:30 am
by Proud Wife
Hi Jeni, thank you ever so much for your comments.

Yes, you are right, we have cover with BUPA, although having seen how wonderful the paramedics were at the weekend, it makes me wonder whether he'd be better off on the NHS and I could save some well needed dosh!

i think you've hit the nail on the head and the benefit of having private insurance is that we do get drugs, like Abraxane which my husband is calling the devil, that are not available on the NHS. He's really not taken to Gem/Abraxane at all. I've just been making some home made jam for the nurses and he's told me it smells like cheese. The ice tea I gave him to take with his pills tastes like fish apparently. Nice! Joking aside, I really do thank you for being honest about the reason why tumour markers were rising.

I don't know where I got the dead cells from but when we asked last week, we were told that it was too early to tell if Gem/Abraxane was working, after having had day 1, day 8 and day 15 of treatment, i.e. 1 whole cycle of 3. However, I just don't want hubby to carry on having something that is making him so ill - Folfirinox was an absolute doddle compare to this as quality of life is equally important to him as quantity.

I'm now reading that Lipisome Irinotecan (why can't they have names that we can pronounce!) is used in combination with 5FU and another of the 3 drugs used in Folfirinox? Is that right?

When you said about hubby being fit, that's not how I would describe him currently so when I questioned him last night, he said it was suggested as an alternative treatment but not one that had been agreed for him. Men - you never get the whole story!!

Thanks Jeni xx

Re: New Chemo regime for PC?

Posted: Fri May 06, 2016 12:01 pm
by PCUK Nurse Jeni
Hi PW,

Oh dear - so, are you saying that the liposomal irinotecan was mentioned as another option, but then he was told that he could not have this, or it was not suitable for him?

In terms of being "fit", we don't measure athleticism type fitness! No, its a grading called the World Health Organisation Performance Status - WHO-PS for short. Its whats generally used to assess a persons suitability for specific treatments/procedures etc...Its a simple tool. Its sometimes also known as ECOG Performance Status - you may have heard these abbreviations from time to time?

Basically, this is what is measured:

0 Fully active, able to carry on all pre-disease performance without restriction
1 Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work
2 Ambulatory and capable of all selfcare but unable to carry out any work activities; up and about more than 50% of waking hours
3 Capable of only limited selfcare; confined to bed or chair more than 50% of waking hours
4 Completely disabled; cannot carry on any selfcare; totally confined to bed or chair

A person needs to have an ECOG of 0,1 or 2 to have chemo (may be slight differences in haematology, where chemo is the only answer to get a person to 0,1 or 2). Folfirinox and Gem/Abraxane need the person to be at least 0 or 1 - nobody with a PS of 2 should be given this, and this is the same for the new option, liposomal irinotecan.

Gemcitabine alone can be given for a person with a PS of 2 - can this not be an option for your husband PW, or has he had this option before? As this is a valid option definitely.

I refer to your comment below:

"I'm now reading that Lipisomal Irinotecan (why can't they have names that we can pronounce!) is used in combination with 5FU and another of the 3 drugs used in Folfirinox? Is that right?" - I wasn't sure what you meant by another of the 3 drugs used in Folfirinox? If you refer to the chemotherapy drugs, then no, there is no other chemotheraputic agent from Folfirinox being used with Liposomal irinotecan, apart from of course what you have mentioned, 5FU. Leucovorin is used whenever 5FU is used, but this is not a chemo drug, and is always given with 5FU to help with the side effects of this particular drug - but its not a chemo drug.

Hope this helps PW?


Re: New Chemo regime for PC?

Posted: Fri May 06, 2016 1:02 pm
by Proud Wife
Ah yes it does! Massively! Thank you Jeni. I have no idea what was said about the Lipisome to be honest. I will find out this afternoon though from the hospital, that way I won't get chinese whispers!

Hubby has always been rated a zero, even during folfirinox. I'd say he's a 1 now. I had no idea that only 0, 1 and 2's could have chemo.

Jeni, he only had Gemcitibane on day 15 as he wasn't well enough for both. And look what that did to him! I'm hoping now that if he is a 1 and I'm sure he is as he only has difficulties eating, laying flat and walking (I say "only"!) then he really wants to give Lipisome a go.

Will update later when back from hospital. Wish us luck!! xx

Re: New Chemo regime for PC?

Posted: Fri May 06, 2016 1:09 pm
by sandraW
Hi Jeni,
Sorry not wishing to be flippant but as interested as I was in reading ECOG grading I was surprised to read 5 was listed! at least it made me shocked/smile sandrax

Re: New Chemo regime for PC?

Posted: Mon May 09, 2016 3:24 pm
by PCUK Nurse Jeni
Sorry about that starkness of grade 5 - I have deleted it as it might cause upset, and not really relevant anyhow! Was eager to get a reply to PW.



Re: New Chemo regime for PC?

Posted: Wed Jul 27, 2016 1:59 pm
by Proud Wife
I am useless at research but I came across this and I don't know if it's of interest to anyone - not hard in posting it I hope!:- ... -research-

Re: New Chemo regime for PC?

Posted: Wed Jul 27, 2016 10:35 pm
by Dandygal76
It is a stubborn bloody cancer is it not? Hubby did well to go the 14 months PW. I will be grateful to see that time with dad. I hope your house hunting is improving. x

Re: New Chemo regime for PC?

Posted: Thu Jul 28, 2016 10:08 pm
by Proud Wife
It's not but thanks for asking DG! Bloody estate agents!!

Yes, he did amazingly well considering how advanced his cancer was on diagnosis. I'm routing for a lot more than 14 months for your Dad.

Night night xx