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Have had to change from Folfirinox to Gemcitabine

Posted: Sat May 24, 2014 12:33 am
by Muzzy64
I'm 49 years of age, have 4 wonderful teenage kids and was diagnosed with inoperable pancreatic cancer (liver mets) in early March 2014
Today 2 weeks after my 4th round of Folfirinox I have been told I'm swapping to the Gemcitabine regime. In reality I have reacted to the Folfirinox very badly indeed. An initial extensive DVT in my picc line arm travelling up to my neck has now become Superior venae cava syndrome due to a blockage of my Venae cava by another blood clot (very debilitating). Plus I have felt like death warmed up for the last month. So the decision was made to change me to 3 weekly Gemcitabine which apparently is far less toxic.

Has anyone anything positive to say about this scenario ?. I know in trials Folfirinox had better outcomes. Anyone anything positive to say about Gemzar?

Thanks

Re: Have had to change from Folfirinox to Gemcitabine

Posted: Sat May 24, 2014 6:57 am
by Slewis7313
Hi Muzzy and welcome to the forum. Sorry to hear about the diagnosis and the problems you have encountered with the clots. I had 4 months worth of Gemcitabine early last year and tolerated it very well. After a long treatment break, I am now about to start my second round of Folfirinox as mine has now also spread to the liver. With your Folfirinox problems, changing to the less demanding Gemcitabine sounds to make sense, though you should perhaps ask if it will be administered with the newly introduced drug Abraxane. Abraxane increases the efficacy of Gemcitabine, but can also increase the side effects. Abraxane does not have full NICE approval, but has been added to the list of drugs which can be funded through the Cancer Drugs Fund (in England only at the moment).

Definitely worth asking the question of your Oncologist.

I wish you luck with whatever treatment option you receive.

Steve

Re: Have had to change from Folfirinox to Gemcitabine

Posted: Sat May 24, 2014 8:44 am
by J_T
Hi Muzzy, sorry to hear of your diagnosis and the problems you've had with folfirinox. You are probably aware that blood clots are quite common in pc patients, not that that's any consolation!

Positive stories about gem, there is a poster on here called Laura, she doesnt post that often now. Her husband Brian was diagnosed in 2010 and his only chemo, as far as I'm aware, was gemcap and he's still going strong. The 'cap' being capcetibine, a drug used in combo with gemcitabine which you could also enquire about.

I wish you well with your tratment.

Julia

Re: Have had to change from Folfirinox to Gemcitabine

Posted: Sat May 24, 2014 10:34 am
by Didge
Hi Muzzy, hope you manage better on Gem, most people do and quality of life is important! Alongside your question, do any of you lovely people know if Abraxane is ever administered alone? My man had to stop adjuvant chemo which was only Gemcitabine because of kidney problems but they are now saying they will use Abraxane if it comes back. They would not be able to combine it with Gem though!
Didge

Re: Have had to change from Folfirinox to Gemcitabine

Posted: Sat May 24, 2014 1:02 pm
by jay
Hi Muzzy,
Welcome to the forum and sorry to hear about your diagnosis.
My husband is 49 too ! Hes on his fifth cycle of gemcitabine which he's tolerating extremely well, touch wood. He feels a bit fluey the day he gets it ( A FRIDAY ) but has a warm bath which seems to help. He then gets a bit of a headache, which a couple of tablets seem to shift. Hes fine today, came in to find him decorating the spare room !
Loads of luck
love Jayne
x

Re: Have had to change from Folfirinox to Gemcitabine

Posted: Sat May 24, 2014 8:10 pm
by LMD
Hello Muzzy
Sorry to hear about your diagnosis and everything you have been through. My father has GemCap and, so far, has tolerated it well. (He also had a clot which has been managed with injections)

I hope your new treatment regime works better for you and improves the way you have been feeling
Best wishes

Re: Have had to change from Folfirinox to Gemcitabine

Posted: Sun May 25, 2014 5:37 pm
by Cathy
Hi Muzzy

My partner had folfironox but we were also told he would go onto gemcitabine when that ended. We were told it has had some very good effects and some people stay on it for as long as it keeps the disease at bay. You will probably tolerate that far better.

He had clexane daily injections for blood clotting as well. I imagine this is something that you might be prescribed.

Best of luck

Cathy xx

Re: Have had to change from Folfirinox to Gemcitabine

Posted: Tue May 27, 2014 11:38 am
by PCUK Nurse Jeni
Hi Muzzy, and welcome to the forums.

Great to see so many replies from all the wonderful forum family on here.

Gemcitabine has been used in the treatment of pancreatic cancer since the late 90's, and has had many good results. In fact, up until relatively recently, it has been our only drug really (in the UK anyhow) for the treatment of PC. It is generally very well tolerated, and should be substantially easier for you to have in terms of side effects, and quality of life. Yes, it does have some side effects - the "flu" like feeling can be quite common on the day it is administered, and occasionally, it can cause pain along the vein where it is being infused. If this happens, let the chemo staff know. Other than this, the "usual" chemo side effects, plus a few "specific" ones to Gemcitabine, such as a rash over the lower trunk and legs (also itchy), and oedema (swelling) of the ankles. You can have anti-histamines for the itch, and maybe have some before the drug is given as well to dampen down this reaction.

I wish you all the best for the future treatment, and please feel free to contact us at support@pancreaticcancer.org.uk should you need further treatment.

Kind regards,

Jeni, Support Team.

Re: Have had to change from Folfirinox to Gemcitabine

Posted: Fri May 30, 2014 3:40 pm
by washingtonmike
Hi Muzzy: Yes, I started with five treatments of Folfirinox. My understanding is it's the gold standard for chemo treatment if one can withstand the rigors. After my 5th treatment we did another scan and the single met I had was no longer in evidence, it was considered "resolved". After that I was put on Gemcitabine and Tarceva (daily pill) and had about a dozen treatments. The primary tumor in my pancreas remained unchanged so my oncologist now has me on Gemcitabine and Abraxane. I'm tolerating the chemicals quite well and have an upcoming scan to check for results. The 46-hour iv treatment with Folfirinox was trying but tolerable; it definitely takes some getting used to what with dragging along a portable pump, sleeping with it, etc. Hang in there and my best to you and yours during this very difficult period. Cheers, Mike

Re: Have had to change from Folfirinox to Gemcitabine

Posted: Sat May 31, 2014 5:37 pm
by Cathy
Just wanted to say hullo Mike, our friend from over the pond.

Nice to hear from you and to hear you are doing well.

Keep us in touch with how you are doing.

Cathy xx

Re: Have had to change from Folfirinox to Gemcitabine

Posted: Mon Jun 02, 2014 3:50 am
by Nelsmum
Hi Muzzy, my name is Jane and although bought up in England I now live in Australia, will do a proper intro in the appropriate place, not your thread. I was diagnosed with locally advance PC in Aug 13. Had two 3 month rounds of Gemcitabine only which finished end of Feb. The cancer has not spread or grown or shrunk so am being monitored at the moment. CT in two more weeks. It was easier to tolerate than I thought, was very apprehesive. Great on the day and the next (steroids did that) then flu like symptoms and very tired for couple of days then good for a couple of days to next treatment. Emotionally very brittle and got low blood pressure. Had pain under my ribs. Some nausea but Maxalon took care of that.Took Panadol for the pain and the flu symptoms. So far it is doing the job. Good luck with your treatment, I hope you find it as tolerable as I did. Oh, it hurt going in but the nurses slowed the rate the infusion was running and it was then fine, they remembered that every time I went for treament, they are wonderful!

*** Moderator - Maxolon = Metoclopramide
Panadol = paracetamol ***

Re: Have had to change from Folfirinox to Gemcitabine

Posted: Mon Jun 02, 2014 11:17 am
by PCUK Nurse Jeni
Hi Mike,

Nice to hear from you as Cathy says! Pleased to hear that you are still doing well and tolerating those "chemicals"!

Jeni.