A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Janeystu14
Posts: 6
Joined: Sun Oct 20, 2013 3:28 pm

New to forum

Postby Janeystu14 » Mon Oct 21, 2013 8:34 pm

Hi all
This is my first time on this forum, I was diagnosed in May after being ill for several months prior and being admitted an re admitted to hospital . It's been a rough ride having five stents fitted , really bad jaundice and a whipples procedure abandoned then had lost nearly 3 stone in weight and had the long wait to build myself back up ready for chemo, after 9 weeks they agreed to start so in July I started every other week on Folfirinox and was told I needed 24 sessions. I managed 6 with great tolerance, minimal side effects, but my pain has got worse so they decided to scan after 5 . Today I was given more bad news from my oncologist that the chemo was not working and the tumour on my pancreas and the lesions on my liver had grown. We are now going to try a different chemo, Gemcitabine for the next 7 weeks , if any one has had this I would like to know their experience of this, we was also told that if this is not successful , my other alternative may be clinical trials, however my blood counts for the liver may inhibit the chances of this, again anyone that has experienced this I would love some advice.
I am a 48 year old woman with a loving partner , two boy's and a step daughter, I need to fight on and any information would be appreciated .
Thank you .

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

Re: New to forum

Postby Cathy » Mon Oct 21, 2013 9:52 pm

Hi there

Welcome to the forum. I am so sorry to hear of your diagnosis but you have come to the right place for advice and support.

My partner is 57 and was diagnosed last Dec with advanced PC. He has had 8 cycles of FOLFIRONOX which ended in June. The oncologists decided to build in a break as he found the last 2 sessions gruelling and he hasn't restarted since (they are monitoring him). If chemo starts again he has been told it will be germacitabine. So, a long way around to say that we haven't any personal experience of this drug yet but I am sure you will get many other replies.

Initially we looked at clinical trials but were precluded for the one on offer at the time, not due to his liver (he has 2ndry tumours on it) but due to a newly discovered irregular heart beat. Not cancer related!

I was told by his oncologist and by Dianne, one of the nurses on this site, that some people do very well on this and can be on it for a long time - it is more easily tolerated. You can email them on support@pancreaticcancer.org for more (far better!) information.

As I said, I am sure you will have many other replies but please post again to keep us updated on how you get on.

Cathy xxx

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

Re: New to forum

Postby Bee » Mon Oct 21, 2013 10:23 pm

Hi and welcome,
Sorry to hear of your diagnosis and your difficult journey to date.
My husband had four cycles of gemcitabine and capcetabine. He coped with this chemo really well it always needed to sleep immediately after the gemcitabine infusion. This was his first kind of treatment and it had a good effect.
His situation has changed and he is due to start another type of chemo this week (fingers crossed) , but he did cope well with gemcitabine.

Take care and keep posting

Bee xx

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: New to forum

Postby Sones » Wed Oct 23, 2013 1:03 pm

Hello

Firstly I am really sorry to hear of your diagnosis, it must have been a real shock for you. I was diagnosed with PC two years ago and had surgery followed by six months of gemcitabine. Initially I tolerated the chemo well, tiredness was the main issue for a day or so. However, the second half was more difficult in that I developed flu like symptoms almost immediately after the chemo session along with extreme nausea but these symptoms were manageable with prescribe meds and the support from the specialist nurses. My hair thinned but I didn't loose it all so that was a small bonus. Please don't be afraid to ask any questions, we will all support you.

Sue.x

Thriae
Posts: 29
Joined: Tue Oct 22, 2013 11:48 pm

Re: New to forum

Postby Thriae » Thu Oct 31, 2013 10:07 pm

Hi there

Just wanted to say hello. I'm sorry your chemo to date has not been effective. I really hope you find a way forward through the advice you'll get here and from those involved in your care. The medical trials section is very helpful too.

Most of all I wish you great strength in facing what is a very difficult disease. You are young, and therefore, I would hope, fit and strong. Try and stay positive and draw love and strength from your family. Remember they can gain support here too, as I do as the daughter of my dad who has Pancreatic cancer.

Very best wishes.

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

Re: New to forum

Postby cestrian » Fri Nov 01, 2013 1:46 am

Hi

I was diagnosed end of May this year and having read on here about clinical trials asked what was available locally. After numerous tests and scans I was accepted on a commercial trial based on Gemcitabine coupled with a MEK inhibitor. It's a 50/50 blind trial so although I'm definitely getting the chemo the tablets I take every day could be the real thing or just a placebo.

I'm now on cycle 3 and have mercifully had no real side effects at all and have regained half the weight I had lost and also feel and, so I am told, look much better than when I embarked on the trial. The provision of chemo has been refined so much with anti-nausea treatment included as part of the package. The scans at the end of the first 8 week cycle showed that the tumour in my pancreas and the lesions on my liver and lungs had all stabilised which seemed to please the supervising professor. I'm due further CT scans mid November at the end of cycle 3 so hope my progress continues. If nothing else I'm determined to get my money's worth from my Chester FC season ticket!!

I've been told I can stay on the trial for as long as I want and plan to do so while I feel that I'm still benefiting from the treatment. It saddens me to hear of those whose fear of Side effects deter them from at least trying chemo and/or radiotherapy as no one will hold a gun to your head if you feel the gain does not justify the pain. I'll also give my usual plug for nerve separation surgery if you have severe pain from the pancreas although the provision of this, particularly as the key-hole procedure I had, seems very hit and miss.

At the very least there is nothing to be lost and possibly much to be gained by giving Gem a whirl and I wish you all the best.

Love and Peace

Mike