Does anyone know how the chemo regime... - Pancreatic Cancer...
Does anyone know how the chemo regime is decided. My husband is on Gemcitibine but I have noticed on this site that others are on GEMCAP?
It seems to be based on where you live and dare I say it, costs !!!!
We took mum to Liverpool for a second opinion, you don't always have to stay with your local authority, it's wherever you think will get the best results,
Good luck and keep us posted, del xxx
Hi
Del is right and it can also be down to the opinion of a particular oncologist and sometimes whether you are a private or NHS patient.
The factors doctors usually will weigh up is the stage of the cancer, the fitness of the patient (some chemo regimes can be very toxic) and the wishes of the patient (some will refuse chemotherapy). Are you in a pancreatic cancer specialist centre? You can find a map of UK centres on our website here pancreaticcanceraction.org/...
If you feel that you want a second opinion you are entitled to ask for one. You can be referred to another specialist either by your current oncologist or via your GP. If you contact us on Tuesday we can talk you through the chemo regimes we know are currently being offered to patients on the NHS and privately.
Our office number is 01428 656269
Best wishes and good luck,
Ali
Pancreatic Cancer Action
Thanks Ali. Peter had an unsuccessful operation at the Queen Elizabeth in Birmingham. By unsuccessful I mean because the tumour was round an artery they were unable to remove it BUT they did manage to make life better by rearranging his plumbing (Pete's words) which now means his bile duct is no longer blocked and he is rid of the awful jaundice that made him so ill. The chemo he is on is wiping him out for a couple of days now but he is fighting. He gets depressed that he doesn't have the energy to do all that he wants to do and its getting harder to keep him going and its a battle to find food that he enjoys but he hates the fortisip drinks. To date we haven't found anyone that likes them and we chat to loads of people at the hospital and chemo centre etc. By the way as we live in Evesham in Worcestershire we go to Worcester for Pete's chemo. We could have had it at the QE but its quite a journey and they said the chemo would be the same wherever but now I find there are more options of chemo hence my original question.
Hi Ali, my mum has just been diagnosed with pancreatic cancer with secondary liver tumours. We would like her to be referred to Christie's in Manchester, she is resident in Reddish and currently at a general hospital in Stockport. She is a NHS patient at present. I have no idea as to how the system works or how to proceed with mum's treatment. (I have lived o/s UK for over 25 years, but have family in Manchester). I do have some funds should it be necessary to go private but these are limited and I appreciate the fact that the diagnosis will not differ wherever mum is treated. The only information they have given her is that an operation is not possible. My sister seems to be chasing them as to what they are going to do next, they seem content just keeping her comfortable for the moment? We would hate to miss any opportunity that she may have access to just because we are ignorant as to what is out there. I would love any advise that you can offer us in these initial stages. Thank you, Julie
I was going to start chemo last thursday on gemcitibine but that was cancelled and I am now going for another opinion to Liverpool on Tuesday I don't know what options are going to be available to me except it is going to be some form of chemo. I will keep you informed what chemo I am advised to go on.
Delly1 how did you get on at Liverpool.
Thanks Ali. Peter had an unsuccessful operation at the Queen Elizabeth in Birmingham. By unsuccessful I mean because the tumour was round an artery they were unable to remove it BUT they did manage to make life better by rearranging his plumbing (Pete's words) which now means his bile duct is no longer blocked and he is rid of the awful jaundice that made him so ill. The chemo he is on is wiping him out for a couple of days now but he is fighting. He gets depressed that he doesn't have the energy to do all that he wants to do and its getting harder to keep him going and its a battle to find food that he enjoys but he hates the fortisip drinks. To date we haven't found anyone that likes them and we chat to loads of people at the hospital and chemo centre etc. By the way as we live in Evesham in Worcestershire we go to Worcester for Pete's chemo. We could have had it at the QE but its quite a journey and they said the chemo would be the same wherever but now I find there are more options of chemo hence my original question.
My husband had gemcitibine, plus another one. There was two specalist involved, one who decided what he would have and another who he saw before that decision was made, both were in favour of him having the gemcitiabine. (he was treated privalely, not sure if this effects what he was offered, judging by Ali's comment it may have).
My dad (in U.S.) started on Gemcytabine, but due to allergic reaction, couldn't continue this treatment. Doctors put him on 5Fu--- a cocktail of Oxiplatin (sp?) and Ful.... (sp?) He did well on this coctail. In 6 months he was free of tumors on his pancreas and liver. However, his neuropathy got worse in his hands and feet. He still feels numbing, tingling and pain. After 3 months, though, his tumors had reappeared. He is back on the Fu part of the cocktail. We are waiting 2 months of treatment to see the results. The other Oxiplatin was not restarted because it is the medicine that caused the neuropathy to worsen.
If you mean a combination of both gemcitabine and capecitabine these are the drugs that are being used in the latest European trials to help improve the survival outcome for pancreatic cancer. Liverpool was one of the centres taking part in these trials. If you were considered eligible and agreed to take part you were put forward and randomly selected for the combined drugs or gemcitabine alone. The trials may now have closed.
A very good source of information is a Radio 4 programme by Dr Mark Porter, 'Casenotes' which was broadcast in February 2011. The Liverpool team explain very simply about diseases of the pancreas and several patients tell their stories.
Best wishes and good luck.
No, it was not capecitabine. Actually, I have never heard of that one. 5FU is a cocktail made of 3 chemo medicines. Gemcitabine, oxyplatin, an fulflorimax. It is used a lot with colon cancer patients. Like I mentioned before, it worked on my father (without the Gemcitabine), but doctors would not give him anymore after the rumors had reappeared because of the numbing of the nerves in his hands and feet. Now he had to turn to a primary trial medicine. We will see if the pills/capsules work in a month. From speaking to various doctors, I have learned that most pancreatic patients begin with the Gemcitabine treatment and have success. My father is just allergic to it.
No, it was not capecitabine. Actually, I have never heard of that one. 5FU is a cocktail made of 3 chemo medicines. Gemcitabine, oxyplatin, an fulflorimax. It is used a lot with colon cancer patients. Like I mentioned before, it worked on my father (without the Gemcitabine), but doctors would not give him anymore after the rumors had reappeared because of the numbing of the nerves in his hands and feet. Now he had to turn to a primary trial medicine. We will see if the pills/capsules work in a month. From speaking to various doctors, I have learned that most pancreatic patients begin with the Gemcitabine treatment and have success. My father is just allergic to it.
Thank you for your answers. Pete has now had 7 lots of gemcitibine but is totally wiped out, very tired and weak. Not nauseous but just completely exhausted. We are awaiting a CT scan to see what affect it has had as he doesn't wish to continue until he knows "its worth it" - his words.