I found out today that I made it into the trial and will be doing the double drug chemo treatment. It was such a relief to hear that news, I broke out into tears of relief,joy and happiness. My wife did the same when I told her. Both us have found it really hard over the past 9 days, nothing was going in my favour. I think that there needs to be a books of do's and dont's that they give cancer patients. I went to the chiro today, something that I've done on a regular basis for the past 20 years, and while they were manipulating my back they aggravated my liver. Talk about a sharp pain as a result. Went to the GP as the pain hadn't dropped much over an hour and was promptly told off. "Don't ever do that again" I was told. Might have been nice to know about it to start with. On a side point, my back feels much better. I start my chemo tomorrow with its double dose of drugs. Must remember not to have a wee before hand (every other time I did and they wanted a sample). Think it might be easier just to hold on until they say it's ok to go. Not sure what side effects the chemo will bring. Hopefully they are manageable. Until later Tim While there is a slight chance, there is a chance. While there is a chance,there is hope.
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Take Care you two. Be thinking of you both tomorrow. Mignon
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Dear jsbach From my own observations while my partner was undergoing the chemo treatment I do not see any reason for celebrations. I do not intend to discourage you at all but chemo is poison and will (as it does with everyone) make you weaker, much weaker. It is something you have decided to do. No one else can make that decision but you. I am not a big fan of chemo, I openly admit it. She has done 3/18 and stopped with it because she ended up in the hospital (twice). After the second time she decided to stop. She was stage 2A and is absolutely fine now. Gemcitabine is generally well tolerated. She could not tolerate it at all. Be prepared for everything, that's all I can tell you. And I wish you much much much of good luck and my thoughts are with you.
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Not really something I appreciated reading! Of course you are entitled to your own view and opinion. Try putting yourself in my shoes for a minute and you might just begin to understand that I am happy to try anything that will extend my life. At this stage my timeline is 6 - 12 months (statically) and I would really enjoy as many months more as I can possible get. And yes, I am well aware of the possible and probable side effects. I am sorry to hear that your partner did not respond well and I am glad that she is now doing well. It would seem that you haven't bothered to read anything about me: my diagnosis was Stage 4 (terminal) adenocarcinoma of the pancreas with two other nodes being found in the liver. Thank you for you best wishes, but I am trying to stay as positive as I can. Reading your negative comments did not help.
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So happy to see that you have been accepted into the trial...I wish you & your wife all the luck in the world...Happy thoughts & hugs sent to you both.. Alison 🙂
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Congratulations on making the trial. I went to a lecture by a member of the Australian Trials group, can't remember her name at the moment, but it is known that patients on trials tend to do better than those who are not. Many reasons - more hope resulting in improved attitude, more intense monitoring, more contact with professionals, more quality information provided, more scanning and more assessment of your ability to cope with the treatment. Of course we know that chemo is detrimental to our bodies, I've heard it described as a blunderbus approach to cancer treatment, but when the options are limited we take it on. I breezed through chemo and although I had side effects none of them stopped me from living my life and taking myself out nearly every day. There will be some days when you feel you can't do anything, allow yourself to be a blob on the couch and watch all those DVD's again! I followed all the recos. regarding pre medication and post medication and rarely felt "off." The worst side effect of all my chemo treatment was from the Dexamethasone (a steroid) which was given to stop the fluid retention and the nausea, resulting in me not being able to sleep. With love Joy K
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Congratulations on making it to the trial. I have been following your story for a little while now and admire your determination to get well and feel that it is this determination that will make this trial work for you.
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Dear jsbach I am sorry if you have read my msg as a msg of discouragement. It is not! All I am saying here is my opinion only and it is based on what I have learned during the last 12 months having my partner suffering from the same condition as yourself. I have read all of your history and I understand that you have been diagnosed with APC stage 4. I prefer to be a realist and instead - wow, great yay so glad to hear you are being excited by the prospect of being poisoned - as I could very well have said - I wished you lots of luck and readiness for all aspects of the treatment. During the last 12 months I have seen 5 people around me either die, suffer of recover. Very close people/relatives, that is. One got so poisoned that she lived shorter and have died from pneumonia even though she was diagnosed with liver cancer. The cancer did not get her, the chemo treatment did. Another one had stomach cancer and had a half of his organs removed to live only 2 weeks after the surgery and died in agony. And so on... Quality of life is important. And quality (to me) is more important than longevity. That's what I am saying. However, this is entirely your choice and as I have already said go for anything you think is right, and GOOD LUCK! I can not be a hypocrite and say to you - wow, great news! These are not great news. It is because of the circumstance you are in you are having to decide to undergo the treatment or not. It is matter of choice. Many have lived through the treatment and it was the price they were ready to pay. Anyone who agreed to undergo a chemo treatment when offered/suggested entered their trials. It is not like winning lottery. Not a big deal, at all. I admire your enthusiasm and will to live longer and again wishing you all the best.
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Hi Tim Hope everything went well today and that you are recovering from the elevated temperature. I have found both postings of DPC to be offensive on a site like this, as he says everyone is entitled to their opinion, but I wonder if he knows the philosophy behind a site like this i.e. SUPPORT. As an advocate for people living with cancer I know the stringent conditions that have to be met to be offered a place in a clinical trial, so again congratulations and hope it gives you what you are seeking. With love Joy K
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Tim No sane person likes to have chemo but it is a necessary evil I was sick all the time I said I would not have it again but on reflection 9 months later I will probably do it again if it is required life is a precious gift and we want to hold on for as long as possible good luck in the trial dont listen to anyone but you're own feelings you know what is best for you stay POSITIVE miracles do happen kj
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It is entirely your opinion, Joy K 🙂 I prefer to be a realist who stands firmly on the ground with both feet and facing difficult obstacles as they come without a false hope or common courtesy received by others. Being positive - yes. Encouraging - yes, but too courteous due to solidarity while not embracing the obvious 🙂 - come on. We are not immature kids anymore 🙂
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I am not getting into a slanging match with you but I would like to make two points. Firstly you have not "walked the walk" as both Tim and I have. You have watched others do it and tried to put yourself in their shoes, a very different proposition to those actually facing a terrible prognosis when we make decisions that hopefully will extend life. Secondly there are many studies that indicate the effect of attitude i.e. hope, trust that a cure will be found etc. results in improved outcomes. You seem to imply that we have our heads in the sand about side effects/outcomes of our treatments - anyone who has been diagnosed with cancer will have been bombarded with so much information and we make a choice to go knowingly into the treatment that may extend life, give us a period of "No Evidence of Disease"(NED) or extend our "Progression Free Survival"(PFS) periods. I am not an immature kid, but a responsible adult and a realist who has carefully considered my treatments and my participation on sites like this. As I pointed out it is for support that members come online, being constantly reminded of the worst that can happen is not support.
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