For people living with incurable cancer only
This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves.
If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group, the relevant cancer type group and the supporting someone with incurable cancer group.
I know I haven't been about for a few days, despite reading some posts that I thought I would quite like to reply to, and my apologies for that. I've also posted this in the Kidney cancer group so my apologies to anyone else who is in both groups and who comes across this twice.
I have had some pain in my abdomen over the last few months and as I am currently on a three month treatment break, I knew that it was unlikely to be any side effects from my medication. I was having some issues with constipation from the painkillers so decided to stop the pain meds to see what happened. The pain become more localised situated over the area of my abdomen where the biggest tumours are and the area where part of my kidney was removed where another tumour is located.
I know the tumours grow again when I am on a treatment break and hoped that when I went back on my meds it would resolve the issue.
My CT scan was last week and they managed to get the report quickly and my appointment with my oncologist was today. Today is co-incidentally the 5th anniversary of my being told that I had terminal kidney cancer so not an auspicious date in my personal history and I suspect that it was this plus a bit of scanxiety that stopped me posting
I went in and could not believe it when the Oncologist told me that although the tumours had grown, for the first time since I started the trial they had not grown sufficiently to meet the criteria for me to go back on the medication so I get a further three month treatment break! Although they cannot confirm it they think it likely that the pain is as a result of some necrosis in the tumours preventing them from growing as quickly as they have previously. If that is so then I can certainly live with the pain and in fact will take a bit more if it is available.
So I am free of the cancer meds for another three months which is certainly good news for Xmas. When I do go back on them one of the things that has often happened is that I can get diarrhoea after eating certain foods, the difficulty is that it is very rarely the same foods that affect me. It does make eating a bit of a Russian roulette until I work out what is causing it.
They have also asked me to sign more authorisation papers regarding the trial as they were supposed to be collating the results but I think that they have been slightly more complex than anticipated. Also that some people have managed to stay on the drug for so long with it still remaining effective so they are extending the trial for a bit longer.
So happy news and a five year milestone reached and passed.
Wishing you all the best,
Gragon that is wonderful news.
I thought, when I began reading your post, that it was going to be quite the opposite. I'm delighted for you. What a Christmas present.
That is amazing. What a Christmas and anniversary present all rolled into one. I am so happy for you.
I really hope you can enjoy Christmas - with all the trimmings - to the full now.
Lots of love xxx
What is a community champ?
That is great news! And it's come at the best time. I hope you eat and drink to your heart's content!
I hope the pain is ok.
Oh Gragon, that's fantastic news, I'm delighted for you and your family.
I know it's been a challenging few months (if not longer) for you. We try and make sense of our symptoms as they change but the underlying fear is always disease progression. I know you were half expecting to hear that, so it's lovely to hear that for now that threat has receded.
So glad you can enjoy the festive season without the anxiety or distressing symptoms to contend with.
Love and hugs xx
what a great Xmas present for you ,so thrilled for you
i know it has been a hard time . ,re diarrhoea ,my drug for breast cancer caused this at the start of treatment ,i always have clean underwear ,wet wipes and bag with me ,just in case ! There is also now a card for cancer patients to show when out and about to ask for emergency toilet .
enjoy your drug break
Great news Gragon. Really pleased for you.
Oh happy happy news, so so pleased for you!!! Have a wonderful Xmas with you and your family xxxxx
Such lovely news for you Gragon! Really nice to hear. Treatment breaks are so necessary and needed and it will give you time to do your Santa duties being as it's over Xmas.
I hope things stay well and any pain is reduced for you.
Very best Xmas greetings to you and your's
"There are no perfect people, only perfect intentions" - Robin Hood Prince Of Thieves
"Once more into the fray. Into the last good fight I'll ever know. Live and die on this day. Live and die on this day" - The Grey
"Keep away from people who try to belittle your ambitions. Small people always do that, but the really great make you feel that you, too, can become great." - Mark Twain
Santa duties, me, I think you must have someone else in your minds eye Gina.
Wishing you and yours a lovely Christmas right back.
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