Dear Lainey, realistically optimistic is a much better description and aspiration. I will share it widely and try to live up to it. A task made all the easier by the ability to be part of and learn from this community. Will keep updated. H
As mentioned in my introduction my mother was diagnosed as recurrent Stage 4 CC two and a half weeks ago. As background she had long dealt with ulcerative colitis and over 5 years ago had a pantoprocolectomy and formation of ilealanal pouch. This had improved her quality of life but started creating issues about 2 years ago.
The discussion about whether they should have been looking for CC can be left for another day, but last April the Doctors saw growths in her Bile duct. Further examination revealed that it had entered her liver and initially we were told that Resection (which I think is the correct word - I am a true layman) was not possible based on where it had got to. However further tests, plus my 58 year old mothers good overall health, allowed them to go ahead. The operation went well and as part of it they removed a few inflamed nodes. However the surgeon took other nodes further along and did not see infection. Mum was started on a course of Chemo, taken as a pill, that was to "just be safe". Mum recovered well from surgery and was able to deal with chemo pretty well with only some sore feet and hands. Rightly or wrongly we interpreted the result as a lucky escape.
However post chemo she started developing significant pain and lethagy that they could not explain or treat. Mum has had previous history of pain medication issues and depression (tied to previous colitis treatments) and I think this might have confused the situation. Either way it took a while to understand what going on and about 2 months in they did a scan and found growths in her Mesenteric fat. This was pushing on her nerves and causing considerable pain. So it was back.
Mum was started on chemo of 3 cycles (2 on 1 off) of Gem/oxaliplatin, scan and then all going well 3 more cycles. She is in good spirits and active and the first two rounds of chemo have not really seemed to effect her. Hopefully it is doing its stuff. The management of her pain is still not perfect (apparently nerve pain is hard to get right) but it is much better than before Macmillan got involved. Her good health means that at moment it all seems a little surreal. She is off having a blood transfusion now as her blood count a little low and they thought it helpful as we planning a trip to London for her week off - she can rest there and have a nice change of scene.
My parents live on the Scottish Border and my mother was initially treated and operated on in Edinburgh (Gavin we are practically neighbours). She is now getting her Chemo at Borders General Macmillan center with pain support from Macmillian in Newcastle/Berwick. I actually live in NYC but have moved back for a month to be with my family.
So I am full of questions about her treatment and what is ahead. CC seems a pretty relentless disease and from the outside it seems that if a resection or transplant does not work, as in this case, then prognosis even with great response is not really that great (and certainly not what we expected for my beautiful and healthy mother). Well meaning friends keep referring to amazing remissions that so and so had but these seem to be other types of cancer. Of course you wish for the best but at the moment it feels that the best case scenario for prognosis is still pretty marginal in terms of extension of live (of course every day gained is magical, amazing things cans happen, every case is different etc...). If that is the case then it comes to making sure that we get as much as we can and that it is as comfortable and full of joy for my mother as possible. I am trying not to be defeatist but being realistic and aware of what future holds feels important - especially given the desire to be around as much as possible. Am I being too pessimistic?
I will have plenty have of other questions but this seems a pretty important one to start...
Firstly thank you to all who organize and participate in this forum. It is full of helpful advice, information and inspiration for those of us who are in need of it. Which I am now as we found out a few weeks ago that my mother's cholangio carcinoma has returned - non operable or curable. This was after a successful resection and course of chemo last year. She has started 3, 3 week cycles of Cisplatin and Gemcitabine and we are gearing up to deal with what comes next as a family. I will fill in some more information on her background and planned treatment on the correct board but wanted to say hello and thank you.