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- About michele1960
michele1960
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January 2013
November 2016
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February 2013
That sounds really promising Flowerpot! Best of luck with the remainder of your treatment. 'Remission' has a really nice sound to it doesn't it 🙂
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February 2013
Just read through your posts Chatterdog 😞 wow that's so much to deal with, I'm sending heaps of positive thought for your results tomorrow. Stay hopeful and if the news isn't what you want to hear you sound like a strong person that's ready to go in and fight it, all guns blazing. You're only a couple of years older than my daughter , so I feel so sorry you have to go through all this!
Good luck xoxo
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February 2013
Hi there....I've just read your blogs :,( I am so truly sorry you, your dear husband and children, are going through this. I really don't know what to say, except know I'm thinking of you and especially the kids...I have 2 kids and even thought they are 18 and 20 I hope that I don't put them through this terrible time also.
You're a mum and us mums are strong,, hang in there. xoxox
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February 2013
Thanks Sailor, I research and research ..I live in a country area so it's difficult to know where to begin to look. From your experience how on earth do I find the best surgeon for a Whipple . I have been scheduled for the op next month by the same surgeon that did my liver resection in December. I did ask him and he said he's done between 5-10 a year over the past 10 years...this doesn't seem a real lot but I don't know how common they are either. I'm feeling that surgeons in Sydney or Melbourne would have done more but I'm unsure how I go about finding them??
Open to any advice please..
Thanks 🙂
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February 2013
Just wondering the above..as every where I read of the importance of a surgeon that has done many, many of these. Obviously in the uSA they have done more than most surgeons here. If you've had a Whipple would be interested to know your thoughts.
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February 2013
I'm just so sorry for what you and your daughter are going through.. I'm not in your situation but can relate my own experience of when I was young...I remember it so well.
My dad died when I had just turned 7. I remember I used to dream that mum had lied to me and that he may still be alive..I think that's because she decided it was better for my brother and I not to go to the funeral. I think it would have given me closure if I had gone...who knows..
But I also remember clearly using his death against mum if we had an argument. I'd do exactly what your daughter seems to be doing. I'd say 'my daddy wouldn't do this to me if he was here' and things like that, when I knew very well what I was saying. Your little girl is younger, so she may not be as calculating as I was!! :)
All I can say is I wish you the best of everything and hope time eventually heals a little for you both. Xx
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January 2013
Hey Robyn ..i did request to join the neuroendocrine group when i registered but it still says 'awaiting approval' ?? How long does it usually take plz? Ta 🙂
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January 2013
Sitting waiting for my oncologist...my CT scan from this .morning was online so i read it in dismay...after my liver resection last month my surgeon told me he was confident they 'got' all the tumours and that in segment 4b there was no tumour found (previous CT said there was one there).
Now i read the report and there is indeed a 'low density foci ' in segment 4b & 5 😞 sooo....did he miss it!!!! I was feeling positive before and confident in my surgeon....but now I just dont know....so demoralising :'(
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January 2013
Hi there Bridget :-)...Yes I am in the same boat as you with very similar background. I also find it difficult to find much info on PNETs.
Initially (May 2012) the 1st oncologist diagnosed me with the 'standard' Pancreatic cancer and gave me a prognosis of about 6 months, so as crazy as it sounds I was 'pleased' to find that I had PNET as the prognosis is a little better. Mine had metastised to my liver with quite a few very lkarge tumours there, which I had resected on the 10th Dec 2012. I'm now scheduled for a Whipple in March.
I'm in southern NSW...so use Canberra as my base for treatments. Where are you located?
Wishing you the best of luck with your treatments. x
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January 2013
I'm a 52 year old mum of two beautiful kids - 18 & 20. I have PNET - Pancreatic Neuroendocrine Tumours. I was diagnosed in May 2012. I have mets to my liver, where I had 4 tumours. They pretty much wrote me off saying it was inoperable and have about 12-15 months.
I had 5 rounds of chemo up till Oct 2012...Carboplatin and Etoposide...3 days a week every 3-4 weeks depending if my neutrophils were high enough. After regular CT scans the tumours hadn't responded how they expected and my oncologist decided to give surgery a go as they had remained static.
On Dec 10th 2012 I had a 10cm tumour removed from seg 2 of my liver as well as the 3 other smaller tumours..so lost about 50% of my liver and am scheduled for a Whipple early Feb this year - 2013 (in about 3 weeks).
I've recovered well from the liver surgery but have to admit to being a tad nervous about the Whipple. I think the hardest with the rarity is not having any protocol to follow. .....Initially they said I'd live about 6 months, then it was 12 - 15 months and now a possibility of a few extra years if the surgery goes well. Which is fantastic news for me as I want to see as much of my children's lives as I can!
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