new member NZ
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Posts
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Hi,
I do not think IRE is a popular procedure there in your country,I know radioembo is popular in AU, your neighbor country.
But PEI is a relative common procedure and can be applied to lymph node with repeated applications to delay the progress of the tumor.
God blessSnikwah…..I would like to follow the others and welcome you to our site and compliment you on your physical abilities – I am in awe of you. My oldest son competed in the World Triatholon Championship in New Zealand last year and he remarked on the incredible swimming abilities of the New Zealand competitors. He came in 11th only because he could not keep up with your Countryman and those from Australia.
Snikwah, our Ken mentioned several wedge surgeries performed due to lung metastases – not sure it is applicable in your case however; I though to attach the link to his posting:
http://www.cholangiocarcinoma.org/punbb/search.php?action=show_user_posts&user_id=8608
I am glad that you have found us and wish you the best of luck with whatever treatment you will decide on. Please keep us posted – we care.
Hugs,
MarionHi Snikwah,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you are going through. But I’m glad that you’ve joined us here as you are in the best place for support and help and I know that you’ll get a load of both from everyone here.
Thanks for sharing what you have been through with us all. I can’t help with any personal experiences here as my dad was not a candidate for surgery and did not have chemo either, he had PDT as his treatment. But I wanted to join in with the others in welcoming you here. It gets quiet around here sometimes at the weekend, especially in the summer and I know that you will get more responses to your specific question soon.
I hope that your meeting today goes well and that you get some good news from the cardiothoracic surgeon. Please let us know how that goes and what they say. And please keep us updated on how everything goes. We are here for you and we care.
My best wishes to you,
Gavin
Welcome Snikwah!
Sorry you had a reason to find us, but you are definitely in the right place for support and information about this disease.
I also had a Whipple and recovered quite well, resuming all my former activities eventually.I wish you the best and I am sure that others will chime in with support and information.
Hugs,
-Randi-Lainy and PCL1029
Thank you for your posts
I will look into IRE
I realise I left out my age on the previous post.I am 68yrs old married with a loving supportive wife who has been my mainstay
From reading other post I realise this is a very supportive and informative forum for a poorly understood diseaseHi,
How about IRE ?http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=73857#p73857
God bless.
Dear Snikwah, welcome to our remarkable family but sorry you had to find us.
You have already done the best by seeking another opinion. It will be interesting to see what he has to say on Monday. My Husband had a Whipple and while he had other healing problems he didn’t have Mets. I am wishing you the very best and please keep us updated on your Journey. You have come to the right place and I know you will be hearing from others tomorrow. On this side of the water it is 1100PM. I know that with the Whipple you have already been through a lot so am hoping this is a small bump on the road.I was diagnosed with cc in may 2010 and my tumour resected by a Whipples procedure.Unfortunately there was a positive microscopic pancreatic margin
Post surgery I had two x chemo cycles of capecytabine/gemfibrazole/cisplatin/rubeomycin separated by a course of radiotherapy to the positive margin.
After this treatment I returned to normal life to the extent of swimming up to 3kms 4x/week and jogging up to 8kms 3x/week….I am still doing this.
However 2 weeks ago out of the blue I had a minor episode of pancreatitis which is thought due to pancreatic duct stenosis after radiotherapy.
but the CAT scan and then a PET has shown up three metastases in my lungs..2 in one and one in the other..these are in the lower lobes and amenable to microwave ablation. As a further complication there is one hilar lymph node in the left lung rather close to the pulmonary vein.As a result the interventional onchologist is reluctant to treat the mets.On Monday I am seeing a cardiothoracic surgeon to discuss possible surgical resection possibly with a microwave ablation on the non lymph gland affected side.
My onchologist has offered further chemo if I become symptomatic
I would be pleased if anyone on the forum has any advice or experience similar to mine.I feel that I would consider any life-extending procedures or treatment particularly as my other bodily health is so good
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