jclegg
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Many thanks to all of you for responding, sharing your experiences – and caring. We will keep all of this in mind as we journey to a potential solution – we are waiting to hear from Pittsburgh about a date – expecting the week of the 23rd of June. Heather – and all the rest of you -I wish you God’s blessing as you continue your search at Loma Linda, or elsewhere. We will be thinking of all of you – as I have as I was “lurking” here reading over the last few weeks – and praying as you pray for us.
As for Mayo – did everyone read that Ted Kennedy left Boston and Mayo and went to Duke – had his operation there – will go home for chemo and radiation. I guess everyone is right – 2nd, 3rd – even 4th opinion of neccessary!
Joyce
Thanks Kris – i am going to search and take it with us (the article). I want so badly to buy Butch time, but – don’t want to make a mis-step, either.
Jeff – thanks for the thumbs up – good luck with the hydrozine sulfate therapy.
Lisa – metanasty’s it is – a much better word, I think.
and Marylloyd – thanks so much for the info on Dr. Gamblin. I am so happy for you – it sounds real good.
I am feeling SO much better – just talking to you guys helps!
Joyce
Thanks Jeff – that is how we have seen it, also – but – that mets thing really scares us, as we also feel that Dr. Nagorney has the experience and credentials to warrant listening to! I have read so many posts on this site, and am so encouraged when I see the number of years you have won yourselves – people like you, and many others, by bravely fighting this terrible enemy. This is such an inspiration for us “newbies”.
We were so hopeful when we went to Mayo – we didn’t even realize that so few people were able to have a resection. Now we are afraid to get our hopes up again – but – we will go and find out in any case. I have read this over and over again on this site – but – Butch is my best friend in addition to my husband. and – I want him well. He is 66 – 67 in December, and it was hard to understand the diagnosis – his bile ducts have not plugged up or anything, so it is hard to believe that it got this far and this bad – w/o any symtoms, but – I guess that is normal for this disease, also. He has had Primary Sclerosing Cholingitus for about 6 years, but – no real symtoms from that either. It is all kind of surreal, which you have probably heard MANY times before. Actually, he has more side effects from the pulmonary embolism than from the cc!
Thanks for the advice – Joyce
