Update on Ben
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Judy
This is little known but Mt Sinai in NYC has excellent surgeons for CC and liver transplantation and has seen alot of cases of CC. My surgeon was Dr. Myron Schwartz he is the head of surgical oncology. He operated when Sloan would not. I had 6 months adjuvant chemotherapy after a succesful liver resection where 65% of my liver was removed and then resected. I can not sing the praises of this Dr. or hospital enough.
Nancy
Judy, another center to consider is Memorial Sloan Kettering in New York City. Based on your location it’s much closer. Be sure to check out the section “major cancer centers” in the new patients section…it has all the contact information.
Best of luck,
TomHi Judy, I agree with Lainy…write a post in the introductions sections and you will get a lot more input. Meanwhile, I would highly recommend contacting Mayo Clinic in Rochester, Minnesota. Just call their general number and they will guide you exactly what you need to do. They say they deal more with this type of cancer then anyone. We are goingbto MD Anderson in Houston this week for a second opinion, but mostly to look at chemotherapy options that are closer to home. They are supposed to be the top cancer hospital, so you won’t go wrong with either, but I would call as soon as you can for your peace of mind.
Sorry you had to find us, but you will find great support, I have in a very short amount of time.
Tom
Welcome, Judy to our wonderful Family. I think more people will see you and your story if you post your first post under Introductions. Please tell us a little more about you. Like where you are being treated and what the prognosis was.
We look forward to hearing more from you.Hi,
I’m also a new member. I’m trying to get a few names of good doctors with expertise in this condition. I live in Maryland but am willing to travel to wherever I can find a good specialist.Thanks.
Judy
Thanks everyone for all the support, i will let you know how it goes at MD and I’m sure i will have more questions!
Hi Tom,
I hope all goes well at MD Anderson on Wednesday for Ben and I will keep my fingers crossed for you. Please let us know how it all goes.
Best wishes to you both,
Gavin
Sounds like a winning combo: You & Ben, traveling before MD Anderson. I am sure they will answer all your questions, you are going to one of the best places there is for CC! Loads of luck!
Tom & Ben,
I have been following your posts and hope things go well at MD Anderson. As long as Ben feels good keeping doing the things you want to do. Enjoy life one day at a time (my motto also)
I too hope Tom will feel good for a long time to come.Love & Hugs,
DarlaLeaving for Houston today to head to MD Anderson for a meeting with an oncologist Wednesday morning. Ben and I have spent the last few days touring Texas and Oklahoma visiting his family.
He says he found a lump on his chest, the oncologist that we did a consultation with locally in Fort Lauderdale said it should be checked – so at least we will be at MD to see what’s happening.
I will say it’s hard to believe he has anything wrong. Sometimes he has more energy then me – and he looks great, but we know evil is lurking….I only hope that he continues to feel well for some time. Chemo is likely coming in the next few weeks so we are trying to travel a bit more while he is feeling well.
Hi Ben, sounds like all ggod news. I don’t think it’s abnormal to repeat tests when ‘switching’, they want their own. I have heard where 2 identical machine in 2 different facilities can show a difference even a minor one. Good luck with everything.
We found out our GI Oncologist at MD is Dr. Rachna Shroff – I did a search here and didn’t see any results. I also looked at our appointment schedule, I was thinking we would just be meeting with the Oncologist reviewing all of the tests that we had taken at Mayo but now they have more x-rays and CT scans scheduled….Ben isn’t going to be happy with another round of those. Is that normal when you go to another institution for consultation? Especially since all of that was done just two weeks ago….blood tests I understand but more x-rays and CT scans?
Tom…….Isn’t it amazing? Once the bile drains properly, people feel significantly better. I agree with Gavin in that metal stents are much more long lasting than plastic and the likelyhood of clogging in the near future is quite low. Also, great to hear that you have found a GI physician Ben and you feel comfortable with. So much has changed and so much has been accomplished already. Good luck with your visit at MD Anderson. Do you know which physician you will request to make an appointment with?
All my best wishes,
MarionHi Tom,
Thanks for the update on Ben and I am glad to hear that he is feeling better right now and that his bili levels are dropping also. I know that my dad felt much better once he had stent in place and it started to work as it should. As to how long it takes for a metal stent to clog, it seems in general to be around 9-12 months I think but this can vary with each individual. If you do a search on the site you will find some other discussions about this. Plastic stents clog much quicker than this and can do so after a few months. If the metal stent does start to clog, then it can be cleaned out or a smaller stent can be put into the original stent to keep it open.
As to your question about chemo, I can’t really help as my dad never went through that, but the gem/cis combo now seems to be the more standard chemo treatment. If that is wrong then I am sure that others will be able to correct me. I am sure that others will also be along soon to share their experiences of chemo with you.
Yes feeling well right now is a blessing and of course should be enjoyed!
Best wishes to you and Ben,
Gavin
It’s now been two weeks since my partner Ben (51) had his metal stent placed in his bile duct – and yesterday he had the temporary plastic stent removed from his pancreas (that was place there to prevent sever pancreatitis).
The good news is he feels increasingly better since the stent was placed and his blood test from last Friday showed his bilirubin at 4.4 (vs. 21 before)…so we are definitely happy about the bilirubin levels as the doctors said Chemo is most effective if it’s below five.
Right now you wouldn’t know anything is wrong as his energy level is good and it’s the best he’s felt in a couple of months, so it is somewhat bittersweet because we know what we are facing coming up.
So, our next step now is our appointment with an oncologist at MD Anderson in Houston. While we did have the diagnosis, stent and consultation at Mayo Clinic in Rochester , we thought MD Anderson is at least an easier trip for us (direct flight) and less impact in the winter. From what I’ve read and what Mayo said, the most likely protocol will be a Gemzer/Cisplatin combo to start – as they want to be aggressive since Ben is relatively young and “otherwise healthy”.
Right now we are leaning towards “consultation and oversite” by MD Anderson or Mayo – with local administration of Chemotherapy here in the Fort Lauderdale area (based on feedback from some of you that traveling during chemo can be a challenge). We are soliciting friends for recommendations on local Oncologists who we will then determine if they have dealt with CC. (There is a Cleveland Clinic here in the area now and they said they do have an Oncologist who has dealt with it…so I am going to check him out).
My biggest concern right now is how long it takes for the Stent to become clogged, as I know that seems to be an issue. We do have a local GI doctor who we like (he took out the temporary stent), so we do plan to keep him up-to-date on activities but I know he is in high demand.
Anyway, just wanted a place to write all this down while I was thinking of it and if anyone has any advice that’s always welcome – but the key I guess will be what the ultimate recommendation for Chemo will be.
Right now trying to make the most of him feeling so well…which is a blessing for sure!
tom
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