ashley
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Great to hear the news about your father in law.. glad he is back to work and gaining weight.. great signs of improvement! I’m so glad to hear how far he has come over the last year since diagnosis!
Good luck finding a job.. funny I work at a power plant also.. in CT.. hopefully something will come through soon enough in the IT field for you..
ashleyRandi,
I would also suggest Dr. Myron Schwartz at Mt. Sinai in New York.
Keep us posted and good luck.
ashleyWelcome to this site. I’m so sorry to hear about your mother.
Yes, your doctor is incompassionate ( Dr. Gloom and Doom) and please go forward with another opinion! However do NOT have the second needle biopsy as it has potential to seed the cancer. I hope your second opinion is requesting biopsy via brushings and not a needle??? A visible tumor, CA 19-9 blood results, FISH staining ( sent to Mayo) or Brush cytology are preferred methods to diagnosis this cancer INSTEAD of needle biopsies.
Where are you located?? I’m certain this site can offer a hospital where doctors are more familiar with this cancer.
Ashley
HI Kay,
Have you looked into microspheres or sir spheres? A recent post out here showed good results for sir spheres treatments.
ashleyWelcome,
The fact that you were diagnosed, able to have surgery so quickly, and have a plan for chemo is a good sign as many complaints on this board involve the long waiting for diagnosis as well as whether or not to get 2nd and 3rd opinions because this is not a cancer most docs deal with frequently. So I am glad to hear your treatment is well under way and keep us posted on your chemo. Where are you located?I am also 39. My mom had a liver transplant for this cancer less than two months ago at the Mayo clinic. We live in CT. there are many people on this board fighting this cancer sucessfully so there is a lot of support for you here!
ashley
If your dad does have a Klatskin tumor, if is under a certain size and has not metasticized to other areas he may very well be a transplant candidate. ( correct that the location of a Klatskin most likely means no surgery because it is where the bile duct splits) Mayo, U of Nebraska and U of Utah are a few places that offer this protocol. there may be other locations closer to you. Please consider this as an option. There is an informative on the protocal that marion ( I think) put out here last week.
Keep us posted
ashleyJen,
Sorry you have to be out on this site.It took Yale 6 weeks to give my mother her diagnosis so I understand your frustration. Just please make sure they do not do a needle biopsy on the tumor and that you are in a hospital with a staff that has experience with this cancer. Because of inexperience, second and third opinions are normal. My mother’s cancer was officially diagnosed on her second opinion with Mayo ( all testing took only 3 days!)based on only the following: Ca 19-9 tumor marker over 100, FISH staining, visible tumor found on an MRI, and history of PSC disease. A needle biopsy of the actual tumor was not done as it may seed the cancer. I sound like a broken record as I keep repeating this biopsy stuff again and again but I know the first question I had for the doc was ” did you biopsy it?? ” thinking it could possibly be non-malignant. Best of luck.
ajackson0@snet.net
ashley from CTI agree with Mayo seeing the most patients, but if you are looking for something closer I would try Sloane Kettering. I’m certainly not a doctor, but knowing about the high recurrence rate of this cancer, I would personally choose chemo for maintenance after surgery if I could tolerate it. As a caregiver for my mother who had a transplant for CC, recurrence is now our biggest fear. Even with removing the entire liver AND no sign of a viable tumor for the pathology ( the brachytherapy most likely got rid of it) the Mayo told us they have STILL seen this cancer return. Scary stuff to think about.
Best of luck.
Ashley from CTDarla,
Certainly do not mind if you post it! I’m so glad people are remembering this important info.That posting below was from Brian Evan’s website. His wife Jennifer later posted out here because Brian’s bilirubin was so high and I believe a lot of you read the sad post last week that Brian had passed away.
I had also been in touch with Mt. Sinai and asked that doc about needle biopsy and his response was ” We KNOW better than that”. So please do not get a needle biopsy and understand that there are docs out there that just do not know this because they are still doing them!.
I am also aware of one other Mayo transplant patient denied last spring because of SAND size pieces of cancer that they found during staging surgery that were in line with the path the needle traveled. (www.carepages.com search BuckeyeJimmyMcPeek). Here is Jim’s posting from April 20, 2009:
“The last week has been tough, but we are a strong family and we
are going to be ok. As all of you know the cancer has spread into
the biopsy path that was conducted at Beaumont in Troy when I was
first diagnosed with the mass (tumor).”So please make sure your doc takes other factors into account for diagnosis, CA 19-9 tumor marker over 100, FISH staining, ERCP brushings, etc.
Ashley
Hi. If you are interested in transplant we used the Mayo clinic in minesota for my mohter’s transplant. this was last fall and I do know that since last summer Mt. sinai and sloan in NYC were looking to establish a transplant protocol together ( transplant at Sinai and chemo at Sloan). DR. Marvin Schwartz at Mt Sinai would be a good contact. But if you can get to the Mayo their track record and expertise with the transplant is the best. My mother is 66 so Mayo suggested a live donor because of her age she would wait too long for a cadaver. Mayo in jacksonville, fla does not do live donors but their cadeaver wait it MUCH shorter. There are many factors to take into account. For the Mayo call and and ask for an appt with Dr. Gregory Gores or Boris Blechatz we got in in less than 2-3 weeks. The evauation takes 3-4 days as every test is re-done from scratch. IF for some reason he is not a transplant candidate and the lymph nodes are not involved, something like microspheres would be another option and is a treatment you may be able to find closer to home. If your boston doc did not mention transplant don’t lose hope – only a handful of places in the US use this protocol.
If you want to contact me I can give you more info :
AJackson0@snet.net
Wishing the best for you and your family.
ashley – Niantic, CTHi Rick,
Will your doc let you try the chemo again, even at a lower dose? I wonder why no reaction for months and now there is one. Do the docs have any explanation?
Sending you my best,
ashleyErin,
Good luck to your father – I will be thinking of him. I’m glad that surgery is an option. Here is to a speedy recovery.My mother is 67 and was diagnosed last June. We’re closeby in Niantic, CT about 20 minutes from the RI border. haven’t met too many others with this in our area..
Keep us posted on his recovery.
ashley
