lainy

Stan, I am sorry as this may not be the answer you are looking for. Grab all your test results and head for another doctor. If you feel he is not interested I would dash to another. Listen to your gut…it’s usually right.

Too, too bad. Teddy could not be here without it!

Hey Kris, you are truly a pee pee Goddess!

Marion, did they say why the trial of cyber knife was halted at UCSF.

Adam, my husband, Teddy had cyber knife a year ago. His was not on the liver but where his duodenum used to be. The tumor must be under 7cm and his was 7cm. He had 25 radiation treatments to shrink it to 6cm and then the cyber knife. It is amazing. Only 3 treatments and he was done. I am not good at medical terms but first you get 4 little gold “rods” injected into the area to “mark” the tumor and guide the laser. Then this laser only “zaps” exactly where that tumor is and does not affect any other area. Once the tumor is hit with the laser it begins to die immediately. It will stop growing and in a year appears to be like a piece of shriveled up ash. Not sure if it disappears totally but it doesn’t matter, it will not affect anything else. Teddy now has 2 very small tumors one near a kidney and one outside the liver. They are so small nothing can be done yet and in fact seem to be shrinking.
Also we just went through the question of PET vs MRI. a PET Scan lights up any tiny or large cancer area. An MRI “defines” it. If you go to our search engine at the top of the page and type in anything you are questioning you will get all the posts up that pertain to that subject. I have posted a ton on cyber knife.
My humble opinion is that Doctors who put down cyber knife probably don’t know enough about it. Believe it or not we have found doctors who had never heard of it! Perhaps a second opinion is in order. Curious, but have they mentioned scar tissue as causing the blockage? Scar tissue does not show on a PET but shows on an MRI. You can look up my posts under “lainy”.

Hey, Gerry. Just wanted to add that what happened to Teddy was rare. His actual surgery was not that bad for all that was done. He was sitting up that night and walked late the next day! Unbelievable. If it had not been for his set backs that were no ones fault, he would have been on the golf course earlier. I think part of it was due to the fact that the first Whipple was aborted after 4 hours and 3 weeks later he had the “real deal.’ I may have missed something but why are they waiting so long to do your surgery?
I also want to add for anyone listening…..When I had my surgery Oct 1st, I asked for an epideral and that relieves you of any big discomfort for 24 hours or 48 hours, which is wonderful as you have a chance to garner a little strength. It does not hurt and well worth it.

WOW, Betsy that is amazing, thanks. By the way I love your saying about not going to a Doctor who has no live plants in his office. What about a Caretaker (me) who can kill an artificial plant???? Hope you are feeling better!

Randi, I am more familiar with Mayo in Rochester MN and MD Anderson in Houston. I know its a project but if you can Fax them your results they will give you an idea over the phone. We have quite a few of our “Family” in your NY area. I just know they will also chime in to help. Marion is also excellent at telling people of possible places to get in touch with. This is the weekend and sometimes we are not that busy on line but I bet by tomorrow night you get a bunch of responses. I am still in awe of your progress. It took Teddy about 6 months but then he had an aborted Whipple, then a double ecoli infection then the “real deal Whipple” at the age of 73. Then when we got home (we had been visiting our kids in Milwaukee) 3 months later, he developed a small hole at the resection and had to go in to rehab with nothing to eat or drink for a month. Just an IV & candy bag. The hole did heal on it’s own by starving it. They just didn’t want to do more surgery on him at that time. With all that, the healing took a little longer. Oh not to mention that when flying back to Phoenix from Milwaukee both tubes he had in his stomach….blew out on the plane. What a mess. He was telling my daughter when we finally arrived, “did ya see the movie Airplane?” We cracked up. Keep up your great attitude and good luck on getting a 2nd opinion.

Hi Margaret, butinsky here, buttin in…..Teddy and I attended a conference here in PHX last March with Marion. The Conference was for surgical Oncologists from all over the World. We actually met quite a few from Asia. Not sure but I think there were about 2,000 ONCS. About 15,000 people a year get CC. In my book 1 is too many, know what I mean? There is not much research done on CC because it is so rare but I just read where a little research is being done in Tawian. Never heard it was more prevalent in Asia but it is said they do have a parasite in some of the water called a “liver flukes” that may be a carrier. It attaches itself to the bile ducts and lives there undetected for 30-40 years. When it leaves it leaves behind CC. You can look it up on the Web. We had a few Korean Vets on our site who had CC, Teddy being one of them. This is not proven yet, just considered. It doesn’t account for others who have not been to Asia. I think many doctors poo-poo treatment because they don’t know enough about it! Any doctor who poos treatment about anything to me does not want to admit he doesn’t know. That is when I run to another doctor. Sorry, that is just how I feel about a rare disease. Also why we tell people to ask a doctor how many patients he has treated with CC. I love all your questions as the best way to “kick” this is to learn as much as you can. Keep on asking and keep on kicking!