January 20, 2010 at 1:21 pm #34814
Hi Margaret. Teddy’s B.R. this month was .08, pretty dang good. Goes to show again that the more we know…the more we don’t know. I had to fight for his PET in December and now the approval came early for the next one! Go figure.
He is supposed to get one in March according to the Radiologist but the Oncologist just ordered one for February when his last one was December 28th. Also an MRI to check the scar tissue etc. I have to call him today and see if he meant to have it so soon again instead of March. I am having mine the 29th of this month. Since I have never had one and I now have this other rare cancer (GIST) he wanted me to ahve one also. I wonder if they give a 2 for 1???January 20, 2010 at 3:23 am #34813mlepp0416Participant
Lainy: Sounds like Teddy and Tom are having similiar CA 19 levels. Tom’s is 336, down from 466. Tom should be having his PET within the next three weeks, can’t wait to see what it reveals. I hope they can resolve Teddy’s issues. What is his Bilirubin level at?
Adam, I don’t know much about cyberknife, only know that my hubby Tom was not a candiate because the tumor is involving not only the biliary tree the also the main blood vessel in the liver. Keep reading posts on this site, keep asking questions.
Go with God and KEEP KICKIN’ that cancer
MargaretJanuary 20, 2010 at 1:38 am #34812
Adam, Teddy is having that problem now. His CA19 has climbed to 375 from 11 in September. We know there are 2 new small tumors but the PET showed them as shrinking. We don’t know why they are but we will take it. He is having an MRI early next month to see if it is scar tissue in his Bile Ducts as his Bilierubin is better than normal. An MRI will show scar tissue where the PET does not show it.January 20, 2010 at 1:20 am #34811adamParticipant
Marrions, thank you for the info and links. Lainy, thanks for the info as well. I am glad your Teddy had success with cyberknife. Regarding my dad, It could be scar tissue causing blockage but ca-ca19 level was high. I guess they need to know exactly what is causing it and where it is for cyberknife. They can’t see it on these cat/petscan machines. Thanks again!
AdamJanuary 19, 2010 at 1:21 pm #34810
Too, too bad. Teddy could not be here without it!January 19, 2010 at 6:37 am #34809marionsModerator
Lainy….I spoke with the Department Chief. One of the reason he mentioned was the recruitment problem.January 18, 2010 at 1:56 pm #34808
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”.January 18, 2010 at 7:44 am #34807marionsModerator
Adam…I believe that cyberknife radiation is more considered to be a pin-point radiation which is produced from a small linear particle accelerator and a robotic arm. It allows the energy to be directed at any part of the body from any direction.
It is a method of delivering radiotherapy, with the intention of targeting treatment more accurately than standard radiotherapy.
UCSF offered a clinical trial however, it has been halted. But, you may still read up on it by using this link: http://www.clinicaltrials.gov/ct2/show/NCT00630890?term=Cholangiocarcinoma+AND+UCSF&rank=2
Also, here is the link to the company: http://www.cyberknife.com/
I have been told that it has been quite successful with the treatment for prostrate cancer and lung cancer although, localized tumors on the liver have been treated also. Of course, as far as I know, the criteria includes: no vascular invasion, tumor size limit: 2cm and no more than 7 tumors may be present.
Catherine Bonnetti, the Public Relations Manager, has been really helpful with answering questions, also. You may reach her at: firstname.lastname@example.org
CT (computerized tomography) uses a sophisticated X ray machine combined with a computer to create a detailed picture of the bodyJanuary 18, 2010 at 5:45 am #3088adamParticipant
A while back surgeons told us cyberknife is the same thing as what is out there already with less side effects. They pretty much put it down. I believe it can shrink tumors but has it ever got rid of them? also Is a petscan better than a catscan? What is the difference? Forgive my ignorance in these matters. My father is on his 2nd metal stent and I’m sure they said he had a tumor but now they say no growth in bile duct but something is still blocking it. Seems exploratory surgury is the only way to know but I’ve doubts about that. Thanks!
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