Hi Lori,
Similar to some of the others who have posted, my experience is quite the opposite of yours. For stage III/IV patients at the University of Chicago they monitor with a CT of Brain, Head& Neck, Chest , and abdomin every three months for the first two years, then every six months until the five year point. Initially, I was concerned about the amount of radiation that represented, but then came to look forward to the quarterly reassurance they provided.
There doesn't seem to be agreement on this, but it sure would seem prudent to me to monitor for mets in those patients with known initial lymph node involvement.
Could it be an Insurance issue? I know that recently U of C required preapproval on my CT, because BCBS had implemented some controls.
Just a thought. Don't want too take your thread too far off.

You and Don have my best wishes for a positive outcome.

Good Health,

Chuck

Lori,

I have had a PET/Ct every 6 months without even having to ask. It is suggested by my MO not the RO or ENT.

I am sorry to hear you and Don are facing this beast again plus another battle in and of itself. (I can't help with the housing unless you need something more in the Dallas area.) I will certainly grant your prayer request for your friend's vacant grandmother's house to be opened to you and Don and add my prayer that He provide you with comfort and peace during such difficult times.

Ed

Thanks for all your loving words and information regarding follow-up CT/PET scans. I have good news and bad news.

First off, the house in LA that was a possibility has become a reality. We can use it, FREE, for as long as we need it. God does send miracles.

Bad news- when they took a CT of Don's chest this past Monday, to map out where they were going to do radiation, they found another tumor. This tumor grew since Jan. 10th, so the cancer in his lungs is active. Because of the wide area (tumors were all in the upper part of both lungs before this new one) they can not do radition, plus they will not be using a new medication (eribitux). Don will begin chemo on March 1st. Not sure which chemo meds they will be using yet, but it will be for 8 weeks, once a week. At 7 weeks they will do another CT scan to determine if the tumors are smaller. If they are not reduced by 50% then the bone marrow transplant for his leukemia will be cancelled.

Please pray that not only does the chemo work but also that his leukemia stays in remission.

The radiosurgery radiation to his brain was done this past Wednesday and now he is just trying to get past the side effects.

This tonsil cancer is HORRIBLE!

Thanks again for all the love you ALL send our way.

Lorie