Sorry that we’ve been such poor correspondents but we’ve been pretty busy lately. Where does the time go? (The reason that you keep hearing this excuse is that it is still true.)
As you know Janet had a PET/CT scan on the 30th. 45 minutes in the machine with catheter and all. A very elaborate scan. Then Janet saw her doctor on Thursday, Aug 2.
The good news is that the tumors that were seen in the PET scan from Dec 28, 2011 are gone! They were around, but not inside, the liver and in a few other areas. They seem to be gone. The other news is that her CA125 has come up some, but inflammation and many other non-cancer things can cause that. We suspect that her ostomy is not infected, but causing slight abdominal inflammation and causes the higher readings. They also did an HE4 test, but it will be another week or more before that comes back.
Neither the CA125 nor the HE4 is very reliable, even though we thought that the CA125 for Janet was usually doing what we expected. I have seen government websites that say that 80% of the CA125 readings are wrong, and so on. They do put more credence if both the CA125 & HE4 go the same direction.
There are, as I have mentioned about 8 different companies making CA125 tests and they all use different ways of trying to say the same thing. I saw one government study where a woman had been in remission for 55 months, but then her CA125 began to rise and went quite high. BUT, they did the test using another lab, with another method and got the original normal, very good numbers. The culprit turned out to be human ant-mouse antibodies in her blood. One in 40 people is thought to have them, though I have no idea why or how the woman got them after 55 months. That report is
But, more wonderful news is that Janet is seeing a high ranking surgeon Mon, Aug 13, about having her ostomy reversed. The surgery may happen as early as the end of August.
Once it is reversed, we will wait several weeks to make sure that there are no bowel obstructions, etc and then we will go to the Baltimore / Washington, DC area to see some friends for about a week or two and then back to Alegria!!
On another happy note we just had some Australian friends visit for 5 days. We met them in Finike, Turkey and since we last saw them, they finished their circumnavigation (in 3 years) and sold their boat. Then, they flew to LA and drove to Phoenix where they bought an RV and are now touring the USA. We had a great visit.
Update: Just got an email from the Aussies and he is in the hospital with broken ribs from a fall on the Olympic Peninsula. Major bummer!!!
On yet another happy note, the weather has finally gotten to be summer like and we are really enjoying sweating at last!
Update: the warm weather only lasted a couple of days. But, we hope to see more someday.
Dave & Janet