After another "dry spell", here I am back with another post on the CC board. Unfortunately, Ben's good ride had had been enjoying now has a few bumps in it.
Just a reminder - after battling Stage IV CC for three years, Ben was diagnosed with Lymphoma in January. His chemo regimen switched to a different protocol to clear that up first as it was quite agressive (but at least curable).
At the end of June - chemo was done and PET scans showed no signs of Lymphoma - and they couldn't really see the CC (although PET scans don't show CC as well as CT scans).
Ben was "chemo free" for the summer which was a nice break and allowed us to focus on a few other things for a change (a little travel and the remodel of our house).
On October 7th we returned to MD Anderson in Houston for a quarterly checkup. Their PET scan revealed that the Lymphoma is still gone (they consider that in remission), but it did show some lesions in the liver again - which they assumed is CC. They did a biopsy of the liver just to make sure it was CC vs. Lymphoma - and the test came back positive.
A couple weeks before heading to MD - Ben was complaining of digestion problems and a bit of stomach pain (so we were a little suspicious, but hoping it was nothing).
It turns out the new lesions were once again blocking his bile duct and he started to turn Jaundice (it's amazing how quickly that can come on - really started while at MD Anderson and got worse over the next few days). Luckily the doctors at MD were able to put another metal stent into the biliary tract to open up the bile duct again.
While we were certainly discouraged about the news - the doctors were still positive. They said they would have been surprised not to see any growth because Ben had been off Gemcitibine since last December - so it had been almost 10 months for the CC chemo (since the treatment for Lymphoma doesn't work on CC). The GI Oncologist at MD (Dr. Shroff) said she wasn't nervous about what she saw....and since Ben has always responded to chemo well - she was hoping it would be the same.
We have since returned from MD - Ben has a plastic stent in his Pancreas that has to come out next week (this was temporary to prevent pancreatitis from the procedure to put in the metal stent). Chemo will start again on November 1st. The doctors have recommended that he only take the GEM (vs the GEM/Cisplatin combo) as it's easier to tolerate then the combination and they consider GEM as the "workhorse of the two.
Ben's spirits certainly don't seem to be the same - and while his jaundice is gone, he does still have some stomach pain - and he just hasn't felt that great since returning (I'm sure the combination of both the physical and mental toll of it all).
So, not the best situation - but certainly could be worse given the circumstances. We are both pragmatic enough that we didn't think CC would be gone permanently through Chemotherapy (as I've never read a case where that has happened), but we were hoping it would stay away a little longer to at least get through a holiday season without chemo.
I'm a little worried this time - how long can the body take chemo? But - luckily Ben is a strong man and hoping he endures it as well this time as he always has.
All my best to all of you.
My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis. He was 51 at the time - and he is now 55.
Don't give up!