bob1980
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Some potentially good news. Dad goes in on Thursday for them to feed a small amount of radiation through his biliary drain tubes. This may help the Bilirubin levels to lower (we hope). I guess the good part is there are virtually no side effects even if it doesn’t work, but we’re optimistic.
Gavin, I just read about the PDT. From what I’m reading it seems as though some of the limitations include not being able to treat larger tumors because the light cannot pass far enough into the mass to be effective. Was the PDT performed on your dad despite the size of the tumor or did the doctors deem it small enough for the treatment to be viable?
Well, he had to get a blood transfusion last night because his blood pressure was getting low again. This is the second time he’s had to have a transfusion in the past week. I’m assuming this is due to the tumor and it using his normal blood supply, but I’ll have to confirm that with my doctor. The alarming part is that his Bilirubin shot back up to 11.2 from 8.4 where it had been previously. They seem to think this is directly related to the transfusion and should/could go down again. He’s on track to be discharged from the hospital tomorrow barring any more complications. On a side note, I finally took the time to read his entire chart. On 3-10-2010 certain levels were checked for his diabetes. I noticed his Bilirubin level was at 0.5 and his liver enzyme functioning was optimal. When these levels were checked again on 6-10-2010 he presented with a Bilirubin level of 10 (and jaundiced) and his liver enzyme levels has elevated hundreds of points. It’s just unreal that three months previous there was seemingly no reason to think anything like this could/would happen based on his readouts. Our only concern at that time was that something was going on with his diabetes. I’ll share more as we learn more and thank you for your ongoing support.
P.S. What is the PDT you mentioned?
The only time he’s been in real pain so far has been when he originally had the biliary tubes put in and then again when they had to be replaced. They were replaced because the original set weren’t situated properly and larger tubes were put in as well. Besides that the only pain now is from sitting in a hospital bed for 3 weeks. We encourage him to walk a bit, but his hands, feet, and abdomen have swollen significantly as well. Recently he’s started something called Lasek? that makes you urinate a lot for about 2 hours. This seems to be helping somewhat with the retention of fluid. He also spend a good week fighting off an infection and most food tastes really bad to him at this time. He’s also gone through about 2 or 3 bouts of extremely low blood pressure for which he was given a transfusion each time that seemed to bring it back to normal. It’s still very hard for our whole family to balance the quality of life argument with no treatment at all so far.
My dad is 65 and being treated in Norfolk, VA. Our oncologist says he has dealt with this disease before, but has encouraged second opinions if we feel it necessary. Therefore, while we have faith in his opinion we have certainly tried to look other places. My sister and I went to a radiologist last week who is involved in proton therapy, Cyberknife, etc. and seems to feel that radiation would only be an option if chemo is able to start since radiation is more like site-welding. His cancer consists of a large mass (12x12cm at presentation) in the very middle of his liver and blocking his bile ducts. The cancer is also all over adjoining lymph nodes and there are smaller masses in his kidneys. Our only hope at the moment is that his bilirubin can come down low enough to start some sort of chemo, but beyond that we are really hoping there are alternatives or at least some other ideas. The surgeons refuse to operate on it based on its location. I just feel like if chemo could miraculously start then it could get smaller and become more treatable. Our hope is to get those biliary tubes out of his abdomen since they bother him and leak all of the time. They’ve has to be adjusted once already and that pain alone is nearly unbearable to him. Thank you for your support and further suggestions.
