Dad diagnosed 3 weeks ago with “untreatable” diagnosis
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Bob…that sounds interesting. Can you tell us more about it? Good luck on the procedure. I share your optimism.
Best wishes,
MarionSome 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.
Hi Bob,
Good question. PDT was my dads specialists preferred treatment for him at that time and he thought it was the best option available for shrinking his tumour. So no, they didn’t do it despite the size of the tumour, they did it believing it was a viable treatment option. Dad couldn’t have surgery due to the location of the tumour, too close to the portal artery and he couldn’t get radiation either as they thought that his liver wouldn’t be able to cope with that. He could have went with chemo if he wanted, but he wanted to try the PDT first and then do the chemo at a later date, but as things turned out he couldn’t get the chemo either as the jaundice came back.
I hope some of that is useful and I hope that your dad gets back home tomorrow.
Best wishes to you and your dad,
Gavin
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?
Hello, Bob & welcome to this wonderful family. I’m so sorry to hear of your dad’s diagnosis & I send my very best wishes for some good news for you. Please keep coming back & talking to us – this is the BEST support site I have ever come across.
Julia
Hi Bob,
Welcome to the site, but I am sorry that you had to join us all. I know what you are going through right now as I went through the same when my dad was diagnosed back in the summer of 2008. His CC was deemed inoperable due to the location of the tumour and radiation was also ruled out from the start. My dad had PDT to try and eradicate or at least slow down the tumour growth with a view to having chemo at a later date, which as things turned out he couldn’t do.
The quailty of life issue is also one that we all had to deal with at the time and my dad wanted that so that was why he went with the PDT and not the chemo from the start. I know all of this is so confusing at first and is tough to deal with, but you are doing the right thing in coming here and looking for information. Here you will get a ton of support from us all so please keep coming back. We know what you are going through and we care.
Best wishes to you and your dad,
Gavin
Dear Bob, we just went through the “balance of life ordeal”. The most agonizing decision ever made in our house. We were told 3 weeks ago that no more could be done for Teddy. We knew it was coming as his last 5 years was a gift. The ONC suggested a Palliative Chemo and it took 2 days of talking, talking and more talking it out for Teddy to make his own personal decision….no more.
He has chosen quality over quantity. He was afraid that he would not be able to enjoy anything at all and for what? An extra month? But this I can tell you, once he made his decision everything changed to a more relaxed and fun house. Yes, we are having fun, that is what living is all about.Bob….Three weeks in a hospital is a long time. I am hoping for your Dad to recuperate enough to be able to go home real soon. Lasix has helped many of our members in reducing the edema and infections are not uncommen with us either. Is your Dad responding to the antibiotics?
This is a tough time for all. Hang in there.
I am wishing for better news coming your way, tomorrow.
MarionThe 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.
Hello Bob. I would like to join Lainy and welcome you. I am sorry to hear about your Dad. These drainage tubes are not liked by anyone, but the do have the important purpose of draining the bile out of the system. Sure wish they were less troublesome, though. The unfortunate leakage has been complained about by many of our members. You are talking of pain. Has your Dad been given medication to combat this? Hopefully, tomorrow will be a better day.
Best wishes,
MarionYou have your hands full. My husband had cyber knife 2 years ago when the CC returned after a Whipple Surgery. I know the tumor must be under 7 cm and not other involvements. His was 7c
m and he had radiation to bring it down. It has now returned and they cannot do cyber knife as its the same area and the tissue will not take it. Guess I would go for that second opinion, hopefully someone will come up with something to get that B.R. count down. Then you can set a game plan. By the way, I do believe that if you send reports to Mayo Clinic or MD Anderson they will try to help you by phone/fax and at least let you know if they feel anything can be done.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.
DearBob, welcome to our family, sorry you had to find us. May I ask how old your father is and where he is being seen? Have you sought out another opinion?
Please don’t give up yet, we have had some Miracles on this site before and they are not going to stop now. As ling as your dad has the fighting spirit I would just see what another doctor says. Please keep us posted and I know more posts will be following. Ane yes, this Cancer is one the biggest surprises there is as usually one does not know anything is wrong until it has already done damage.
But we always remain realistically optimistic.My father was diagnosed with intrahepatic cholangiocarcinoma three weeks ago. The doctor has described it as “poorly-differentiated” Stage 4 disease. Everything was fine until he began to get jaundice and went to the hospital. This was a big surprise for us all because he has been fine before this. The doctors are telling us that radiation is not an option because his mass is on/in most of the liver and the liver is most susceptible to bad effects from radiation. Also, they will not start chemo becuase even though he has biliary drains, his bilirubin level hovers around 10, instead of closer to 1 where it should be. This would make treating him with gemcytabine like pumping him with poison because it couldn’t get out. He also felt that cisplatin would make my dad feel worse and reduce his quality of life with limited positive effects. I’m looking for any feedback as my dad wants to fight this, but nobody seems to want to treat him. The paliative care team is supposed to talk to us tomorrow, but he’s not ready to give up.
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