1st post! I have been trolling this site for information and my own therapy for several months now, so I thought it was time to join in.
My father is a 63 years old and I am his primary care giver (I'm 29). He got Hep C from a blood tranfussion in 1989 (never had to receive treatment for this to date), dignosed with firbosis in March 2009, progressd to Cirrhosis in 2011, and then End Stage Liver Disease November 2012. He was a heavy drinker, and did not quit until March of 2012 (even after the fibrosis and cirrhosis diagnosises). Dealt with all symptoms of End Stage starting in January 2013: ascites, HE, profuse nose bleeds, muscle lose, etc. Had to prove sobriety for >12 months before GI would refer to transplant center. Very healthy heart and lungs, so they considered him a good transplant candidate as long as he maintained his sobriety. Began transplant evaluation June 2013.
As part of transplant evaluation had a CT scan on July 12 (last CT scan 18 months ago at Cirrhosis diagnosis). Results came back July 22. 7 tumorous lesions found. 5 are 1-1.5cm defined lesions. 1 is a 2.5cm HCC defined lesion. And the last is a 7.5cm illdefined HCC tumor that has metastisized through out liver with portal vein intrusion. No treatment options available (per intervention radiologist: portal vein intrusion, larger than 6 cm, bilirubon over 2). He was removed from Transplant program (more than 3 tumors, single tumor larger than 5 cm) next day. Has appt with Oncologist next week, but was informed that options for beating tumors and returning to transplant criteria are most likely not available to him.
So (finally) my question to you fine folks; have any of you dealt with anybody (or you are currently dealing) with similar conditions? How long does someone usually make it like this? Like I said, this more for my therapy with people and families going through similar situations. I am trying to do everything I can for him and let him have his dignity in making his own decisions. He wasn't sleeping at all before and now all the sudden he is sleeping about 10-15 hours per day, super fatigued, nose runs, he drools a little, and his eyes just started having a yellow tint to them (his face or skin does not seem jaundice like).
Any help or comments would be greatly appreciated. Thank you all and I am thinking of you all that are living through these tribulations and sharing your experiences and knowledge with people like me. Thanks again.
Sorry to hear about your dad's situation. I don't know a lot about HCC, but I think that having HCC decreases your dad's chances to survive the transplant, which is why they removed him from the list. No one knows how long someone with ESLD without treatment options has. I personally have known of 3 people who passed away due to ESLD. One lived about 2 mo after failed HCC treatments, one lived about 3 mo after surviving bladder cancer and surgery but died of liver failure due to cirrhosis, and the third lived for 18 mo after diagnosis of lung cancer which had metastasized to brain, liver, and spine. The third person went through about 3 rounds of chemo that didn't work, did very well, but this past June her platelets dropped, she got sicker, and passed away on July 7th. I know that doesn't sound optimistic, bit that's my firsthand (limited) experience. Hector has another story (one of success) to share, so I hope he will jump on and answer. No one can guess how long your dad has, but it sounds like HE, low platelets, jaundice, HCC, and ascites with ESLD, and no treatment options, maybe a few weeks to a couple of months? Hopefully he has a hepatologist who can better answer and help you and your family prepare for end of life and what to expect. There are others on this forum who are more knowledgeable about HCC than me, so I hope they'll chime in. If you don't have a healthcare directive or DPOA for him, you should do that. You can also ask for hospice care to support his needs (and help you and your family). You may also qualify for some disability income, being his care provider. This is a tough time, and my prayers are with you. 63 is still young, and I wish he had treatment options. Again, if he isn't with a hepatologist, he should be, because only a hepatologist can manage the care of someone with cirrhosis, let alone ESLD. I wonder if there are any experimental or trial treatments for his HCC?
I am very sorry for your situation. I have no experience in this so I have no advice other than to say take each day one day at a time. Prepare of course as Advocate has said, that is wise in any case. Although the prognosis does not look good, everyone is different. There are many factors that come into play. A hepatologist is the very best person for your dad to be seeing and asking these questions to. Again, as Advocate has said I hope Hector can come on and give his advice. He is a wonderful success story and just a treasure trove of information. As are others on here. I'm sorry for your entire family. This is a hard thing for everyone to go through, not just the patient. My thoughts and prayers are with you all. Don't spend all of your time worrying about the what ifs and whens and whys...try to enjoy the best you can, the time that you have left together. Don't just make "sick" memories, make some "happy" and "loving" ones as well. My very best to you all. Please keep us posted.
"have any of you dealt with anybody (or you are currently dealing) with similar conditions?"
Yes. I am going through something similar myself and am excluded for the transplant waiting list due to my liver cancer.
"How long does someone usually make it like this?"
I am not his doctor and I can't say exactly. Rather than misspeaking about someone I don't know I suggest you talk to his hepatologist and have him or her tell you what his prognosis is. Be prepared because some doctors have a hard time talking about such matters. Insist that you must know so that you can best prepare for what is coming as your dad's caregiver.
I am very sorry to hear about your dad's prognosis. Unfortunately if what you say is true "the last is a 7.5cm ill defined HCC tumor that has metastisized through out liver with portal vein intrusion." his HCC may also have metastasized to other parts of his body there is no treatment except Nexavar/sorafenib that can extend life for an average of 3 months. "Nexavar/Sorafenib is now considered ﬁrst-line treatment in patients with HCC who can no longer be treated with potentially more effective therapies." Also he appears too ill to receive downsizing cancer treatments by Interventional Radiology because it is not safe to have the the standard cancer treatments in someone so ill. A high bilirubin increases risk of liver failure and death during a liver cancer treatment. (I have struggled with this issue myself and has to wait for my bilirubin to drop before being treated.)
By the way I think you mean "invasion" not intrusion. Which means the cancer spread by going through the portal vein through the blood supply to other parts of his body. Usually it goes to the lungs first and then lymph nodes, adrenal gland and bones. Tumor size and number of tumor nodules are good surrogate markers of vascular invasion. Vascular invasion has been shown to be significantly more common in patients with tumor diameter greater than 5 cm as compared to those with smaller tumors. Tumor characteristics is also an important predictor of outcome.
Please talk to his doctor about the possibility of using Nexavar for your dad if your dad would want to try it to extend his time. I am so very sorry.
I really hesitate to tell you much more as it is your dad's doctor's job to explain what is likely to happen. The reason I know about this is I am in a similar situation as your dad where my cancer is out of control and I am unable to get a liver transplant which is the only cure for liver cancer. Your dad's blood test are similar to mine except for AFP. When bilirubin rises to about 5 skin takes on a yellowish color but this is still not extreme so that is a good thing and indicate his liver is still performing most of its functions though it is advanced liver disease it is not end-stage liver disease.
I will surely help you but please talk to his doctor first. I don't think it is proper for me to speak about such a serious matter any more than I have.
Please support your dad through whatever happens. When a person is dealing with what he is the best thing you can do is show love and kindness and help him in whatever way to can. I hope others will come forward to be there for him too. It is the most we can do for anyone.
Again I am truly sorry and saddened by your father's situation. Please talk to his doctor to learn all you can about his prognosis and what they plan on doing. If you have any question I will be happy to share what I know from my own and others experience with HCC and from the hepatology literature of liver cancer.
Much love to you and your dad.
San Francisco, CA
Hepatitis C, diagnosed with HCC June 1 2011. MELD score with cancer exception points 34, AFP level 600. Excluded from liver transplant waiting list until AFP goes under 500.
Thank you all for taking the time to respond to my submission. I must apologize on one hand for my immaturity and asking a question that no one can answer, especially in a forum where many of you fine folks are battling for your own health and even life. So, I apologize for any insensitivity that I may have shown, as I realize now that this is not the appropriate place for that. I was scared and grasping for anything. So thank you all for you time, patience, and sympathies.
My father passed away on the 8th. We are thankful that it was fast. He had been suffering the throws of uncompensated liver disease for a couple years but did not really suffer to the point that he didn't enjoy life with the exception of only 2 days. In fact, we had just returned from a week long family reunion at the Texas beach just 7 days before he passed, and he drove the majority of the way home!
So thank you all again, and you all have my heart, thoughts, and prayers as you continue your journey to healing. Thank you!!!
I'm so sorry NJ. You need not apologize in any way. You were loosing a parent at the time of your post, I read nothing that you need to feel bad about. Remember there are not any guide lines for this. It seems you did everything you could and sounds like he enjoyed his last few weeks. It is nice he didn't suffer to much. You sound like a great kid! I'm wishing you the very best in life! It will take time but it will get better. Bless you and your family.
NJ I am very sorry to hear about your father. It's really nice to hear he was able to enjoy good quality family time before. Losing a loved one is so difficult and I doubt there is a person here that doesn't understand what you are going through. In no way does your post seem insensitive, these are the type of questions this community frequently deals with whether it's concerning someone on this board, friend, family or their own personal health. I hope the best for you and your family, God bless.
My deepest condolences to you and your family. There is absolutely no need to apologize for anything nor did I see any sign of immaturity or insensitivity. These forums are here for support and information. Sometimes there are answers, sometimes there are not. Sometimes we ask questions that we know there are no answers for, but we still need to ask the question. It all goes with the territory. I'm sorry that you all had to go through this. But I am so very, very happy that your Dad was able to enjoy life up to the last couple of days and that you were all able to enjoy each other and spend that priceless time together. My thoughts and prayers are with you.
I am so very sorry to hear of your father passing. My condolences to you and all of his loved ones.
There was nothing at all the you did wrong in asking your questions. That is the purpose of this forum. It is a very difficult situation that your father was in from your presentation of his illness.I personally didn't think it was appropriate for me to state something about life and death when I don't know the patient personally and I didn't want to give you either false hope or scare you more by stating how fatal liver cancer metastasis can be. I think that it is the doctor's job, as they are trained and experienced in sometimes having to tell patients that there is nothing anyone can do for them, and not something I am qualified to give my opinion on. Just as I won't want others speculating on my chances of beating my liver cancer.
I am very happy to hear your father enjoyed the time he had remaining. Every moment of life is previous and he seems to have given it his all. No one can ask more of a person. I am also glad that he did suffer long. I give him a lot of credit for turning his life around and and doing the best he could under dire circumstances.
I wish you and all of his loved ones peace and good memories of the times you got to spend together.
Thanks for updating us even though I am sure this all has been terribly difficult.
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