Signs of end stage of liver cirrhosis?

  

     Mailman: I had been wondering what had happened to you. Sometimes people leave the forum , never to be heard from again.  It's really great to hear you got your transplant. Sounds like everything is going well. When your feeling better I'd like to hear about the whole thing. I get the feeling I will be one of those that does great for awhile, then turns for the worst. Well I shall post to you again soon,---------------june

Hi to all and thanks for your continued posts and prayers. June-- please don't ever feel as though you will be one who goes south. Remember that POSITIVE thinking is a vital tool in the recovery process. I'm now off the pain meds except for bedtime to help me sleep thru the night. I am down to 151lbs from 176 when I went in for the transplant. Guess it is the healthy food. Please continue to pray for the family of the donor. I cannot comprehend the loss they are feeling. I pray that they will be comforted in the knowledge that their loss gave life to others, possibly drawing families closer together than ever before. As is said in scripture: No greater gift can be made than that of a man laying down his life for his fellow man. I am truly blessed. Delivered by the mailman.

Mailman,

I am so happy for you!!!! Kudos to you and I know you are feeling way better.  My brother is not doing very well.  He got out of the hospital and went back to drinking again, and missed a lot of appointments.  His wife called me today and he sounds like he has had a stroke.... stuttering, repeating himself over and over, not making sense...but would not let us take him to the hospital.  He did , however, call our cousin instead of his brothers and sisters and have him to take him to the VA in Little Rock.  They are on their way, and I am sure we can use all of your prayers.  Thank you so much for all of your support.

Calla

Calla, so sorry. Will be praying for your brother.
Hang in there.

Thank you guys all so much for all of the kind words. They are much appreciated. I just learned that he didnt go to the hospital like he said, made the people turn around and take him home..... I dont know what we are gonna do with him, but I am getting ready to hand out some tough love. :)

Leslie,----- Thank You!!!!!!! After reading your post, tears started to flow from my eyes. This young man and his family have been on my mind and heart since day one. I'm sorry for your loss but thankful that you turned your tragedy into hope for others. I continue to lose weight but the docs tell me I'm doing real well. I have to see the oncologist next week for a review of the pathology report. They mentioned some possible chemotherapy as a precaution treatment in case the cancer was not isolated to the 3 tumors inside my old liver. Oh well, just another pebble in the shoe. I refuse to allow this to hinder my recovery. I believe that GOD has a plan for me and I know HE will not abandon me after bringing me this far. Hang in there Calla. Dish out that tough love and never give up hope. Keeping you all in my thoughts and prayers. Delivered by the mailman.

Hi to all. Well it has been quite some time since I have visited the forum. I went to see the oncologist on 3/12 and was told that my old liver had 3 cancerous tumors. 2 in one lobe and one in the other lobe. Unfortunately, one of the tumors was invasive to the small lymph and vascular vessels. This means there is a chance that there are cancer cells still alive in my bloodstream which could reform as another tumor. They are suggesting I undergo FLAP chemotherapy as a preventitive measure. However, they are not able to give me any data which would suggest that this therapy would help prevent it from reacurring. They simply do not know. It would be for 6 months followed by at least 3-6 months to regain strength. There are alot of really bad side effects as this is a really agressive form of chemo. They want me to make a decision by the 27th so they can begin treatment the following week if I decide to do it. Right now, I'm not sure what to do. What makes the decision difficult is that I'm doing so well in my recovery from the transplant that I don't want to jeopardize it. We are going to Johns Hopkins in Maryland for a second opinion probably early next week. If any of you can give me any info, thoughts, or opinions, I would surely welcome them. Please continue to pray for the family of the donor as they are constantly on my heart. Nancy and I appreciate all your prayers. GOD bless all of you. Delivered by the mailman. but

Grandma,

           Primary liver cancer tends to reappear in the liver instead of other organs. If it does they tell me there is basically nothing they can do. They can start to treat it then but it is generally not effective. That is what has me confused. If chemo will not help later, how is it supposed to help now? They cannot give me any stats to suggest that treatment will be beneficial in this case. I am leaning towards not having it done and just relying on GOD and his will. Right now I feel healthy as a horse. My son and daughter-in-law brought my grandchildren down yesterday for a visit. IT WAS GREAT! I have not seen them for 2 months. I am doing alot of walking and getting out to the stores again. Still get tired, but not as quickly. I am hoping to be able to get back to work by mid May or early June. Good to hear from you again. Have a wonderful Easter everybody. Delivered by the mailman.

Mailman, it's wonderful to hear from you and to know that you are doing so well post-transplant.  I'm sorry about the remaining cancer cells.  I somewhat know how you feel...I seem to get past one hurdle and regaining my strength, etc., then here comes another!  Right now it's a second incisional hernia that will need repair.  Anyway, re: the question about how the chemo would help now:  As far as they know, your cancer cells are in the blood stream and not in your liver yet.  So it would be a preventative measure.  I'm not sure I would go for it, either.  As you say, if a tumor recurs, it would likely be in the new liver...though it could reappear in your lungs.  When they scan me, it always includes the lungs.  I think you are wise to get a second opinion, and Johns Hopkins has a great reputation.

The good news is that they are keeping a close watch on you, so if a cancerous tumor should reappear, they would likely catch it in the early stages.  I had a study drug (actually a form of radiation), TheraSphere, prior to surgery, as my tumor was so large and had metastasized to the inferior vena cava.  The TheraSphere shrunk the metastasis back into the original tumor and shrunk and killed the original tumor...but the whole lobe was removed as it was in such bad shape, and also as a precautionary measure.  The results of this study said that 71% of the participants responded favorably.  So I am one of the lucky 71%.  When I started treatment, I was facing a death sentence, so I feel VERY fortunate.  I never gave up hope, though, and neither should anyone else--until the very end when it becomes obvious there's nothing else to be done.

The parents should feel very proud that their unselfish donation of their son's organ has kept another alive.

Let us know what Johns Hopkins has to say, and continued blessings for you!

Hugs,

Connie

Hi to all. It has been awhile since my last post and alot has taken place. I have decided not to undergo adjuvant chemo therapy. My decision is based on the fact that there is no data to suggest it helps, the side effects are terrible, there is nothing to suggest that the cancer is there, my blood works are terrific, and I am recovering from the transplant surgery extremely well. I was told that chemo would rob me of approx. 9-12 months of quality living for a possible chance at living longer. Since the odds were virtually a coin toss, I have opted for quality of life now. If the cancer should return, I was told that it would probably come back very aggressively and would be fatal in less than 1 yr. They said it would not be treatable should it return. OH WELL! As far as I am concerned the cancer is NOT there and WILL NOT return. I return to the hospital in 3 weeks for another check-up, but will have blood work done every week at a local lab. I am being weened off the steroids and anti- rejection med (prograf) slowly but consistently. My wife and I celebrated our wedding anniversary this past weekend at the Ocean, walking along the beach, watching the sunrise over the water, having a wonderful dinner and priceless time alone together. It does not get any better than that. My prayers go out to all of you and to the family of my liver donor. Delivered by the mailman.

Hi to all. I haven't really seen much chit-chat on this board for a while so I pray all is well with everyone. You know, I think we should stay in contact with other people thru this helpline even when we are feeling good . We should let others know we are doing well so that maybe it will bring some hope into their lives. Not everybody who reads these messages responds, so it is important for us who do to let them know there is hope and recovery. That being said, I AM FEELING GREAT! I am reading a book called "Tuesdays With Morrie" which is about a man dying from ALS. WOW. How inspirational it has been for me. I highly recommend it for anyone. I would like to quote you some of his teachings, but that would deprive you of the blessing of reading it for yourself. As always, my thoughts and prayers go out to all of you and to the family who so graciously donated their loved ones liver so that I may live. Have a Great day and GOD BLESS. Delivered by the mailman.

Grandma,
I'm sure your grandaughters had a blast and greatly appreciate Funny Papa's Garden. Keep planting. Delivered by the mailman.

Laura. Welcome to HealingWell. I can certainly understand your concern about transplantation but I think you're putting the cart before the horse right now. First she will have to be evaluated and the stage of liver disease is determined. They will make that determination based on labs and other tests as well as symptoms she is displaying. All this takes time so there are no quick answers or solutions. I would suggest that you educate yourself as much as possible about liver disease, symptoms, and treatments. This is especially important if you are going to be your sister's advocate. Read as many of our old posts as possible as there is a wealth of information in this forum. Also google with your questions. In the meantime make a list of all your questions to ask the Dr. Normally, the first appointment is scheduled for a lengthier time then her following appointments will be so he/she should take the time necessary to respond to your questions. Also, ask for copies of her labs and other tests so you can stay on top of it all from one visit to the next. A liver biopsy may be ordered which is common for evaluation as are CT scans and/or MRI's. Diet should be discussed as dansbrother mentioned. If her abdomen is distended (swollen) they may want to drain it. If it is mildly distended they will probably put her on diuretics (water pills) to make her pee more. Whatever the circumstances are they will treat her for each symptom. If she is confused as a result of her ammonia level they will put her on Lactulose to assist in eliminating the toxic effects of the incresed ammonia. The blood tests will tell them alot right away so you can expect her to start on some medications. Please feel free to post as often as you want to. The members of this forum are absolutely wonderful, caring, and well educated about this disease.