Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Hi all, I am really hoping anybody can give me some advise on what to do.Went to the infectious disease dr today and got my biopsy result back.I am hep c 1a and on a scale of 0(good) to 4(bad),I am at a 4.In discussing what the next step should be, he said that with the way my liver is now we can start the treatment but it probably would not wipe out the virus totally like it would if I where at a stage 3 liver.He went on to say that if we started the treatment it would only slow its progression down.Another option he said was to not start the treatment and just get checked once or twice a month until the liver starts to show more symptoms,he said eventually I would need a transplant.Im 33 yrs old and at the age of 5 I was diagnosed with leukemia and with the hard doses of kimo is what caused a lot of the damage to my liver. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hi , I'd do tx(treatment) a s a p. I'm waiting for a transplant right now. I tried tx twice in the past but did not respond & was going to try a 3rd time when my doctors said I couldn't because my cirrhosis had decompensated. You've got a chance to kick the dragon's butt, go for it! Even if you don't respond, it will give your liver a break from the virus - while the virus is fighting the tx, it won't have time to damage your liver. Some people have improved their status while on tx, gone from stage 3 to stage 1, so even if you don't respond you're adding years to your liver's life. If I could, I would. After transplant I expect to try tx & see what happens then. My opinion only but you'll find most of us will say the same. SuZie Save the Earth - it's the only planet with CHOCOLATE! From: <cantremembermyemail75@...> Hi all, I am really hoping anybody can give me some advise on what todo.Went to the infectious disease dr today and got my biopsy resultback.I am hep c 1a and on a scale of 0(good) to 4(bad),I am at a 4.Indiscussing what the next step should be, he said that with the way myliver is now we can start the treatment but it probably would not wipeout the virus totally like it would if I where at a stage 3 liver.Hewent on to say that if we started the treatment it would only slow itsprogression down.Another option he said was to not start the treatmentand just get checked once or twice a month until the liver starts toshow more symptoms,he said eventually I would need a transplant.Im 33yrs old and at the age of 5 I was diagnosed with leukemia and with thehard doses of kimo is what caused a lot of the damage to my liver. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hi , I'd do tx(treatment) a s a p. I'm waiting for a transplant right now. I tried tx twice in the past but did not respond & was going to try a 3rd time when my doctors said I couldn't because my cirrhosis had decompensated. You've got a chance to kick the dragon's butt, go for it! Even if you don't respond, it will give your liver a break from the virus - while the virus is fighting the tx, it won't have time to damage your liver. Some people have improved their status while on tx, gone from stage 3 to stage 1, so even if you don't respond you're adding years to your liver's life. If I could, I would. After transplant I expect to try tx & see what happens then. My opinion only but you'll find most of us will say the same. SuZie Save the Earth - it's the only planet with CHOCOLATE! From: <cantremembermyemail75@...> Hi all, I am really hoping anybody can give me some advise on what todo.Went to the infectious disease dr today and got my biopsy resultback.I am hep c 1a and on a scale of 0(good) to 4(bad),I am at a 4.Indiscussing what the next step should be, he said that with the way myliver is now we can start the treatment but it probably would not wipeout the virus totally like it would if I where at a stage 3 liver.Hewent on to say that if we started the treatment it would only slow itsprogression down.Another option he said was to not start the treatmentand just get checked once or twice a month until the liver starts toshow more symptoms,he said eventually I would need a transplant.Im 33yrs old and at the age of 5 I was diagnosed with leukemia and with thehard doses of kimo is what caused a lot of the damage to my liver. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hello , My name is Jon, I'm 56 (B-day coming) 7 yrs post liver transplant, non-responder to treatment 12 times. It sounds like your Dr has a clue about HCV. I have been using Interferon on and off for about 13 years. For the last 3 yrs, My disease levels have slowed due to using the drug. I would seriously think about doing some treatment. The benefits may far outweigh the risks for someone like you. There are other factors that may preclude you from doing the drug, discuss all this with your doctor. Together you may come up with a plan that will prolong your life for years. Jon. > > Hi all, I am really hoping anybody can give me some advise on what to > do.Went to the infectious disease dr today and got my biopsy result > back.I am hep c 1a and on a scale of 0(good) to 4(bad),I am at a 4.In > discussing what the next step should be, he said that with the way my > liver is now we can start the treatment but it probably would not wipe > out the virus totally like it would if I where at a stage 3 liver.He > went on to say that if we started the treatment it would only slow its > progression down.Another option he said was to not start the treatment > and just get checked once or twice a month until the liver starts to > show more symptoms,he said eventually I would need a transplant.Im 33 > yrs old and at the age of 5 I was diagnosed with leukemia and with the > hard doses of kimo is what caused a lot of the damage to my liver. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hello , My name is Jon, I'm 56 (B-day coming) 7 yrs post liver transplant, non-responder to treatment 12 times. It sounds like your Dr has a clue about HCV. I have been using Interferon on and off for about 13 years. For the last 3 yrs, My disease levels have slowed due to using the drug. I would seriously think about doing some treatment. The benefits may far outweigh the risks for someone like you. There are other factors that may preclude you from doing the drug, discuss all this with your doctor. Together you may come up with a plan that will prolong your life for years. Jon. > > Hi all, I am really hoping anybody can give me some advise on what to > do.Went to the infectious disease dr today and got my biopsy result > back.I am hep c 1a and on a scale of 0(good) to 4(bad),I am at a 4.In > discussing what the next step should be, he said that with the way my > liver is now we can start the treatment but it probably would not wipe > out the virus totally like it would if I where at a stage 3 liver.He > went on to say that if we started the treatment it would only slow its > progression down.Another option he said was to not start the treatment > and just get checked once or twice a month until the liver starts to > show more symptoms,he said eventually I would need a transplant.Im 33 > yrs old and at the age of 5 I was diagnosed with leukemia and with the > hard doses of kimo is what caused a lot of the damage to my liver. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hi, my name is - I am also stage four. The doctors chose not to treat me due the advanced stage of my liver. I also had cancer - but am only one year cancer free. You can not get a liver unless you are five years cancer free. Have you been ok since you completed your chemo as a child ? It is a personal decision you need to resolve with your doctor and collecting all the info. It is possible that the treatement could work - also a chance could cause more liver damage. I wish you the best of luck in your decision. God Bless > > Hi all, I am really hoping anybody can give me some advise on what to > do.Went to the infectious disease dr today and got my biopsy result > back.I am hep c 1a and on a scale of 0(good) to 4(bad),I am at a 4.In > discussing what the next step should be, he said that with the way my > liver is now we can start the treatment but it probably would not wipe > out the virus totally like it would if I where at a stage 3 liver.He > went on to say that if we started the treatment it would only slow its > progression down.Another option he said was to not start the treatment > and just get checked once or twice a month until the liver starts to > show more symptoms,he said eventually I would need a transplant.Im 33 > yrs old and at the age of 5 I was diagnosed with leukemia and with the > hard doses of kimo is what caused a lot of the damage to my liver. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hi, my name is - I am also stage four. The doctors chose not to treat me due the advanced stage of my liver. I also had cancer - but am only one year cancer free. You can not get a liver unless you are five years cancer free. Have you been ok since you completed your chemo as a child ? It is a personal decision you need to resolve with your doctor and collecting all the info. It is possible that the treatement could work - also a chance could cause more liver damage. I wish you the best of luck in your decision. God Bless > > Hi all, I am really hoping anybody can give me some advise on what to > do.Went to the infectious disease dr today and got my biopsy result > back.I am hep c 1a and on a scale of 0(good) to 4(bad),I am at a 4.In > discussing what the next step should be, he said that with the way my > liver is now we can start the treatment but it probably would not wipe > out the virus totally like it would if I where at a stage 3 liver.He > went on to say that if we started the treatment it would only slow its > progression down.Another option he said was to not start the treatment > and just get checked once or twice a month until the liver starts to > show more symptoms,he said eventually I would need a transplant.Im 33 > yrs old and at the age of 5 I was diagnosed with leukemia and with the > hard doses of kimo is what caused a lot of the damage to my liver. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Oh ...I'm so sorry you are caught in this decision.I would do as one said here and get a 2nd opinion. It may not change your mind, butit may solidify things and in the process give you a feeling of " doing all you can " . Perhaps there is another way to go as well, myself I am not at stage anythingas far as I know--never had a biopsy, my levels have not been that high--yet--but I feel for you and having hadawful leukemia so young...you are very brave and I will pray for you that all works out for the best. Thankyou for sharing your story.XO-Glenna/Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Oh ...I'm so sorry you are caught in this decision.I would do as one said here and get a 2nd opinion. It may not change your mind, butit may solidify things and in the process give you a feeling of " doing all you can " . Perhaps there is another way to go as well, myself I am not at stage anythingas far as I know--never had a biopsy, my levels have not been that high--yet--but I feel for you and having hadawful leukemia so young...you are very brave and I will pray for you that all works out for the best. Thankyou for sharing your story.XO-Glenna/Seattle Quote Link to comment Share on other sites More sharing options...
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