Retreat or not Retreat

[ohio nurse]

Hi all , I have posted in past any got lots of good help but find I need to make major decisions again. I am 1a grade 2 stage2 and failed 52 week treatment 1.5 yr ago, now developed enlarged spleen and doc wants me to consider retreat. I didnt do well at all with sides and the thought to do it all again scares the s--t right out of me. I am wondering does anyone know why he would change from  wait for new treatment to do it again now??? I am thinking the platelet issues and does anyone have info on removing spleen to wait longer for new treatment?? I have 2 weeks to make decisions. I just dont know what will be If I choose no..

[ohio nurse]

Thanks for the input. I agree that I need a lot more info from the Dr (hepatalogist) a Ohio University. I have not had a biopsy since before treatment about 4 years ago. No labs for 8 months. the only thing different has been the ct of liver and I was only told that The spleen is now enlarged. I am making assumptions on the spleen and platelets issue. I was stunned at his change of approach and didn't ask a lot of questions other then what about the treatment he proposed in 3 years to which he said If you were older even 70 ( i am 53) A wouldn't do it but I really feel you need to try treatment again and 3 years is too long to wait.He talked of using infergen this time but I have read and the side effects seem the same and it took me a year to get over the interferon. I feel I aged physically and psychologically in a way that I will never get over. I plan to ask for more labs and new biopsy I had elevated AFP on last tests, the reason for the ct but no tumors. I wish someone could tell me how long I have before I actually get to sick to enjoy life if I choose not to retreat. That would be helpful in deciding.

[Bill1954]

“I am wondering does anyone know why he would change from  wait for new treatment to do it again now???”

Without further information, I’d guess that he’s probably concerned about your spleen being swollen. This is often one of the signs of cirrhosis; the spleen sequesters platelets, causing splenomegaly. You also mention something about “platelet issues’; that can also be a concern, as you probably know.

When was your last biopsy? I would think a recent biopsy would be in order to drive a treatment decision; unless your doctor already believes you are cirrhotic. If that’s the case, then it might be the time to move; once the liver begins to decompensate, any treatment, even one with the new protease inhibitors, would be very risky.

I’d think the best thing to do is listen to your doctor, and ask him what data he has that’s changed his mind recently; no one in here is privy to your medical records, and can’t guide you through these decisions properly.

Best of luck to you—

Bill  

[copyman]

Something just doesn't seem right here. why are you being rushed into making a decision? How long ago did you have the BX that showed 2/2 ?  What does your doctor plan to do different this time that 52 weeks didn't do? How do the rest of your labs look? you should be monitoring the other blood markers not just platelets to see if your liver is getting worse. These are the questions your doctor needs to answer or get copies of the labs.
Personally I would not treat now even with an enlarged spleen, and I would not have it removed! I would wait for the new drugs coming out by 2011 or maybe sooner for relapsers / non-responders like yourself.
If you are not seeing a hepatologist make an appointment with one. No matter what type of doc you are seeing if they are trying to rush you into treating again you need a new doc. Unless of course there is more to the story. If you are still a 2/2 then with good diet, exercise and NO alcohol you should be able to wait for the new drugs with no problems. Best of luck whatever you decide