Well I saw my new GI doc.She was amazed that I had not been retreated long ago since I am genotype 2, relapsed, and last biopsy in 1998 showed grade 3/stage 2 at that time before treatment (not pegylated, just reg interferon + riba). I had requested to be treated again 5 yrs ago but prior doc said I was not a candidate, refused my request. So now new doc says may have advanced cirrhosis since AST higher than ALT which is slightly higher than normal. I had my ultrasound and only significant finding was adenomyomycitis in gallbladder. Hoping that's the explanation for rise in AST. I understand that to be benign. Liver actually had nothing abnormal seen. Waiting for biopsy still. But doc says there is a clinical trial in SF using protease inhibitor in Genotype 2. Unless the biopsy shows bad cirrhosis in which case, I get referred for transplant. My prayers were heard about the ultrasound. Please, those of you who believe in power of prayer, help me pray for good results from biopsy. I believe I will surprise everyone and be healthier than predicted. Gratefully, I do not walk this path alone.View Thread
So much appreciated. I don't know what I would do without the support of this community. Complete strangers who care....awesome. Thanks for the resources. I will check it out. Thanks soooo much.View Thread
Hi all. Posted recently on denial not the best option.
Here's the update. I saw my new doc yesterday and the news is discouraging. I was so hopeful about the triple therapy but I am told my 2B genotype excludes me from this option. Since i was grade 3, stage 2 in 1998, and my AST is now higher than ALT, plus have mixed croglobulinemia, she suspects I have cirrhosis. Will be doing biopsy and ultrasound, labs to be done 5 days prior to biopsy. She says if cirrhosis is not too advanced, I can retreat with combo. First treatment 1999 with non-peg interferon & riba. Cleared after 6 months, relapsed 6 months later. She also said if cirrhosis advanced, I will be referred for transplant. She mentioned clinical trials as another option.
I had been so hopeful. Now I am in a state of mind I can't describe.
Anyone have any other ideas or know of trials for 2B? I am in Sacramento/SF area.
Reaching for my bootstraps....again! I must beat this. I just became a great great Aunt and I am only 58 yrs old. Still working and love life! God, please hear my prayers.View Thread
Wow. Awesome to hear from you! Wondering if anyone was still around. I remember you also but must admit the memory is not quite as sharp as it used to be for details. Thanks for the support. Looks like I need to take another shot at clearing this with tx. The cryo and rising lymphocytes with enlarging glands has me very concerned. I see the GI doc soon and will get that ball rolling. I am pretty sure I will be staying in closer touch. So much has happened in the last decade. I've been quite ignorant but it's time to get informed again. Plus, as you say, these boards with the love and support can be life sustaining.
I'm hoping you are doing well. We both remember when the "experts" wouldn't use the word "cure" & now it seems I have read that word more than once.
Hope is the best medicine! I hope to hear from you again.
Thanks for your kind words and my best to you.View Thread
Your advice is much appreciated. The experience shared here is excellent. It was until the rheumatologist (who i saw eventually for arthritis) ordered complete work up that the mixed cryo was discovered. I wish I had been on top of this. I don't like the prognosis if NHL turns out to be the case. My siblings all have autoimmune disorders. I kept saying I responded to treatment like someone with autoimmune disease. I wonder if that was a clue.
Thank you again. These responses help a person to not feel so alone in this battle.View Thread