Not surprising, he was pushing TX. Also pushing for biopsy, which I am highly resistant to, though I know it does give important info.
He said the new drugs won't have a higher success rate than the current TX (70%) and will have higher bone marrow toxicity. (Though of course no inteferon)
He seems like an ok guy. A big plus is that he didn't ask me how I got it. But when I asked about just not treating and dying of old age, he said probably not since I got infected so young.
Current plan is to do a baseline MRI (THis will spot cancer and even noncancerous legions.) Then do blood tests for tumor markers every 6 months if I don't treat. This will help find cancer early.
He siad none of his pts had permanent sides from TX; one woman had thyroid problems during. But it's not a huge sample -- 30-40 people. Still I think there are probably lots of people w/minimal sides and that the people who need support from DS would be the people in worse shape. OTherwise people would be working and not online.
One last q -- a year ago my platelets were 133 (140-400 is normal) I know that could be from the HCV. Is there anything else it could be from? ANd is there a way to raise them?
I'm feeling less certain about TX, though my husband reminded me that I had decided to do it for good reasons. I'll start w/ the MRI and bloodwork and go from there.
I'll just keep asking for guidance about the right next step.
He said the new drugs won't have a higher success rate than the current TX (70%) and will have higher bone marrow toxicity. (Though of course no inteferon)
He seems like an ok guy. A big plus is that he didn't ask me how I got it. But when I asked about just not treating and dying of old age, he said probably not since I got infected so young.
Current plan is to do a baseline MRI (THis will spot cancer and even noncancerous legions.) Then do blood tests for tumor markers every 6 months if I don't treat. This will help find cancer early.
He siad none of his pts had permanent sides from TX; one woman had thyroid problems during. But it's not a huge sample -- 30-40 people. Still I think there are probably lots of people w/minimal sides and that the people who need support from DS would be the people in worse shape. OTherwise people would be working and not online.
One last q -- a year ago my platelets were 133 (140-400 is normal) I know that could be from the HCV. Is there anything else it could be from? ANd is there a way to raise them?
I'm feeling less certain about TX, though my husband reminded me that I had decided to do it for good reasons. I'll start w/ the MRI and bloodwork and go from there.
I'll just keep asking for guidance about the right next step.
I have done two treatments that have both failed.but I have cirrhossis and I am geno type 1a,so the odds were against me from day one..(i did not know this at the time though)but I must say my viral load was well over 5 million and got down to 12,so close.I was a responder,but not succsesful.
Every one handles treatment different.I was not CC blood which if you are not your chance of sucsess is very low,I am CT withinterferon.
I had really bad sides and still now after 3 months my stomach and bones are still in pain,but slowly getting better.
Some people can get through TX with little problems and some can be much worse then I was.I had to stop work,I was a mess mentally and physically.
I would look at your at your geno type,if you have cirrohssis,your blodd type if CC or not and if you will have support.
I can not say to go for TX or not,but atleast be educated about your chances.
Good Luck
Les
I am sorry if i have thrown a spanner in the works...
I am pretty sure that CC is the one with higher succes rates,but please get a second opinion,I dont want to tell you which way to go.
This information is not hard to find out...PLEASE get a second opinion off another gastro specialist.
You are right no one can tell you,if TX will work on you,but atleast you can no the odds...not being CC is one.then being 1a is another,then having cirrhossis is another..
Please get another opinion.
Best Wishes
Les
I
The doctors I saw here, one shamed me for not coming in sooner and told me that I had cirrhosis back in 2005 according to my labs then, but all she was really doing was trying to get me to give up on myself. Even though my biopsy results said, advanced bridging fibrosis with possible early cirrhosis. OK, if it was "possible early cirrhosis" could it have been present 6 years ago? Wouldn't it have progressed to actual cirrhosis in 6 years?
The doctor from India, who advertises himself as "The Gut Whisperer" put on a show for me, and tried to "win me over" by saying Tx was so safe he would put his grandmother on it. Nothing was said about the dangers or side effects or toxicity for the bone marrow. And I've heard the stories about the other 2 doctors here to make me think that they only care about the money as well. Sad when one lives in a big city, you would think you could find one good doctor.
Also, sort of OT, does anyone know how to fight w/out all the chemicals? What i mean is, there's a horrible change to my daughters' schools that they're trying to force. Tonight I went to a meeting about it and I can feel the adrenaline and anger still in my body. Those chemicals aren't good for me, but I don't know how to fight this lying and bull without getting into that state. I could barely control my anger as this guy did his B.S. presentation. I was trying to breathe slowly and deeply but it didn't help. A lot of the time I've stepped aside from local politics because I havne't learned how to be involved without getting into this state. But this is my kids and it's too important. We'll probably lose but I have to try. I just want to do it w/out adrenaline and cortosol.
Platelets being low, according to the female dr I saw, is caused by liver damage. Your's are pretty good. Mine have dropped from 110 in 2005 when I was 52, to 89 last time I tested a year and a half ago. Still not a big concern, and I don't really notice any ill effects, such as easy bruising. I think maybe it helped with symptoms of cryoglobulins, as it thinned the blood??? I don't know for sure. All's I know is back in 2005 I got serious edema from the knees to the ankles accompanied by bright red blood spots just under the skin. It's caused by the blood getting thick with the virus, making it into the capillary beds and then pooling as it gets too thick to return to the heart via the veins. What caused it was the virus, what triggered it was staying up all night, then running around all day. When I got home, and took my jeans off, I freaked.
I took shark liver oil for over a year, didn't help any. There is a drug for low platelets. I don't want to take drugs.
Sorry you got so stressed out at the school. I know how you feel. I got really stressed out Sunday when my hubby said something that seemed to put a limitation on my cherished Sunday hike and I told him so. He got stressed about me stressing, and I got stressed about that, and pretty soon our evil twins were duking it out. I got so mad I wanted to break things. I don't know why I get so angry, but I think I just feel so much like I'm in a little boat in the middle of the ocean, and please, don't make waves. Sudden changes feel like tsunamis to me.
I paid $135 CASH to see that Gut Whisperer, only to get "courted" for an hour. None of my questions were answered, they were all defered to the next visit, which of course never happened.