Aa
any info on trials I could get into?
Hi, I was told by me hepatologist that I can wait for tx. since my labs, ultrasound & biopsy show minimal effect from the virus, I am stage 1, grade1 , and I am genotype 1 (ych)
I just came back from setting myself up w/ a gp since I have insurance for the next 4 months, and she has had family members w/ hep c and she feels I should try to get into a study and treat ASAP, just to get rid of it.
Does anyone know how I would go about this? I guess I have to talk to the people with the hepotologist, it is a gastro practice, but the PA seemed very experienced w/ hep C.
Just looking for some feedback. thx. M4now.
I just came back from setting myself up w/ a gp since I have insurance for the next 4 months, and she has had family members w/ hep c and she feels I should try to get into a study and treat ASAP, just to get rid of it.
Does anyone know how I would go about this? I guess I have to talk to the people with the hepotologist, it is a gastro practice, but the PA seemed very experienced w/ hep C.
Just looking for some feedback. thx. M4now.
I think it depends entirely upon your point of view.
How do YOU feel about it?
Have you read through this board and others --- seen what TX can do to some people?
Do you know what your genotype cure or SVR rate possibility is?
Do you believe that the current SOC is the best option for YOU?
Do you have something to fall back on if you decide to TX and you have the WORST SX?
What do you do if you have problems with the TX?
Once you start - you MUST finish. Can you afford it both mentally and financially - not to mention physically?
How much damage are you willing to have?
What do you believe is the progression of this disease --- and can you afford to wait?
Each person must look inside themselves and research - research - research... Then they must sit down and weigh their options.
Some may believe in Hard Fast Aggressive approach as the best approach. Some may find the wait and hope for a better SOC.... to be better for them.
No one here can tell you what you need or should do. That's too much of a burden on another individual. For none of us can tell you how successful it will be for you --- or how hard or easy it will be for you. Or if there will be something better shortly.
None of us can tell from your brief description of yourself what you should do.
I say get your 2 doctors together - let them discuss it.
Your liver doctor is probably more in tune with your liver. Your GP may be more in tune with You.
There may be a happy medium. But you must choose for yourself.
Make a checklist of your questions and go searching for answers... All of us had to choose.
Ask both of your doctors what the possible advantages or disadvantages are either way. Ask them how many people they've treated with HCV --- and what their SVR rate is --- and what genotype has SVR'd better --- ask what they think about side effects --- and how they intend to treat you for: nausea, low white blood count, aches, pains, headaches, brain fog, and other side effects that may or may not happen.
Then sit down and think about it.
Make your choices at that point.
Both major pharmaceutical companies have assistance programs for the medications.
Your doctors may even have a sliding scale...
You have to know some side effects may last long after a year...
You have to know --- this could be the hardest thing you've ever done.
But it could be worth it for you.
It was for me --- I was very lucky.
Meki
How do YOU feel about it?
Have you read through this board and others --- seen what TX can do to some people?
Do you know what your genotype cure or SVR rate possibility is?
Do you believe that the current SOC is the best option for YOU?
Do you have something to fall back on if you decide to TX and you have the WORST SX?
What do you do if you have problems with the TX?
Once you start - you MUST finish. Can you afford it both mentally and financially - not to mention physically?
How much damage are you willing to have?
What do you believe is the progression of this disease --- and can you afford to wait?
Each person must look inside themselves and research - research - research... Then they must sit down and weigh their options.
Some may believe in Hard Fast Aggressive approach as the best approach. Some may find the wait and hope for a better SOC.... to be better for them.
No one here can tell you what you need or should do. That's too much of a burden on another individual. For none of us can tell you how successful it will be for you --- or how hard or easy it will be for you. Or if there will be something better shortly.
None of us can tell from your brief description of yourself what you should do.
I say get your 2 doctors together - let them discuss it.
Your liver doctor is probably more in tune with your liver. Your GP may be more in tune with You.
There may be a happy medium. But you must choose for yourself.
Make a checklist of your questions and go searching for answers... All of us had to choose.
Ask both of your doctors what the possible advantages or disadvantages are either way. Ask them how many people they've treated with HCV --- and what their SVR rate is --- and what genotype has SVR'd better --- ask what they think about side effects --- and how they intend to treat you for: nausea, low white blood count, aches, pains, headaches, brain fog, and other side effects that may or may not happen.
Then sit down and think about it.
Make your choices at that point.
Both major pharmaceutical companies have assistance programs for the medications.
Your doctors may even have a sliding scale...
You have to know some side effects may last long after a year...
You have to know --- this could be the hardest thing you've ever done.
But it could be worth it for you.
It was for me --- I was very lucky.
Meki
Hi,
Which doctor (no pun intended) knows what their talking about? the GP says treat ASAP, the hepatologist and gastro PA say its up to you, you can wait and get monitored in another year. So what to do? I was psyched about not doing treatment based on everything I've read, my circumstances and the fact that I'm genotype 1 etc. and was offered the option. So thats my question I guess should I or shouldn't I? I guess only I can answer that, but I did want to get a little feedback from y'all.... thx.
Which doctor (no pun intended) knows what their talking about? the GP says treat ASAP, the hepatologist and gastro PA say its up to you, you can wait and get monitored in another year. So what to do? I was psyched about not doing treatment based on everything I've read, my circumstances and the fact that I'm genotype 1 etc. and was offered the option. So thats my question I guess should I or shouldn't I? I guess only I can answer that, but I did want to get a little feedback from y'all.... thx.
Well merryBe left you the hyperlink to the clinical trials, if you live near one of the study centers and you are accepted you will get treated for free. Oh, sorry about that there is a small fee for paper work copies, it's just around 10 bucks. My point is your doctor knows what their talking about and has pointed you towards a good option. I am waiting to receive a phone call to get into a study at UCD in CA. You need to go to the link and type in a teaching hospital near you in the search option. It's not a big deal and it doesn't take much articulation, it's really easy as they are recruiting now or soon. Anyway's that will take care of the money situation and your treatment. Your insurance loves it, cause they don't have to do anything further except send copies of your medical records. If you need more information, read the archives. God Bless
I dont have any medical problems other than HCV that I know of. So, I hope to do treatment within the year. I cant imagine that the age factor would be that different within that time. Thanks for the good luck... M
MerryB I am looking at that site thank you,, all I have to do is decipher what it all means, study, study, study, you all are light years ahead of me.
MerryB I am looking at that site thank you,, all I have to do is decipher what it all means, study, study, study, you all are light years ahead of me.
my only concern would be the age factor. Do you have any other medical problems? Good Luck in what you decide.
Due to my circumstances, unemployed, paying for ins. out of pocket for the next 4 months, then 0, ummm stage 1 grade 1, genotype 1, ALT 45,,, I'm considering waiting, hopefully I'll be in a better situation in a year, or less (karma willing) I feel OK, I'm taking care of myself, (can do better, & will) and I think I will request a liver panel & ultrasound before the insurance runs out. My hepatologist said it was up to me and to recheck things in a year. My GP says treat now. I really dont see how I could treat now...if I dont really really have to. If I had good insurance, good job, I'd go for it. Right now I have minimal damage, and a life situation that is not conducive to treating.. Also looking for a job, at 58 yrs. old, I need to not have the possible side effects to deal w/ as well... What do you think? (be nice) .. thx.. M4now
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