Aa
fibroscan 34
Not been here for a while. Best wishes to old friends.
My recent test came back.
Fibroscan 34KPa
ALT 88
AST 95
Grade 1 varices at mid esophagus
V/L.......didn't do that one, 9 months ago after tx it was 30,000
Other bloods are within normal range.
Ultrascan pending.
Doctor has ruled out interferon as too dangerous at this stage
Like to hear from anyone who has or had a similar situation or knew someone who does/did.
My recent test came back.
Fibroscan 34KPa
ALT 88
AST 95
Grade 1 varices at mid esophagus
V/L.......didn't do that one, 9 months ago after tx it was 30,000
Other bloods are within normal range.
Ultrascan pending.
Doctor has ruled out interferon as too dangerous at this stage
Like to hear from anyone who has or had a similar situation or knew someone who does/did.
Best Answer
Thanks to all for your input, I will do whatever is possible and practical in the circumstances.
I agree with Eureka - the time to act is now. When I started tx in Jan. 2009, the odds with SOC for those like me with cirrhosis were seemingly dismal -anywhere from 10-30 % depending on what you read. But when you get to this point (Stage 4), I had to change my mindset and instead of "only" 10-30%, it's 10-30% more than I had at the time.
Back then, our only chance to increase the odds was to enhance the meds by doubling them (in my case) for at least the first 12 weeks, then extending to 72. I believe the odds have greatly increased with the new meds, even for cirrhotics.
It does take some serious contemplation and, Murari, I wish you well in this. It's such a personal decision and one that's dependent upon where we are on life's journey.
Pam
Back then, our only chance to increase the odds was to enhance the meds by doubling them (in my case) for at least the first 12 weeks, then extending to 72. I believe the odds have greatly increased with the new meds, even for cirrhotics.
It does take some serious contemplation and, Murari, I wish you well in this. It's such a personal decision and one that's dependent upon where we are on life's journey.
Pam
i appreciate your blunt and kind words my friend and i know murari does too altho it panics one at first. can anyone help assess his actual chances by percentage of clearing virus by retreating. about 8 mos ago he said 15% which is so low that the watch and wait seemed better. i feel that chances are higher. not sure about new drugs but read that peginterferon alpha2b plus RBV could give a 40% chance to geno 3 retreat/null responders. if murari went to england for a few months to treat and returned home after 12 weeks if not an early responder, maybe he would revisit the idea. he/we are open to realistic and specific information that can be documented and really appreciate all the great input. he said it is hard for him to do the research so i offered to help get the ball rolling. best to u eureka and all who suffer and still take time to help others, bless u, babs824
The "shopping around" is all well and good... but keep in mind nadolol isn't the only item on the shelf. The objective of the medication is to heal or maintain, and there are other beta-blockers that work too (propanolol is another that comes to mind) to relieve portal hypertension. Compared to treatment meds, I believe they are for the most part reasonably priced, and do the same job... doesn't have to be nadolol. (However, you do want to make sure it's not a selective beta-blocker like those they prescribe cardiac patients, because that doesn't help the liver.)
To be blunt, the combination of varices and bleeding concerns are making your doctor conservative, but your liver disease is NOT. Willing is right: it is time to act, my friend. Don't only shop around... it's time to buy... and you need to realize that if it means you have to travel you should not hesitate.
Your body is sounding alarms, and though Buddism may allow you to tune out those sounds, it will not stop the liver's deterioration, and you're on the brink of a precipe -- you need to start putting in some anchor holds because the incline only gets more steep before the drop. Mastering the art of waiting is only worthwhile when it's something worth waiting for, and this is NOT.
The doctors are being cautious because you are now a liability... get some traction, murari, start the walk uphill and get yourself some real medical care, whatever it takes. The virus is tipping the scales their favor and not yours; and though your friends still hold you in favor, time is no longer on your side. Start seeking more now... you will want it later. Think hard and take care. ~eur
To be blunt, the combination of varices and bleeding concerns are making your doctor conservative, but your liver disease is NOT. Willing is right: it is time to act, my friend. Don't only shop around... it's time to buy... and you need to realize that if it means you have to travel you should not hesitate.
Your body is sounding alarms, and though Buddism may allow you to tune out those sounds, it will not stop the liver's deterioration, and you're on the brink of a precipe -- you need to start putting in some anchor holds because the incline only gets more steep before the drop. Mastering the art of waiting is only worthwhile when it's something worth waiting for, and this is NOT.
The doctors are being cautious because you are now a liability... get some traction, murari, start the walk uphill and get yourself some real medical care, whatever it takes. The virus is tipping the scales their favor and not yours; and though your friends still hold you in favor, time is no longer on your side. Start seeking more now... you will want it later. Think hard and take care. ~eur
im glad u are back asking questions here as i feel the most updated research is always available thru these folks to say nothing of support. i am aware of the reasons u took a break but i wonder if any of the new meds might be available for geno 3. i have not been around much lately but i hear such positive things about the new tx and the short duration. i wonder when your insurance kicks in? i believe u have several years to go? im still collecting bottles and will send u a check soon for $100. which may help with the nadolol. from what i gather your recent tests shows no negative changes in the past year? if this is so i see that as a very positive thing altho we all know that progression is not linear. the folks here like hector and eureka can surely advise u on things u might do to maintain status quo as u research the next step. i hope your legal issues are finished so u can focus on your health. sending a big hug. i will catch up soon. babs824
Well Hi. Wish your liver were in better shape. Im hearing rumors of clinical trials w/o interferion. www.clinicaltrials.gov sure would be nice if they had one of those out in India. Wishing you well murariji. Ha ha buddhist? H.C? my thoughts are ??? Good luck
to be brutally honest, it's time to act, not wait. Hector and Eureka have some outstanding recent posts on why, at 34kPA, time is not on your side. As you've seen over and again on this forum, many patients effectively drive their own tx. Monitoring tx does not require extensive medical training. Most specialists delegate it to RNs/PAs. As long as you have access to the rx (hopefully triple) and to test orders, you're ready to go.
Thanks all for your good wishes, and especially Eureka for the heads up on nadolol. I'll run that past my doc, and if he's not aware of it, will discretely shop around for someone who is.
Hearing of 139 weeks of tx makes me weak at the knees, but no growth of the varices for 3 years is a great boost.
Treatment here is far from cutting edge, and the established doctors are conservative, actually, the whole country is conservative. I doubt the doctors have the confidence and resources to fix things if they start falling apart during tx, so they are cautious. My doctor will not even allow a biopsy as he says there is a risk of bleeding and it wouldn't make any difference to the overall approach, which seems to be to do nothing at present. He said half jokingly that I have to master the art of waiting. Maybe I should become a Buddhist!
Hearing of 139 weeks of tx makes me weak at the knees, but no growth of the varices for 3 years is a great boost.
Treatment here is far from cutting edge, and the established doctors are conservative, actually, the whole country is conservative. I doubt the doctors have the confidence and resources to fix things if they start falling apart during tx, so they are cautious. My doctor will not even allow a biopsy as he says there is a risk of bleeding and it wouldn't make any difference to the overall approach, which seems to be to do nothing at present. He said half jokingly that I have to master the art of waiting. Maybe I should become a Buddhist!
Good to see to you around. Three things to mull over (1) what eureka said (2) dangerous relative to what? what are the alternatives? (3) ask for a recount.
All the best to you,
All the best to you,
Hello Muraiji ,
I hope a viable option presents itself soon .. Is this the same doctor you have been using from the beginning ? Have you had a second opinion ?
Wishing you the best always ...
I hope a viable option presents itself soon .. Is this the same doctor you have been using from the beginning ? Have you had a second opinion ?
Wishing you the best always ...
Can't offer any advice. Just wanted to say hello.
murariji:
I just wanted to say hello.. as we have not seen much of you lately. I know INF. can be tolerated by comensated chirrotics... however not knowing what all the doctors findings were,why was it that he felt it . was too dangerous.?
Again....just a hello.. and hope you will stick around some......
Will..
I just wanted to say hello.. as we have not seen much of you lately. I know INF. can be tolerated by comensated chirrotics... however not knowing what all the doctors findings were,why was it that he felt it . was too dangerous.?
Again....just a hello.. and hope you will stick around some......
Will..
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First of all, if you have varices, you should be on a beta-blocker. Varices can worsen and cause life-threatening bleeds if they rupture, but there are medications that can help reduce portal hypertension. My husband was diagnosed with "trace" varices (sub-grade 1) in 2008, was put on nadolol and has not had any further growth of the varices.
As far as treatment, my husband's doctor was very up front about the fact that he was taking on my husband as a patient even though many doctors wouldn't in the setting of cirrhosis, small varices, and other pre-existing conditions, but he did treat, for 139 weeks, and is undetected 8 weeks post. It can be done, but if you have liver complications like varices, you need an experienced hepatologist.
The ALT/AST numbers are not surprising, they can be typically elevated in liver disease, and don't necessarily provide useful information. Same with your VL, low or high doesn't mean anything unless you are measuring response during treatment.
Welcome back, and best wishes to you as well. ~eureka