Aa
Stage 4 Grade 3 and wanted to know about supplements and such
I just got bx results and now am scared to take anything. What should I totally avoid (besides alcohol)? What is ok still to take? I'm scared to even take tylenol! If my foot doc gives me percocet for my foot pain, is that safe? Milk thistle? Vitamins? Even everyday foods? I am only 33 and found out I have hep c 2 months ago. Any help would be appreciated. Thanks!
I was diagnosed with Hep C back in the early 1990s. In the opinion of the Liver Specialist at that time, he blamed it's onset with a blood transfusion I received following a auto collision in 1968, back when blood was not screened as it is now. At that time he did a ultrasound follwed by a liver biopsy which revield scaring. The Hepatitis has not been a problem except for a couple of bacterial infections with high fever. With antibiotics they were checked.
Lately however,(the last 7-8 months), I have been experiencing abdominal pain and nausea. My present specialist has taken me off all medications, which included meds for HB Pressure. I have been retaining fluids in the stomach and feet area. He put on a 50MG diuretic, and an anti-nausea med. My BP is maintaining great levels, with out these meds that he stopped.
I have some days that are pretty good, and others not so good.
No appetite, and have lost about 20 lbs. during this stretch. I have had recent Colonoscopy which detected no Cancer, but some internal hemorrhoids, and no polyps. I also had an upper GI which uncovered the presence of Varies in my esophagus, although not too large yet. The specialist said that the stages 1-2-3-4 do not apply to my Hepatitis C condition.
He said that I could never under go major surgery with General anesthesia, as I most probably would not wake up from it. He said that in my present condition, I had basically 4 conditions to be aware of and do everything I could to prevent any of them. They are; Infections, Bleeding (and I do have an enlarged spleen), Fluid Retention, and Mental confusion.
I have rattled on here without getting to the question I am asking about. That is, I am developing an occasional HIC-CUP
and it is becomeing more frequent. It's rather harsh to the point that it causes real discomfort in my abdomine and throat. Not steady like the constant hic-cups we are familiar with, but come on individually many times a day, and getting to be worse as time passes. IS ANYONE FAMILIER WITH THIS PHENOMENON?
WOULD APPRECIATE INPUT. tHANKS FOR YOUR PATIENTS, and could you tell this is my first post to this forum?
Wrecksm
Lately however,(the last 7-8 months), I have been experiencing abdominal pain and nausea. My present specialist has taken me off all medications, which included meds for HB Pressure. I have been retaining fluids in the stomach and feet area. He put on a 50MG diuretic, and an anti-nausea med. My BP is maintaining great levels, with out these meds that he stopped.
I have some days that are pretty good, and others not so good.
No appetite, and have lost about 20 lbs. during this stretch. I have had recent Colonoscopy which detected no Cancer, but some internal hemorrhoids, and no polyps. I also had an upper GI which uncovered the presence of Varies in my esophagus, although not too large yet. The specialist said that the stages 1-2-3-4 do not apply to my Hepatitis C condition.
He said that I could never under go major surgery with General anesthesia, as I most probably would not wake up from it. He said that in my present condition, I had basically 4 conditions to be aware of and do everything I could to prevent any of them. They are; Infections, Bleeding (and I do have an enlarged spleen), Fluid Retention, and Mental confusion.
I have rattled on here without getting to the question I am asking about. That is, I am developing an occasional HIC-CUP
and it is becomeing more frequent. It's rather harsh to the point that it causes real discomfort in my abdomine and throat. Not steady like the constant hic-cups we are familiar with, but come on individually many times a day, and getting to be worse as time passes. IS ANYONE FAMILIER WITH THIS PHENOMENON?
WOULD APPRECIATE INPUT. tHANKS FOR YOUR PATIENTS, and could you tell this is my first post to this forum?
Wrecksm
Hi, I agree with you about "outing" docs, and anybody else in a public forum, unless the info is already out there and you've gotten direct permission from said personage.
Forgive me if I'm wrong, I know another patient of Dr. Schiffs, Snook might have something else to say, but she told me that Schiff says more like 3 years and maybe longer for the new meds. My own doc said more or less the same thing. If the new meds continue to do so well in the trials - they seem to be even more optimistic because of this. And from what I've been reading, if they do really well in those crucial last phases which they are going into - the Feds will fast track them...so maybe more like 3.
Also, I spoke on the phone with one of the main researchers responsible for the Vertex drug, I tracked him down, ha ha! He was really optomistic about their protease inhibitor; but of course he would be. Some of the things he told me really had me excited. But of course I dont want to get too carried away and I try to be cautiously optimistic about the whole thing.
Forgive me if I'm wrong, I know another patient of Dr. Schiffs, Snook might have something else to say, but she told me that Schiff says more like 3 years and maybe longer for the new meds. My own doc said more or less the same thing. If the new meds continue to do so well in the trials - they seem to be even more optimistic because of this. And from what I've been reading, if they do really well in those crucial last phases which they are going into - the Feds will fast track them...so maybe more like 3.
Also, I spoke on the phone with one of the main researchers responsible for the Vertex drug, I tracked him down, ha ha! He was really optomistic about their protease inhibitor; but of course he would be. Some of the things he told me really had me excited. But of course I dont want to get too carried away and I try to be cautiously optimistic about the whole thing.
Hi Ina,
How was "vacation" ?
Because it was a private doctor-patient conversation, and not a published statement, I don't think it prudent to call the doctor out in a public forum. Nor, if you've so noticed, do I choose to
publically name any of the doctors I treat or consult with. Partly it's because of my own private nature and partly because I would then feel uncomfortable criticising my care which I do on occasion. This was presented clearly as an anecdotal conversation between me and a doctor/researcher I was consulting with. Please accept it in this context.
I should add that I don't think he's alone in this regard. I believe, and someone correct me if I'm wrong, that the esteemed Dr. Schiff told Snook_man something similar. There's really are a lot of very exciting stuff in trial right now and a lot of docs are very optimistic.
I was actually more suprised by his second statement -- that if I relapsed he would not recommend re-treatment with current drugs but to wait a few years until better drugs came out of trial. And he's talking to a stage 2-3. He wasn't even that concerned about re-biopsing me right away although I'm not sure if I agree there.
Does that mean there're any guarantees he's right. Of course not. But statements like this from leading researchers do offer hope and must be somehow computed in making tx decisions.
I'll ALSO add that 37 years ago, the leading heptologist of the day -- perhaps of all time -- Dr. Sheila Sherlock -- told me that my "chronic persistent hepatitis" would burn out in 4-7 years. So, yes, there're no guarantees. :)
-- Jim
How was "vacation" ?
Because it was a private doctor-patient conversation, and not a published statement, I don't think it prudent to call the doctor out in a public forum. Nor, if you've so noticed, do I choose to
publically name any of the doctors I treat or consult with. Partly it's because of my own private nature and partly because I would then feel uncomfortable criticising my care which I do on occasion. This was presented clearly as an anecdotal conversation between me and a doctor/researcher I was consulting with. Please accept it in this context.
I should add that I don't think he's alone in this regard. I believe, and someone correct me if I'm wrong, that the esteemed Dr. Schiff told Snook_man something similar. There's really are a lot of very exciting stuff in trial right now and a lot of docs are very optimistic.
I was actually more suprised by his second statement -- that if I relapsed he would not recommend re-treatment with current drugs but to wait a few years until better drugs came out of trial. And he's talking to a stage 2-3. He wasn't even that concerned about re-biopsing me right away although I'm not sure if I agree there.
Does that mean there're any guarantees he's right. Of course not. But statements like this from leading researchers do offer hope and must be somehow computed in making tx decisions.
I'll ALSO add that 37 years ago, the leading heptologist of the day -- perhaps of all time -- Dr. Sheila Sherlock -- told me that my "chronic persistent hepatitis" would burn out in 4-7 years. So, yes, there're no guarantees. :)
-- Jim
No, I see Dr Zein @ the Cleveland Clinic. But what was your experiences with them altogether?
Are you seeing Dr. William Carey at the Cleveland Clinic? If so, I'd be happy to talk to you off-line about my experience with him. I was born and raised in Cleveland (my family's still there), but I now live three hours away.
Susan
Susan
You've been through a lot. I haven't been following the viradamine trials that closely but conceptually it seems like the right drug for you in the event you don't clear at week 24. Curious...can the doctor's just start substituting viradamine if and when your hemoglobin falls too low, rather than taking you off treatment and starting over? The Vertex and other protease inhibitor trials also might be of interest.
Forgive me for stating/asking the obvious, but your doctor wouldn't be the first to make this mistake. Have they checked your iron stores -- specifically Ferritin and Transferrin Sat ? Procrit will not work unless they're adequate. The fix, of course, is iron supplementation. It's strange because we're usually told not to take external iron, but in some cases it is necessary.
All the best with treatment.
-- Jim
Forgive me for stating/asking the obvious, but your doctor wouldn't be the first to make this mistake. Have they checked your iron stores -- specifically Ferritin and Transferrin Sat ? Procrit will not work unless they're adequate. The fix, of course, is iron supplementation. It's strange because we're usually told not to take external iron, but in some cases it is necessary.
All the best with treatment.
-- Jim
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