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Varies in the Esophagus
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Varies in the Esophagus

I am a 72 year old husband, father, grandfather, and great-grandfather suffering from Cirrhosis of the Liver.  This condition was diagnosed in 1994 0r 5 following the discovery of Hepatitis C.  It was suspected that I acquired the Hep. C as a result of a 1968 auto collision requiring a blood transfusion, as the blood screening was almost non-existant back then.  I however was a pretty heavy user of alcoholic products from age 20 to 39 years of age.  I completely went the dry road in 1972.  So I have always wondered if my Hematologist was really accurate.  I had a liver biopsy done that year of discovery revealing scaring.  Since the hep. C seemed to lay dormant at that time and for several years to follow, I chose not to take treatment.  Since the first of this year, my condition has worsend.  I have been fighting fluid retention, abdominal pain, diverticulosis, and other things associated with one in my condition.  Recent exams (colonoscopy, upper GI, a CT & EGD) revealed no cancer or polyps at this time.  The spleen is continuing to enlarge, and VARIES were discovered in my esophagus, which my specialist wants to check periodicly.  They are not too large at this point. I am hoping to have someone explain the sugnificance of VARIES and what part they play in an over all prognosis.  I am also having increasing HICCUPS, causing some difficulties and continue needing Ondansetron for my daily nausea.  I will thank you now for any replies.  My concerns are starting to get the best of me.
Rex
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Hi Rex,

We talked a little before in your previous thread. BTW we usually suggest continuing the topic in the same thread (we're limited to how many new threads we can post a day) but for a 72- year old great grandfather with cirrhosis, I think you have earned the right for a new thread. :)

Alcohol cannot cause hepatitis c. What it can do is make the hepatitis c progress faster. So you probably did get the hep c in that 1968 blood transfusion.

Varisces are bleeding veins in the esophogus. They are indicative of cirrhosis. They should be monitored on a regular basis.

But most important of all, as some of us suggested in the other thread, we'd really like you to get another medical opinion if at all possible. The fact that one doctor or hospital can't offer you a treatment does not mean you can't find a doctor or hospital who won't treat you.

If finances are an issue, many of the larger teaching hospitals offer free trials, clinics and programs. I'd try to get a consultation at the largest teaching hospital in your area that has a transplant center. You may not qualify or need a transplant but it's best to go to a place that offers all services.

-- Jim

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Hey Rex, beleive me things could be worse and will probably get worse....

4 years ago I had a near fatal unstopable massive bleed from the varices.  I had like zero platletts and went into liver failure.  The doctor called my 80yr old bed ridden estranged mother to tell her that I would be dead by morning if not sooner.


i said, but I've never seen Paris.  I was then tested for hep c and dx for hep c and had it-had it since 1967-that blood transfusion thing. since I had no money or insurance and treatment was iffy, I went to Paris, came back and had an appointment w/a hep specialist in the big city.

I was a 2b, and trials for End stage liver diseasers was starting.  All my meds were from Schering-free-I cl'd by day 18!!  Being a 2b, I fin 24wks and have never looked back.

I'm in my late 50's.  I had minimal sx's which I handled w/otc's and medical marijuanna.

All these things I put down to aging  just disappeared.  I had been under tx for deep cronic (chronic) clinical depression for years-deprression just gone.  I was so crippled up I walked all hunched over, couldn't sit w/o pain for any length of time, couldn't hold a pen or open a door--all gone!

My hair grew back dark and thick and curley-all grey all gone.  Cronic (chronic) heartbrun-all gone. Extreme emotional reactions-almost all gone.  Still talk to dead people-that white light thing.

My last appointment showed a 'remarked improvment' in liver function, I've more than likely regressed a stage or 2.

B/regardlessly,  tx improved the quality of life-before I had no life in retrospect--I was just accomadating my growing list of ills.

I'm on no medication now.  I follow the dieatary guidelines and supplemental suggestions advocated by DR Andrew Weil and Dr Mellisa Parker, both have current, good books out.  I'm still dependent on books, not idle chatter and incomplete scenarios found on the .net.

I have friends who have met resistance form the VA about hepc treatments.  The attitude is, let'm die off-cheaper in the long run.  which is bs.  Why linger in hell for years when you can tx and have a life.  Would someone let their diabetes go untreated b/c they are over 70 and bound to die anyway?  I think not!

You owe it to yourself to have the best life possible.

I'm one of the people who successfully treated @ end stage.  I'm successfully living w/a very damaged liver.  I have to watch everything so my body stays in balance.

B/the habits I reinforced and started while on tx are the very habits all people should be living by.

So, here I am.  On the 4th anniversay of my near death experience, I'm 3 1/2 yrs clear.  I've had a fabulous 3 yrs.  I travel extensively, fully participate in family functions, have rediscovered the 'joie d'vie'.

I watch my diet to avoid encephalopathy-esp dairy-try to get my rest and exercise everyday.

Insist on treatment.  Quit living a half life and embracce a new day.
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That transplant thing is not all its cracked up to be.  I have a friend who has an on and off series in the Seatlle Times(WA).

Jack Slater writes bout the whole experience.  Unfortuanately, his untreated hep c-1a-attacked his new liver and in less than 6 mos, he's back to a stage 3 and now has to treat and be on  anti-rejection drugs for the rrest of his life and we are both 3's now.  So transplants are not the answer always.
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That's a wonderful story of hope!

Rex,

It sounds like NewSoujourn -- while a little younger -- was in a similar place to yourself. Cirrhosis with Varisces. And I think her take on the VA and some doctors is correct.

No promises, but look around, talk to some more doctors and you just may find some real hope. I don't see that with your current doctors.


New...womder if you could elaborate a little more on your "chronic heartburn", when you got it, when it went away and the symptons. I've been having a pretty bad problem with GERD/LPR from the get go. Not a pleasant combination with treatment.

-- Jim
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Not always, but sometimes the bigger the degree, the bigger the as*hole. :)

-- Jim
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New - I couldn't help but wonder why you stated "That transplant thing is not all its cracked up to be."

I would like to clear the air as a post liver tp patient (18 mos) and HCV'er. If a medical doctor says liver transplants cure HCV then he/she is a quack. If one read this somewhere, what a myth. HCV, as we know, is a blood born desease. The majority of the HCV lives and breeds in the liver and the majority of the virus goes out with the old liver during transplant. However, some do remain in the blood. The remaining HCV will attack the new liver in due time. How fast and how hard depends on how one takes care of their liver health post tp.
  
I consume anti-rejection meds daily (3 tiny pills day), not for the HCV but to prevent my WBC from attacking the new liver and causing the the body to reject the donor organ. In the near foreseable future I will be weaned of all medication. So lets remember, liver transplant are performed as a last chance for survival, not as a cure for anything.
=================================================================

Rex - Here's the UNOS (United Network for Organ Sharing) link were you will find the teaching university hospital/medical center nearest to you for the liver and HCV experts.

http://www.unos.org/

1. Click on Go To Data
2. On the left click on State Data
3. Select your state
4. In Step 2, Choose Category, select Transplant
5. In Step 2, Choose Organ, select Liver
6. In the lower selections of Step 3 click on Transplant by Donor Type, Center

Best wishes.
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Thanks New... appreciate your input.

and Jim,
To be perfectly fair, I want to tell you that my family DR. brought up the subject of advances in treatment for Hep. C patients around two years ago and tried selling me on the idea of giving them a go.  He said that there were some improved results coming out of these treatments.  But the fact that my original liver specialist back in the mid nineties painted this negative picture of treatment at that time, I put the ball in his court and asked him, given the same information he had just given to me and at my age at the time (early 60's), what he would be inclined to do?  He replied that he'd forgo the treatment.  Remember, I didn't really have any ill effects other than becoming more fatigue as time passed, and some infections (loss of immune system??)  The specialist released me to my family DR. and said that I did not need to return unless we thought it necessary.  That specialist is the one who ordered the ultrasound and liver biopsy back the, and I have not seen him again.  The family DR. and the VA liver specialist have been following my condition and running my blood work.  The reason I got involved with my VA Med. Ctr. was to avail myself to the veteran pharmacy for needed BP and other medicines, a very affordable Vets benefit.  The VA wants to keep monitoring my Varies once a year, and do my blood tests monthly, also check my stomach fluids annually.
I have set up an appointment with my family DR. to further discuss all of this concern, and will search the other opinion that you all recommend.
I thought that the tread that I visited yesterday had filled and was no longer useable?  I'll try to get a handle on the ground rules.  Thank everyone so much for their response.
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Thanks for sharing the information and web stie.

Wondering your medical team is advising treating the hep c post transplant and what the sucess rates are? Also, if you want, maybe you could tell us a little about quality of life before and after transplant. Thanks.

-- Jim
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The mid-nineties were like the ice age in terms of hepatitis C treatment. :)

You know they did a study on specialists once. I can't remember the exact details, but the point was that it's harder to get a specialist to change his original diagnosis than a leopard to change his spots. I think you get the point. :)

You sound like trusting soul which is a wonderful trait except many of us here have found out the hard way that it isn't always the wisest approach to modern medicine.

There are so many stories here and elsewhere of simply wrong or outdated advice by this specialist or that.

You really owe it to yourself to go outside your circle of comfort (family doctor and liver specialist) and find someone that is not invested in your case and can give you a fresh, objective point of view.

Good luck in whatever you decide and please stick around if you think we can be of any help.

-- Jim
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Being a real beginner in this forum, I wonder if you could explain the abreviations below?  Is there a list of these that I could get ahold of?
************************************************************

i said, but I've never seen Paris. I was then tested for hep c and dx for hep c and had it-had it since 1967-that blood transfusion thing. since I had no money or insurance and treatment was iffy, I went to Paris, came back and had an appointment w/a hep specialist in the big city.

I was a 2b, and trials for End stage liver diseasers was starting. All my meds were from Schering-free-I cl'd by day 18!! Being a 2b, I fin 24wks and have never looked back.

I'm in my late 50's. I had minimal sx's which I handled w/otc's and medical marijuanna.
****************************************************************
Thanks, Rex
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Avatar_f_tn
like jm stated, hcv info is ever changing, and if a dr was to say today that hcv is dormant, he would be burned at the stake!
there is no such thing, chronic hcv is always active, the fact that we exhibit no symptoms until is too late, is what makes it the "silent killer".
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Cuteus said prev: "and if a dr was to say today that hcv is dormant, he would be burned at the stake!"

I think what you mean is that "he SHOULD be burned at the stake" :)

I'm still truly amazed for example when I see my PCP, dermotologist, ENT or any other non-liver/non-hep c specialist, how much in the dark they still are.

Here are some random quotes from different doctors (good in their field but not liver specialists) over the last year:

"Hepatitis C -- So how long do you have to take the interferon for -- six weeks?"

"You're taking the pills right? How often do you go to your liver specialist for injections?"

"No, ribavirin doesn't affect your skin...just the interferon"

Maybe others can share their memorable quotes. :)

-- Jim





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Jim, You're welcome. I visit this forum quite often and have gained a wealth of information from you and others, especially yours lately. I don't post nor reply often because I'm not tx'ing and haven't been on any type of tx. I'm just a post liver transplant (tp) patient living w/HCV and detected HCB antibodies.

My background, as you once requested in an earlier post, is: Age, mid 50's, geno 1a, born in Honolulu, Hawaii, raised since 8 yrs old in Los Angeles, residing in San Jose, Ca, ex senior engineer in the telecommunications wide area networking industry. No drugs, no drugs via needles either, no heavy booze unless you count college days, no drunken stupors...well maybe one or two. Do not smoke nor drink alcohol since 2000. HCV diagnosed in late 2003. Same time they found my HCC.

I was scheduled to meet the HCV program director @ UCSF, here in No Cal, this Oct but that has been put off until early Dec. From what I understand she is volunteering her services to the Katrina survivors. I can wait, they can't.

My health plan is with Kaiser Permanente who jobs the liver speciality out to UCSF and UCLA in southern Calf. I had my tp performed @ UCLA. All services are covered 100% except for piddly deductables here and there.

As far as starting tx, I'm not any time soon. I like the progress of the NM283 trails but will wait out the storm. I just don't like nor want to put myself through the interferon/ribaviron tornado either. With my suppressed immune system, I just don't know what the long term sides int/rib may cause to my body. This concerns me greatly.

Pre tp PCR RNA Quantatative was 8.5 mil. May 2, 2005 = 278,457. Sept 1, 2005 = 422,651 an increase of 144,194. Results of the remaining lab scores are fine (xcept ALT and AST). All within mid-level normal ranges. I get tested every month - CBC, AFP and liver panel. I get a biopsy every three months. Colonoscopy and endoscopy yearly. Because of my meds, I do, however, have elevated AST and ALT readings. Sept 1 ALT = 89 (range <36), AST = 46 (range 10-40). Ever since tp they kind of remain in this area - sort of like a buzzard hovering around fresh road kill. I've been told on numerous occassions that this is normal life after tp. Hmmmm. Do they see me as dead meat?

Pre tp is another story. This snapshot was taken in early November of 2003
Alkaline Phosphatase  = 172 U/L (range 47-137)
Biliribun Total = 1.4 mg/dl (0-0.3)
Alfa Feto Protein (AFP non-maternal) 452.9 ng/ml (0-15)
AST 11 U/L (10-40)
ALT 89 U/L <40
platelets around low 60's

This snapshot was taken in early Jan of 2004 (same lab)
Alkaline Phosphatase = 204
Bilirubin total = 2.5
AFP = 2238.9 <=== the big nasty growing REAL REAL fast
AST = 258
AST = 294

My tp came about due to a 3.1 x 2.7cm HCC lesion in the left lobe discovered in Nov 2003. It was .5cm from the portal vein and growing fast. By Jan of 2004 it grew half an inch. The potential of a rogue cell(s) or a mass of cells escaping out the portal vein and starting a new colony elsewhere was extremely high. The potential of it colonizing on my portal was even higher. Thus the rush to tp and not treat. Slowed the growth in early Feb 2004 by RFA (radio frequency ablation). They stick a needle like prong into you, press the handle, a claw comes out surrounding and grabbing the lesion and then they blast the lesion with microwave. Ala cooked tumor - well done please, not medium, do not serve rare. After the vicodine wore off I felt normal again. No itching and could finally sleep longer than 45 minutes. Man was I a happy camper. March 2004 the liver was yanked.

Currently, the surgeons don't seem alarmed about the HCV increase, but again, this is not their course of expertise either. They're the yankers not the treaters. They confer with the hepotologist specializing in HCV treatment. I know on several occassions my labs were presented to the UCSF HCV director for analysis and they say not to be alarmed cuz she isn't. This dr heads the HCV program for all of Kaiser No Cal too. Then Kaiser annoits a dr to direct their HCV program for specific regions, and so on. Oh yeah, my last bx in July was stage 1, no nothing everything else normal.

A few months ago, w/o UCSF's knowledge, I went for a second opinion and had my labs looked at by the Kaiser HCV program (they call it passport) director for my area. She too says not be alarmed and there is time to wait for tx. I wait now until I meet head on with UCSF in early Dec. to discuss treatment.

Ok, so where/how do I think I contracted the HCV?
1. Blood transfusion when I was 5?
2. Dirty dental novacaine needle?
3. Dirty medical tetnus needle?
4. Misquito bite(s)?

Dr's always ask "How do you think you contratced the HCV?". I have presented all four to both surgical teams - UCLA and UCSF (current) and at first get stormy stares. Sorta like how dare you question us, we told you its more than likely from the transfusion. When I inform them there take is unacceptable and for them to think about the high probability of 2-4 being a source, they eventually nod their heads. But never, never verbally do they concur with this theory. Are they afraid of dirty needle lawsuits? Maybe. As far as misquitos, if they can transfer West Nile virus from human to human, why not HCV? I don't know. Its a thought.

I'll be reading and watching the posts that all you wonderful support folks provide on this forum. You are the best!
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My favorite so far was when my PCP ordered my original bloodwork prior to my seeing the hepatoligist. I asked her what my genotype was and she said C--you have Hepatitis C. (Something we both had known since 1989.)
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Thanks again, I'll try to check that chat out.

Another thing I thought you or some one else might be able to help me on is this question I have.  Would it be possible for
Varisces to cause vocal problems?  My voice has been weak for some years and is especially poor most of the time now.  It is much of the time reduced to a whisper mixed in with the hoarseness.  I mentioned it to my DR. and didn't get a definitive answer.  Still haven't gotten any better answers to my blasted hiccups either.
If it sounds like I'm reaching for straws....I probably am.
Thanks for putting up with me.
Rex
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Yes, hoarsness can be assocated with varisces. Not sure about the hiccups and varisces.

On the other hand, both hoarseness and hiccups are associated with GERD (reflux). Best thing is to see an ENT and they will poke down your throat with a thin lighted instrument, check to see if your larnyx is red and/or swollen and come up with a vague diagnosis or shuttle you off to a gastro doctor for another vauge diagnosis:)

Seriously, it's probably worth having an ENT poke around if you haven't already.

-- Jim
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Yes they have, and found that I had Thrush as a result of taking 4 Antibiotics over the last 6 months.  It is supposed to be gone now.
One additional thing I have failed to mention is that I have had very low platelets on my last few blood workups.

I will give you a break and again thanks for the info.
Rex
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Here's a little help with the lingo.  DX=diagnosis  TX=treatment SX=side effects  RX=prescription  OTC=over-the-counter meds  PCR (or PCR by RNA)= qualitative or quantitative blood test for HepC. Qualitative gives either positive or undetectable result for HepC.  Quantitative gives amount of virus in your system, Viral Load (VL).  EVR = Early viral response. Looking for at least a 2 log drop in VL (ie, from 1,000,000 to 10,000) at 12-week PCR during tx, or undetectable (even better!)  SVR - Sustained viral response - Virus undetectable 6 months (and beyond) post treatment.  Hope that will make your reading a little easier.  DJ
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If you're a little computer savvy, there's a moderated chat on cirrhosis tomorrow night at 8PM, Eastern time over at Hepatitis Neighborhood. Perhaps the PA could give you some additional insight.  http://tinyurl.com/8apfc

-- Jim
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Yes, peace sounds good. Yes, stress is bad. Sorry about your insurance problems but you're strong-willed lady, so I know you'll find a way. Hopefully, by the time we're both SVR, discussions of extended tx will be trumped by discussions of the new protease inhibitors. Who knows? Take care and rest.

-- Jim
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I guess it depends on whom you want to believe as far as WHEN they will be available:
"ANSWER TO QUESTION OF THE WEEK: (9/11/05)
There are many oral medications currently under investigation for the treatment of chronic hepatitis C. Among those showing promise include NM 283 (Indenix) and VX 950 ( Vertex). However, FDA approval is probably about 8 years away.

Newer improved drugs with a similar structure to ribavirin (known as ribavirin analogues) but less side effects are in the process of being developed.  The most promising of these analogues is viramidine. The major advantage of viramidine is the decreased incidence of associated anemia. If interested in participating in a study using viramidine please go to:"
f
From Melissa Palmer, reknown hepatologist.
choose whom to believe; 3 yrs or 8. Anybody's guess, including ours.
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re: the 3 years vs. 8 years, I can tell you that Vertex is on the record for stating they are on schedule for filing an NDA in 2008. From there, it would take 6 months at most for approval. All Phase II's should be complete in 2006, Phase III should complete in 2007, leading to the filing in 2008. They are already doing the things they need to support filing in 2008 including formulations and ramping up for production. This morning, they will be presenting at a conference which can be heard on the web. They also archive the old ones.
For anyone who is interested, check them out at www.vrtx.com
I am trying to wait either for that approval, or for a trial for it near me. It has been called best in class by far, and has shown to have minimal sides. Their trials will be designed to achieve SVR, even in phase II. Some docs are not even aware of these things, but that is not their fault. My family doc didn't know about this drug until I told him, although I did tell him much before it went into the clinic.
Funny thing is, I email him updates, and he tells me he appreciates them so he can keep his patients updated.
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Thanks again for the information on Vertex.  My, how medicine has changed.  Now doctors rely on their patients to update them on the latest advances.  Talk about the tail wagging the dog!

Susan
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Eis said prev: "Would you jump on the bandwagon right away?
Ah, why talk about it, we will be SVR....my tealeaves said so."
==================

Like yourself, I'm very confident of SVR with the current drugs. But in the event I did relapse, based on my current treatment experience, I would be reluctant to treat long-term again with another inteferon cocktail.

We can only cross our fingers that Vertex -- or protease inhibitors like Vertex -- will live up to their promise. As to when Vertex will be out of trials, 3-5 years is the number most docs seem to be  talking about. Possibly even sooner for limited use if the FDA puts it on a fast track.

If I had to make an optimistic guess, I'd say that in 2 years, Vertex or drugs like Vertex, will be the only treatment being talked about.

For those interested, I believe the current Vertex trials are only open to treatment naive patients. But hopefully, future trials will include non-responsers and relapsers.

All said, it would be remiss not to remind ourselves of the excitement a few years ago about BILN 2061, that didn't pan out. So there are no guarantees.

Recently, someone at another discussion group asked me how drugs like Vertex might affect our current treatment decisions. I'll post an edited version of that answer in a new thread shortly.

-- Jim


-- Jim
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the site i give you will be extreemly helpful to you as you go through all this. it is packed with information and folks going through cirhosis and it's complications. they are very informative to help folks know what to do and when. they also can give you info on your blood tests and results and give you a heads up on what to expect from your hepatologist.

it's extreemly important that you are in good hands medically for the proper care. these things can be really tricky. please try the site i give you and follow thier advice...

there is also a very supportive forum there with folks going through exactly what you are...

i pray you will be well and get the help you require at this most important time in your disease progression. please be careful to make sure they are doing the right things for you medically especially with the varises right now as if one springs a leak it could kill you immediately...please find out if you in fact shouldn't be treating those instead of monitoring them...

here is the site. you must sign in to post but it is free and a trustworthy site. i go there often to read up and ask questions as i am just beginning cirhosis too. please be careful and keep an eye on your own treatment and your drs to make sure they are doing all that can be done for you.

CUT AND PASTE BELOW ADDRESS...

http://forums.delphiforums.com/liverfailure/messages/?msg=4652.1
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Avatar_m_tn
Sorry to tread on this thread but the thread below was filled.

Ina,  I have been tested for cryo since ending treatment last October and the results have gone back and forth between a trace and negative (the last one I discussed with my Hematologist being negative- the one taken that day not reported to me yet since I'm seeing him every 6mo now).  Had any cryocrit result been more than just a trace, I would get an early PCR to check for relapse and probably opt for maintenance Interferon.  I've been trying not to worry too much about relapse during the period from the 6mo post tx PCR (clear) and the 1yr post tx PCR (coming up in early Nov).

I'm very interested in your story or info about the others with cryo, especially symptomatic cryo.  There were some others I remember, like BostonGirl for example.  I hope to hear from you here or at ***@****.  I wish you the best,  Dave
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