Email I received from a girl named Cathy

Hi Ron,
I have recently stumbled upon your e-mail address from Dr. Ren's web site message board.  Which I had gotten out of a Hepatitis magazine.
You seem to be pretty informed on all this.  I will tell you MY story, if you would listen, i would appreciate it.  I don't know what to do at this point.
I am a healthy (5'6", 125 lb) 46 year old female. When I was 22 years old I was in a bad accident (was hit by a train) they saved my life, but gave me blood.  I found out about 10 years ago I had Hep-C, type 2-b (the cause of my divorce), I have mild fibrosis, I think stage one.  Had several biopsies done(every 5 yrs), results stay the same except the viral load keeps going higher, I believe it's 700 million.  My doctor feels that because my liver is close to normal no need for treatment, because there wouldn't be anything to compare test A to test B to.(damage)  He said treatment will only lower the viral load some, not irraticate it.
When I first found out, I had the biopsy done, I used to drink socially, I quit everything, smoking , drinking and took up the gym(running 3 miles a day and lifting every day, 5 days a wk) I did this for 3 yrs. and had another biopsy done, the results stayed the same (except for the viral load going way up) He wouldn't treat me.  Said I was too healthy. My concern is that I now have had this for 24 years, I am starting to really worry about my mortality. And am afraid if I don't get treated while I am young enough to handle it, that I will get "sick" when I am, in their eyes, too old to be treated.  I suffer from what you all call the "symptoms" depression, memory loss, fatigue, I haven't worked out in 2 years, and just sit and waste the days away.....just don't know where to focus anymore...do you have any ideas?  I know that it's easy to say to get motivated, but I just need some answers about what to do with this, I feel helpless just sitting here doing nothing. I have a hard time dating , it's a big turn off to people...Thank you for your time, Cathy Collins

[spiritwalkin]

You like my wife got this from bad blood along time ago. I understand what your feeling. However I'd find a new docter. They did not treat my wife for same reasons. Then BAM!! She was in end stage liver disease with significant cirrosis (cirrhosis). Within a few short years she had living donor transplant from our son and her liver was 90% gone. The docters have said she should have started treatment immediately to stave off rapid progression. That's after the fact, and we went after the Gastro. supposed specialist, that ignored her deteriorating health. GOOD NEWS is the right proffessionals saved her life. She would not have been here to see 2 beautiful grandbabies if she'd continued to listen to one man's bad advice. If God forbid, you have that huge viral load and no attempt to treat there is something very wrong. I'm sure you can find another opinion.

[beamishboy]

Cathy-you should consult another doctor,preferably one who does treat hep-c;do lots of research&examine all aspects:pro&con on current trx options...Your viral load seems 'incredibly' high,maybe its 7,000,000? either way, not necessarily indicative of liver damage-say the experts-Get 2nd opinion,Get informed-GOODLUCK

[Mister beagle bailey]

I think you need to change your Dr.  If your VL keeps going up it could be damaging your liver.  I'm a 2B also with a starting VL of 318,000 before tx.  Tommorrow will be shot #9 for me.  Us 2B's only have to treat for 24 weeks and SVR rate is like around 90%.  The decision has to be yours and yours alone.  I had the same problem with my first dr. and found another who is one of the best in the country.  I live in Fl. and stay in NY for treatmet.  Once a month I fly home for 5 days to be with my wife, but I'm lucky as our daughter lives near the treating Dr. so I stay there. Hope you decide soon and please let me know you do decide to do.

                      Beagle

[Upbeat]

This is a follow up of my response to her.

Thank you so much for your immediate response.
My doctor doesn't want to treat me (I actually went to 2 doctors for 2nd opinion) because he said that the sickness the meds cause are far worse then just living with the virus, and that it would not irraticate the virus anyway.(that we are still in the stone age as far as treatment meds are concerned)  They were both gastroenterologists. (the two Hep. specialists in this area)
Yes,  the test was PCR (not sure what it means though)  my ALT level from the first biopsy was 21 and the second was 24.
No, I haven't checked my blood sugar, myself, unaware if they did during testing, but does that mean I am more prone to becoming diabetic?
These new treatments coming out, do you think it is wise for me to just sit back and wait for them (til 2008)?  I keep thinking that I shouldn't treat myself until something foolproof is invented.
And you tell me not to stress, but I was diagnosed 10 years ago, and I now the only time I was given blood was in 1982, which would lead me to believe I have had this 24 years now, I am now 46 years old.  They say you have a window of 20 to 40 years before it "comes out" and starts attacking your liver.  My 40 year mark would put me at age 62.  They will not treat me then, and I definitely do not want to die at 62.  I plan on living til I am at least 92!   I am health concious, I don't smoke or drink, I am of a healthy weight, and I excercise.  I live in the Poconos Area of Pennsylvania.  Have you heard of any trials in this area?
I so appreciate you responding to me.  It does relieve some of my worries, the only other issue is the relationship thing.  I am currently dating a man, who has a problem with me having this, and I get mixed answers about contracting Hep-C thru sex. The brochures say yes, but my doctor told me he has NEVER heard of anyone getting it that way in a normal relationship, that the brochures say, "maybe",  to cover their butts from liability suits.  I have also given birth (by c-sect.) to two babies since my accident.  they are now 21 and 17 years old, and tested neg, and so did my ex-husband of 20 years.  My boyfriend wants "proof".
Thank you, Cathy

[Mister beagle bailey]

What a small world, I have family that lives in your area.  They live on Milford, Pa and I don't think the is any trail in your area.  I think you answered your own question if you should treat or not, you seem to be leaning towards treating.  I'm a 2B and if I waited till a new drug came out I would be well into my 60's and they may not want to treat me.  Also other health problems may set in to make things worse.  So to make a long story short I decided to treat.  Good Luck

      Beagle

[Andy Capp]

I have to agree with most responders; get a second opinion.  I've learned, through the process of diagnosis and 48-week treatment, much about this virus and I also have learned that we must treat medical service providers just like any other service provider...with caution.  They are not infallable.

If I had mild fibrosis, I'd treat so that it doesn't get worse.  It's your life and your choice as to which doctor you trust with your health care.

Do yourself a favor and seek a second opinion from a reputable hepatologist or gastroenterologist.  You can search on the ALF web site or open this link to find a specialist near you.
  http://janis7hepc.com/list_of__gastroenterologist.htm

Best wishes,

Robert

[Upbeat]

Thanks all.  I will pass this info on to Cathy.  If anyone can give her more insight her email is    <***@****>


                                                           Ron

[mom4two]

Cathy,
You may want to take a drive to Philadelphia. There are alot of good teaching hospitals.  My Dr is out of Pennsylvania Hospital. Albert Einstein is another good hospital you may want to try.  I can see where a Dr may see it not to be nessacery to treat as of yet.  
But ultimatly it is your decision.  I can totaly understand your hopeless feeling just doing nothing.  The possiblity of svc are high for genotype 2 so your risk is not as great if you were a geno 1.  Good Luck
Lori

[cuteus]

whoa! she is a 2b and the drs are discouraging her, even though she is obviously in mental agony over having this chronic illness!  She has such a good chance at beating this disease and they are stopping her. Get a new dr outside the area. The virus can be eliminated and you can achieve a cure, I can quote Dr Dieterich, Dr Bernstein and Dr Cecil. they have all publically stated that hcv can be cured. Dr D had hep c himself and achieved what he calls a cure.
what insanity!

clinicaltrials.gov might offer some insight on trials. some private drs also participate.

[Upbeat]

My post of her email did not take.  Her name is Cathy and her email is

***@****

                                 Iam sure any help would be appreciated.
              
                                                Ron

[new-sojourn]

I was infected w/tainted blood products in 1967 and wasn't dx until after my liver failed in 2001.  I had been seeing medical professionals for a variety of symtoms (symptoms) I now know was cirrhosis and end stage liver disease.  I also had both elective and emergency surgery and no one caught the hep c.

Anyway, I was a 2b, tx'd w /intron and riba, cl'd in 2wks and that was nearly 4 yrs ago. The amazing thing was the depression just was gone.  the aches and pains of RA were gone, the voilent mood swings and constant fatique were all gone almost immediately, even during the rest of tx-24wks altogether-3 shots a wk and 5 ribas a day.

I drove half way across the state to see a specailist and the only AD/anti-nausea/sleep aid I used was medical marijana.

My meds were free.  My costs were low and now I'm cured.  And that's priceless!

[fl-sam]

Ron,
I don't think Cathy's VL is correct.  It is my understanding that the Quantitative Test cuts off at 100 million.  Like her, I am a 2b with mild fibrosis.   Took shot 16 of 24 last night.  My starting VL was 77.6 million.  At week 12 I was at less than 10/undetectable.  I have seen several Drs about this and not one suggested that I should not do treatment.  As a 2b, Cathy has a high probability of clearing the virus despite a high viral load.  Also, I believe that the dosage of both interferon and riba is lower with treatment of 2.  I am only taking 800 mg Riba/day which is lower than many others here are taking so sides may not be as bad.

As to passing the disease to her BF, it is highly unlikely.  I have been with the same woman for 5 years and she does not have it.  In fact, prior to last July we did not know I had it so we did not take any special precautions to avoid transmission.  Now we just make sure not to share razors or risk her contacting my blood in any other way.

Sam

[NYgirl]

As a Geno 2 you have such a GREAT chance of clearing this virus!  An 80% SVR rate is a WONDERFUL number. I cannot understand any doctor saying "no you are fine just live with this disease until you are NOT healthy" to me that makes no sense! Especially since things say the earlier you treat the better.

While the meds can make some people really ill - others have hardly any side effects.  Some people like me find it a pain and don't feel 'great' but certainly still work and do everything I did before.

If you want to treat - then don't give up. Tell your doctor that you realize that you are lucky to have the genotype you do and that with such a high cure rate you have decided you want to attempt it. Tell him hey if it gets too hard I can always stop...

If he refuses to do what you need...move on to another doctor.  I just don't believe in a doctor that refuses to treat your body as YOU want. I mean hey - your body, your life!

Start making some calls now to different Heptologists or Gastroenterologists.  Maybe google about in here and see if you can find one that will work.

I wish you the best. Hang in there and don't give up.

It's YOUR Body and your LIFE, not his.

[PKCO]

Keep doing what you've been doing. Get a biopsy every 3-5 years. Viral load is not an indicator of damage. However, your ALT and AST can be very good indicators of ongoing (viral activity) damage. Yours are in the low range. Not high-low, or medium-low, but low-low. You have absolutely no reason to treat at this point or any other point in all likelihood. You have been infected for 24 years and have not progressed beyond stage one on repeated biopsies. The risks v. rewards don't add up. Keep getting regular labs and biospies. You will not progress a stage overnight. You will have alot of time to react should your fibrosis increase. The decreased odds of clearing at stage two v. stage one is extremely insignificant. These meds should be respected for what they can and cannot do. You don't take meds that result in appx. one suicide per 100 patients unless it is APPROPRIATE. And stage one after 24 years of infection is not what I'd call appropriate, barring the presence of any other known extenuating circumstances.

And your doctor is wrong about a couple of things. The virus CAN be eradicated. If you decided to treat, as others have mentioned, your success rate is  >85%.  

Taking a "watchful  waiting"  approach would be a prudent choice in my opinion. BTW, docs not wanting to treat stage one patients should be saluted. It shows they have an understanding of the dangers of this therapy and don't want to rush you on to tx just to get a check. Take a deep breath, relax, and just keep doing what you've been doing.  :)

Best regards,
PK

[can-do-man]

Cathy said:
the "symptoms" depression, memory loss, fatigue, I haven't worked out in 2 years, and just sit and waste the days.

pkcolo said:
Take a deep breath, relax, and just keep doing what you've been doing. :)

Ina
_____________________________________________________________


Eisbein, LOL, summin just don't seem right there does it?

[can-do-man]

Stop following me around can-do :) I am tired and like the easy way out.

Id much rather be 'following' you then be in front of you if a piece of my rear end was what you were after. :) Why does a iron skillet in one hand and a rolling pin in the other come to mind? Hope you have a great day

[cuteus]

could someone post the link to the 1 in every 100 commits suicide? I still have not found anything but "less than 1% become suicidal" does not even say they completed it...
on the other hand, my ortho evra patch insert has one section dedicated to the possibility of death from contraceptives use. talk about risk reward. dying or having a baby..

[cuteus]

I was reading the Pegasys insert and it does not read the same. I guess the sides are a tad easier with that peg.
your quote does seem to include everything from ideation to completion in that one %, which still leaves suicide completion at less than 1%?

[fl-sam]

This is straight off off the peg-inntron.com web site.

Psychiatric adverse events, which include insomnia, were common (57%) with PEG-INTRON®, but similar to INTRON® A (58%). Depression was most common at 29%. Suicidal behavior including ideation, suicidal attempts, and completed suicides occurred in 1% of patients during or shortly after completing treatment with PEG-INTRON®

Appears that 1% at least consider it.

Sam

[cuteus]

Is diabetes serious ?
Is hypo/hyper-thyroidism serious?
How about autoimmune hepatitis ? Serious ?
How about crippling arthritis ?

yes, and all finding a connection to chronic hep c infection. even at stage one. but we spend so much time reading inserts, we don't have time to read the research on extrahepatic manifestations. Oh! that's right! they don't exist with stage one or maybe they just don't exist, period. My bad.

[PKCO]

"Had several biopsies done(every 5 yrs), results stay the same except the viral load keeps going higher, I believe it's 700 million. My doctor feels that because my liver is close to normal no need for treatment, because there wouldn't be anything to compare test A to test B to.(damage) He said treatment will only lower the viral load some, not irraticate it.
When I first found out, I had the biopsy done, I used to drink socially, I quit everything, smoking , drinking and took up the gym(running 3 miles a day and lifting every day, 5 days a wk) I did this for 3 yrs. and had another biopsy done, the results stayed the same (except for the viral load going way up) He wouldn't treat me. Said I was too healthy. "


It was quite obvious what I was referring to. Some people need a picture drawn. Others like you,need it colored in, too. ;)
PK

[PKCO]

"80% SVR chance versus less than 1% chance of serious complications"

Ahhh....another poor soul who started tx without reading the insert.

Well, it's never too late to educate yourself.

Is diabetes serious ?
Is blindness serious?
Is hypo/hyper-thyroidism serious?
How about autoimmune hepatitis ? Serious ?
How about crippling arthritis ?

I could go on and on but as I think you may know the company has already printed all this info out for you to read.

You say you are "pro-tx". That's why we disagree. I am neither "pro" nor "anti-tx". I am for tx when it is APPROPRIATE.
PK

[PKCO]

"depression, memory loss, fatigue, I haven't worked out in 2 years, and just sit and waste the days away.....just don't know where to focus anymore.."

Lack of concentration, motivation, fatigue, and listlessness all point to depression. Depression is not just feeling 'blue'. Those are all classic symptoms. The LAST thing you need if you are depressed is interferon and ribavirin.

PK

"in mental distress, probably pre-menopausal, paralyzed by fear"

Wow. You picked up all of that in the post ? You are GOOD.

[linthomas]

Hi everyone, don't usually have a lot to say, but about treating, I found out about my Hep C in October 2002, was thrown literally in dialysis in Feb. of 2003. I was scared to death to try tx, but all in all it hasn't been that bad for me. And I'll find out Friday if I've cleared at 24 wks,almost had at 12. Do you guys know that 1 person in about a 1000 will lose their kidneys to Hep c, not to scare anyone but if this had been found and treated when they first started finding out about it I wouldn't be waiting on kidney transplant now. I've had this for about 30 yrs and never knew, they thought my kidneys were somehow just diseased or the drugs that I had did in the 70's destroyed them. WRONG! the hep c destroyed them, of course the drugs caused the hep c, anyway the point is the disease is to me alot worse than tx. All signs of kidney disease are gone except for rise in creatinine. starting to feel more energetic, I just wanted to say to everyone who doesn't know this about the kidneys, research, find everything you can before deciding not to treat, cause believe me no one wants to have to go through this. I know there's alot of other people sick with different things, but what you don't know can really mess you up. Linda

[cuteus]

thanks Linda, i have read the same relation and one good friend might have lost her husband to ESRD due to hep c. And you dont have to be in end stage liver disease for it to happen. It is a sad reality. I am glad you are feeling better. there is always a posibility your kidneys will recover once HCV is gone, let's hope.

[PKCO]

Cuteus,

Why do you want to overlook the real dangers of tx ? And if you are spending so much time reading inserts why hasn't any of it sunk in yet ? Personally, I don't think YOU (and quite a few others in here) have EVER read the ENTIRE prescribing information for the drugs that are used in therapy. If you had you wouldn't be making such asinine comments .

"And you dont have to be in end stage liver disease for it to happen."

Show me a case of HCV-induced kidney failure at stage ONE. Put up or SHUT UP. I will guarantee you will NEVER find it. But since you are convinced these things can occur at stage one PROVE it to the rest of us. That should be a SIMPLE thing to do with all of the myriad of studies, abstracts, poster presentations, clinical trilas, etc., that can be found easily on the web. Happy hunting.

PK

[Forseegood]

Jeez, even if we don't agree with each other, there's such a thing as civility...disease is unpleasant enough to endure day to day without having to read these types of biting comments and character assessments mixed in with the information, support and debates...it's really kind of jarring...

Not to say that you are the only one that indulges in this type of behavior because of course youre not, but really, a cogent argument is more elegant and impressive if it's delivered "somewhat" politely, whether we ultimately agree or not...and then there is always the saving grace of agreeing to disagree on some issues...with all due respect....

[Forseegood]

well, I find a spirited debate interesting, but yeah, I don't like personal attacks or below the belt, that's true...of course I don't run this board and I can't call the shots...

I was just talking about an "ideal" that of course might not be in the stars for this board, I suppose I could go elsewhere and not complain about this one, that's true as well...and that doesn't mean that I want overly sentimental or lots of cutsie smiley faces, just civil debate when it comes to that...

anyway it's a lot harder to state your argument on the merits of it's premise and points rather than just getting into a lot of mudslinging so maybe that's why it's not done as much...

as far as PK, he posts at Janis and he's ever the gentlemen so it's not like he's not capable...if some people like getting down and dirty, that's their thing, it's just not mine...with all due respect...I hope youre feeling better and better...

[Forseegood]

wouldn't it be nicer and much more productive to come here if we could all reframe from going really negative on each other..and just assail this disease in all its manifestations...but of course, I've always been a dreamer...

Same logic applies to people rioting and destroying their own cities and towns, taking their frustrations out on each other instead of quietly promoting change from within...big picture thinking is beyond a lot of people, I just wish it wasn't...

[cuteus]

where do I say that end stage renal disease can happen at stage one? what I said was it does not have to be at ESLD to happen.
Interesting that you demand studies but when I request the same it is ignored, well, I should  do the same and ignore your demand.

or maybe this little article that does break it down by liver damage can at least enlighten you that extrahepatic manifestations are not bound by advanced liver damage.
http://www.hcvadvocate.org/hcsp/articles/cognitive_impairment.html

and this one which states that renal involvenment starts early in HCV infection:
"Although renal involvement is common in hepatitis C, its lack of clinical manifestations means it goes undiagnosed in the majority of patients. Renal involvement can occur early in the course of the disease and occasionally is the presenting symptom of HCV infection. "
a key statement, it goes undiagnosed in the majority....
I am sure if you were really interested in learning about other manifestations of hep c without advanced liver damage, you will have found them.
Your continuous refusal to acknowledge  symptoms due to hep c, in the early stages of the disease, tells me that you are not interested. Do you really think I should spend time looking these things up for you, when you don't care?
this forum is not a college course on hep c, it is patient to patient and opinions abound. I have yet to see you produce any studies to back your opinions.

[cuteus]

you are a better woman than I am.
much  luv!

[PKCO]

"yes, and all finding a connection to chronic hep c infection. even at stage one. but we spend so much time reading inserts, we don't have time to read the research on extrahepatic manifestations. Oh! that's right! they don't exist with stage one or maybe they just don't exist, period. My bad."

If you give a post of mine a smart a** reply like this don't expect a love letter in return. Fair enough ?  ;)

[linthomas]

Sorry, everyone didn't mean to start that arguement. But in all things I have found out about the renal and hep connection, I do know now that within a year after hepatitis, (BTW I had Hep A at 12 yrs old so maybe I was more prone for Hep C) but I knew when I had the viral infection too, but I thought it had all went away. But the kidneys where affected within the first yr. I was so sick and turned jaundiced really bad both times, after it settled down somewhat I had lost 66 lbs and they found protein in my urine which is a usually a sure sign of kidney damage, At kidney biopsy it wasn't known that I was still carrying this virus they didn't check for it. So 30 yrs later here I am, battling 2 diseases that can potentially be fatal, my point is that while it was a very slow moving process the kidneys where damaged right from the start. And while you don't get ESRF at stage one that can be when it starts and then you can go thru the other stages either very slow like me I'm at stage 5 now with 11% kidney function and hanging on by the skin of my teeth so I can try to clear this and get my transplant. My creatinine at last lab was 6.4, BTW thanks Cuteus.

[Forseegood]

so sorry to hear this, my sister had some of the same things you are suffering from and a lot of it got better (with her kidneys.) be well...

[PKCO]

cuteus said:

"maybe this little article that does break it down by liver damage can at least enlighten you that extrahepatic manifestations are not bound by advanced liver damage."

Cuteus I have NEVER said extrahepatic symptoms only occurred in ESLD. I have never said they don't exist in stage 1,2 or 3 for that matter. I have only stated (in response to your post) that renal failure is not associated with HCV when the patient is only a 0,1.

Cuteus said:
"what I said was it does not have to be at ESLD to happen."

You made the initial assertion linking renal failure as a reason to treat. Remember the thread ? The topic was concerning whether to treat at stage 0,1, and you stated renal failure caused by HCV was a reason to treat. Here we were talking about whether this person should treat at stage 0 or 1 and you bring up renal failure to bolster your position to treat at those stages ? I found that inappropriate and to alleviate any fear I asked you to post anything that linked renal failure to HCV at stage 1. You ignored that and in a later post stated the same AGAIN. So now, the third time,it has morphed into::"what I said was it does not have to be at ESLD to happen."

Fine.

If you can show me a case of HCV-induced renal failure at stage 1,2,3 post it. Perhaps you can find what I can't---a proven link that some renal failures occurred in test patients in large trials in early disease stages. With all of the thousands of patients in these trials if renal failure occurred in all stages it should fairly easy to find. Not dysfunction----failure. I know when  you link renal failure to cirrhosis  you will find a much-documented relationship between the two.

I have never said that HCV cannot affect kidney function. I know better than that. HCV is systemic rather than organic and I have never said anything contrary to that effect.
Concerning  renal failure attributed to HCV though, I can only find that linkage when it occurs in late stage (cirrhosis) liver disease.

Cuteus then said:
"Interesting that you demand studies but when I request the same it is ignored"

I honestly don't remember you asking me to post any study. If I post anything stated as fact and you want more info, let me know. I used to post links whenever I cited a study,etc,. Sometimes I still do, if it's handy. I have found that the majority of ppl I know in the hcv community are resourceful enough to pursue any topic that interests them. And most do whether a link is provided or not.  Net searches are so easy now and if I'm interested in something I will look for the best sources to get the prevailing points of view. But, as previously stated, I will provide data to support anything I state as fact in any medically-related assertion that I make.
Fair enough? Ask away.
PK