Medical Forum / Diseases and Disorders / Hepatitis / November 2004
My last post concerning biopsy - should we treat?
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Wendela - 17 Nov 2004 16:47 GMT Hi, In my last post, I forgot to mention that his biopsy was between 1 and 2, although the first pathologist who was not connected with the liver center said it was a 1.
Also, the China trip would be in 1 to 1.5 years from now, should his company get the contract.
Russ - 17 Nov 2004 17:19 GMT Treatment for geno type 1a is 48 weeks. Some people do ok on the treatment, some not so good and I guess a majority fall somewhere in-between. At the clinic I go to I had heard 35% of their patients quit the chemo at some point. It's doable but can be a sumbitch to finish. Take some time and make an informed decision. Maybe get a second opinion from another doctor.
The decision to treat was one I pondered on for 1 1/2 years from diagnosis to start of treatment. Even though my liver biopsy results were Stage 1, minimal inflammation, I was having lot's of fatigue and joint pains. The joint pains went away within 6 weeks of starting the peg/riba. I have had some return of joint pains, but how much of that is wear and tear from work and getting older (I'm 49) I don't know.
Your bf's LFT's being high is a red flag. I would think some meds or procedures could induce higher LFTs, but not from a script of pain pills. The vaccines for A and B? Antibiotics? Good question but I don't know.
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> Hi, > In my last post, I forgot to mention that his biopsy was between 1 and [quoted text clipped - 3 lines] > Also, the China trip would be in 1 to 1.5 years from now, should his > company get the contract. Wendela - 18 Nov 2004 02:05 GMT Russ, Thank you for the reply. We've tried in vain to contact the liver clinic about the possibility of the vaccines or antibiotics raising the enzymes. It would be interesting to know, anyhow. Yes, 48 weeks is the treatment time. I worry because the University has so many patients, it takes them forever to get back to you every time there is a question. His M.D. is kind of famous and well published in the field, but more important than that, he's a great human being. If I ever wanted for anyone to break bad news to me, I would want it to be him. The 35% rate is really high :(. Even with Procrit? Hopefully, the health insurance will cover this. As a side comment, many people in the support group read the conference proceedings from the big conference held in Boston. If I find the URL to it, I'll post it. -Wendy
> Treatment for geno type 1a is 48 weeks. Some people do ok on the treatment, > some not so good and I guess a majority fall somewhere in-between. At the [quoted text clipped - 20 lines] > > Also, the China trip would be in 1 to 1.5 years from now, should his > > company get the contract. Don - 18 Nov 2004 03:35 GMT >Russ, >Thank you for the reply. We've tried in vain to contact the liver [quoted text clipped - 10 lines] >conference held in Boston. If I find the URL to it, I'll post it. >-Wendy Having a good doctor makes a big difference so that sounds like a big plus. It's very important to have someone with experience in treating this disease I think.
It can be very difficult to decide whether to seek treatment because of the many uncertainties. Medical history must be reviewed and a good health evaluation done.
Some things to consider:
Treatment tends to become more difficult, problematic, and less successful as patients get older.
I don't think the progression of the disease can be accurately predicted although it is generally believed to be slow. I've heard of people deciding to wait but have the disease progress faster than expected.
Treatment can be difficult and may not be successful. That is why genotype can be important as 2/3 types have much better success rates on shorter treatment.
It is possible to not only be unsuccessful in tx but to come out of it in worse shape than when you went in.
Some people need more time off than others. Some find it necessary to stop working altogether while others never miss a day.
------ Was that conference held 10/29 - 11/2 in Boston? I noticed there was one held there then. Abstracts of the 55th Annual Meeting of the American Society for the Study of Liver Diseases (55th AASLD), October 29 - November 2, 2004, Boston MA.
http://www.hivandhepatitis.com/2004icr/aasld/main.html
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Good luck to you and your BF. I sure things will go your way.
Don
Wendela - 18 Nov 2004 17:26 GMT Don, Thanks for the info on the conference. That must be it, since it was recent.
We did decide to treat with the Pegasys/Riba - what a joy he is in for.
His doctor was referring to some factors to predict what the damage is and when to treat, aside from the biopsy. He indicated that if he knew how my BF got the disease, he could better predict the progression. My BF had 5 surgeries in his teens, and dental operations, so it could be anything.
This contradicts what Thomas said and what I thought was basic accepted knowledge of the disease. His MD at University of Pittsburgh, and previously 2 other locations has been a hepatologist for years. Maybe I misunderstood. I wish I taped the conversation. Anyhow, seems the clinic is so big, you deal with a nurse practioner most of the time, and it takes her a day or so to reply to your call. This really sucks if you need help. They will not return your call even if it is an emergency. Too bad there seems to be such a shortage of hepatologists, otherwise, we'd have more choices. And there's the worry that the University will dictate some of the treatment methods to an extent, because perhaps you will be part of a longitudinal study. I'm very paranoid, so don't mind me. Well, enough of my running at the mouth for now. Hope my hyperness isn't making everyone as crazy as I feel. Wendy
> >Russ, > >Thank you for the reply. We've tried in vain to contact the liver [quoted text clipped - 52 lines] > > Don Don - 18 Nov 2004 20:24 GMT >Don, >Thanks for the info on the conference. That must be it, since it was [quoted text clipped - 23 lines] >running at the mouth for now. Hope my hyperness isn't making everyone >as crazy as I feel. Wendy It's understandable to be wary about getting into something like this. I certainly understand. Been there. It is also not uncommon to deal primarily with a nurse practitioner or physician's assistant. I deal primarily with a PA myself which doesn't seem to be a problem because treatment is fairly standard. A doctor is available if problems develop. However, I always get a same day call back even in nonemergency situations usually within 2 hours. I think it will be ok though. I assume he will have his monthly checkups with bloodwork to monitor how things are proceeding. That's crucial. You can probably get alot of answers and information about coping with treatment through this support group. Try to relax. Settle down a bit. TX is doable.
Don
Russ - 18 Nov 2004 17:21 GMT I think as far as the LFT's (Liver Function Test's), repeated testing and continued high readings will rule out any other possible short term causes.
I also think as for completing the treatment, some clinics will see better results just because they treat ALL the side affects in a more proficient manor.
For instance, a family member of mine had to stop treatment because of thyroid failure. His "Big Chief Liver Doc" or BCLD, when test's revealed a thyroid problem, sent him to his regular doctor to be treated for that!! By the time he got in to see his regular doctor his thyroid functions were so far out of whack he had to stop.
My thyroid went tit's up too, but my BCLD was right on the ball, got me started on Synthroid right away, but more important treated the symptoms of not only the chemo but the thyroiditis. A bad thyroid can really make you sick. I was prescribed Atenolol for my heart rate, it was way to fast, over 100 bpm at rest. Anti-nausea meds, narcotic pain meds for the relentless migraine headaches, sleep aids, anti-anxiety meds. I never needed "blood boosters" for low red/white blood counts, even though they were low.
In short looking back, I can see how stopping treatment could be a real option if the side affects are not treated. There are some doctors out there that flat refuse to prescribe medicines like sleep or narcotics though I think that may be improving. If you decide to treat I would ask your BCLD up front about side affects and how they will be treated. Not everyone has horrible side affects, but some of us have. Mine were right up there. Be ready for the possibility of not working. I made it about 3 months into treatment before I had to stop working. There was just no way I could work. But it only took 3 weeks for me to get back to work after treatment. I bounced right back fairly fast.
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> Russ, > Thank you for the reply. We've tried in vain to contact the liver [quoted text clipped - 35 lines] > > > Also, the China trip would be in 1 to 1.5 years from now, should his > > > company get the contract. Wendela - 19 Nov 2004 03:08 GMT Russ, If you could look through your computer, you would see me cracking up over the "BCLD" reference. Larry's doctor is probably the chief also. I talked with his regular doctor today who is less than enthusiastic about having to pick up the slack for his BCLD. Also, I found out it was the nurse practitioner who is encouraging him to treat now. I'm sorry but I've had horrible experiences with "certified nurse practitioners". (CNP) Should be "see not patients" I've seen 2 unnecessary deaths occur as the result of their lack of any real medical expertise. because An exception to this would be for a couple I've seen at a dermatologists office who were very good at what they did as far as I could tell. Otherwise, I normally insist that I see the doctor. Making matters worse the CNP just recently got her job there. Oh vey! Really gives you that warm feeing. Anyhow, Larry's regular doctor said he hasn't treated patients taking Intereron/Riba before, and he'll need to contact the BCLD to explain to him what to look for. Wonder if he'll wait 20 minutes on the phone with the message "call your emergency department if this is an emergency or leave a message with the doctor's CNP".
Anyhow, sorry you have had to suffer with the Chemo treatment at the same time. So, are you free of the virus?? You said 3 months and you stopped working...did you stop for the other 9 too? Are you okay now?
I'll review the board and see what your situation is. As for the narcotic type of medicine, this is my specialty as I've suffered with depressions and anxiety for years and now with Chronic Fatigue. If I had to take any meds, I try the Provigal (spell?) or Wellbutrin and the Klonopin. I could not take the SSRIs though.
Well, can't say I'm in the exact situation, but good luck fellow sufferers. One day, or one hour at a time as they say in the 12 step programs.
> I think as far as the LFT's (Liver Function Test's), repeated testing and > continued high readings will rule out any other possible short term causes. [quoted text clipped - 27 lines] > But it only took 3 weeks for me to get back to work after treatment. I > bounced right back fairly fast. elmoemerson@webtv.net - 19 Nov 2004 04:00 GMT Oh, gosh. Not another one. We just got rid of the other one. hehe damn! Elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
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