should i get a 2nd opinion?

[babycham18]

I am currently living in NC. Prior to living here I lived in NY,NJ,DE. I could not find a dr in either of those places who would treat me with interferon. I have Chronic Hep-C Stage 4, genotype1. The 1st dr I seen here said he would treat me & that I ony had a 40% chance of recovery. That`s ok w/me 40% means 40 out of 100 get cured, plus I have my faith in God which adds to it. My question is does anyone think I should get a 2nd opinion. The other drs told me it would be too toxic 4 me which was why they wouldn`t treat me. I dr I seen here is Dr. Holtzmuller. He has 27 yrs experience with GI & 5 yrs w/hepatology. I would appreciate any info as I hear some people are not candiadtes. I am due to have a biospy soon.
Thanks & keep your spirits up everyone :) !

[IAmTheWalrus]

It was for your sake!

[Andiamo1]

Why not, I think Eric has a nice ring to it :).

[IAmTheWalrus]

Sorry. I have become accustomed to abreviations that are common on this forum.

TX = Treatment.

Stage 4 Hep-C = usually means Stage 4 liver disease caused by hepatitis C. Stage 4 means that the liver tissue is scarred and/or necrotic. This is called cirrhosis. Compensated cirrhosis means that the live is still functioning. When it is uncompensated, the liver begins to fail. At this point there is no alternative but a liver transplant.

I don't think it is necessary to be on interferon to qualify for transplantation. I wasn't. There are a lot of rules for transplant eligibility established by UNOS (see link below). In addition, each transplant region or center has its own rules/preferences as well.

If you have the chance to clear the virus prior to, op without a transplant, then I would do it.

http://www.unos.org/policiesandbylaws/policies.asp?fromPage=Policy

Good luck,
Brent (Walrus, whatever!, but PLEASE don't call me Eric ;-))

[Andiamo1]

I used to live in Manhattan.  I also lived on a 44 foot sailboat for 2.5 years.  We sailed between the Caribbean and New England.

I went to Mt Sinai because one of the top hepatologists in the world practices there.

Duke is in Durham NC.  I am sure you can find a top doctor there.

Eric

[babycham18]

Oooops! Sorry I called you Brent in error. Must have brain fog today. lol.

Thanks Eric :)

[babycham18]

Hey, thanks for the prayers. My faith is very strong! Its what keeps me sane.

I`ll be keeping all of you in my prayers. Me & the big guy upstairs have gotten tight lately..
I`m sure he knows my voice by now, lol.

[babycham18]

Hey thanks Brent. I had a hard time finding this room again. Lucky you to be in NY. Why aren`t you going to Sloan? I used to go there w/my friend for her Chemo treatments.

Just curious, where abouts in Ny do you live? I`ve lived in all the borrows & on a 47" sailboot in City Island for about 7 mos.

Did you take Milk Thistle or any over the counter natural things that may be helpful? Dr. Holtzmuller thought it was a waste of $, but if it helps I`ll continue w/it.

40 yrs, huh? I thohgt I had it a long time & its only been going on 7 yrs...Good luck to you.

Thanks,

Randi

[babycham18]

Thanks alot. I just don`t have a good feeling about him. I`ve known other pple on HIV coctails & they told me to take milk thistle & after looking it up I started to as its suppose to help protect the liver from toxins. Dr. Holtzmuller said it was a waste & would probably cost $85.00. I found it in a pharmacy for only $15.00

Any thoughts on that?

Thanks

[babycham18]

Hey there. I have seen Dr. Holtzmuller & mentioned his name yesterday so that`s where you may have heard it. Know anything about him?

I appreciate you getting back to me. I wasn`t expecting so many responses. You`re all great in here :)

thanks,
Randi

[babycham18]

Thanks. This still doesn`t make much sense. Not sure what TX is. I still need a biopsy. My liver is hurting though & I read somewhere that u had to be on Interferon to be considered for a transplant. My viral low was last 195,000 but elevated alitlle bit. Not sure what it is now, but I heard viral loads can go to the billions.

I`m trying to see a hepatologist w/more than 5yrs in that area, although he has 27 yrs as an GI.
I was only told that I had Stage 4 Hep-C does that mean chirrosis?..I`, also on pain meds. Can you take any knid of med while on treatment? I`m in chronic pain from a brain tumor.

Thanks for your help,

Randi

[IAmTheWalrus]

With stage 4 cirrhosis, the alternative to treatment with interferon is to simply wait until you are ESLD (end stage liver disease) and get on the transplant list, hope you get a donor organ in time, and start over with a new liver still infected with hepatitis C (the new liver essentially always becomes chronically infected with the virus).

In the case of transplant, you may still be faced with the need to go through Tx to eliminate the virus, maybe not for years or maybe quite soon after. I don't know of any way to predict this, just roll the dice and go from there.

I don't believe that your chances for viral cure after transplant, using SOC, are any better than with your original liver. But it might buy you time enough to get the benefit of the new PI drugs in trials now.

If it were me, I think I would treat now if you have a good hepatologist that is willing. Perhaps you could get in on a trial TX with an PI drug (not sure if they are accepting cirrhotic patients or not).

My reasoning is that treating now is that the TX could result in the arrest or even reversal of some fibrossis and provide a possibility of viral cure which could permanently halt the disease progress. It is possible that you may still face the need for transplant later if you do not respond to treatment or if you just do not have enough liver function to sustain you, but you have still bought time, though at the cost and difficulties of TX, and could have the new I drugs available later.

Good luck,
Brent

[Andiamo1]

I had a difficult time until I found a Dr at Mt Sinai in NY.  He was able to get me into a trial of a new drug, Telaprevir, and that finally cured me after living with this disease for more than 40 years and treating 7 times with Interferon.

I am sure there are some great Doctors in NC.  They are probably associated with Duke or some other university medical school.  Find the best hepatologist in the state and take their advice.

Best of luck to you.
Eric

[Proactive]

Don't know if your doc is Dr . "Kent" Holtzmuller or not.
But the name rang a bell and did a google search

http://www.google.com/search?q=Dr.+Holtzmuller+peginterferon&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a

[iceprincess65]

Sounds to me as if you've answered your own question. No one can tell you what's best for you in any forum, you've sought sound medical advice, now it's up to you to do what you feel is best. Outside of that I would suggest that you turn to your family & friends those who know & love you for any personal advice outside of what your Dr. has already given you. My thoughts & prayers are with you, keep your faith.