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Medical Forum / Diseases and Disorders / Hepatitis / June 2005Well I went to the Specialist
Wow did I have anxiety waiting for his appointment. As you know I was diagnosed with geno type 1b. I love my Doctor. He was such a straight shooter - and I didn't cry. He was impressed with the research that I have done. We had a few amusing moments. I asked about liver transplants since I was in the transplant unit of the hospital. My mother is the same blood type as I am and he said I would kill her to take the majority of her liver! He then laughed and said that liver transplants were for people who were dying and I am the poster child of health from what he can see. He stated that I didnt have any symptons of HEP C. My alt was 60 and AST 66. Norms can go to 42ish. He is hoping that I don't have too much damage to my liver. He has scheduled me for a biopsy in July and I can start treatment in August - 48 weeks. He stated I could probably work during the whole treatment that Friday nights are good for treatment and I should be fine by Monday. He has clients who have climbed Mt. Kilamajaro (sp) and ran marathons on the treatment plan. He also said there are 2 treatments by differnet companies. The cost is $25,000 for 48 weeks of treatment but well worth it in my opinion. The one treatment (older one is peginterferon afla 2a) and the newest one is peg something or other. What is the opinion of you savvy people out there. I get a choice and I want to make the best one. Where would I be without you guys - thanks so much for easing my fears and making me more knowledgeable. Mags ps he hinted that my wine drinking days will be curtailed even if I clear - bummer [...] He stated I could probably work during the whole > treatment that Friday nights are good for treatment and I should be fine by > Monday. He has clients who have climbed Mt. Kilamajaro (sp) and ran > marathons on the treatment plan. I think that doctors say that to keep people from getting worried, and also because after a point there's just no point in complaining to them about how you feel. Hopefully you won't have bad side effects but for some of us that wasn't the case. If I was you I'd make sure that you had everthing covered just in case you couldn't work, or needed help. > He also said there are 2 treatments by differnet companies. The cost is > $25,000 for 48 weeks of treatment but well worth it in my opinion. The one > treatment (older one is peginterferon afla 2a) and the newest one is peg > something or other. What is the opinion of you savvy people out there. I > get a choice and I want to make the best one. PegIntron is 2b; Pegasys is 2a. From my reading, it looks like the PegIntron might have a somewhat better outcome for people who weigh more because the dosing is weight-based. The Pegasys is a standard dose for everyone. It also appears that people have more side-effects from the PegIntron. I didn't have a choice, and I'm glad I didn't have to make one :) > ps he hinted that my wine drinking days will be curtailed even if I clear - > bummer If you don't have liver damage and you clear the virus I can't think of any reason why you couldn't have alcohol. I like Pegasys over PegIntron. Pegasys (Roche) was part of the regimen that got me an SVR on my 3rd attempt after using Intron, then PegIntron (both Scherring-Plough products). Pegasys is said to have a couple of percentage point advantage on PegIntron as far as SVR is concerned. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum I did pegintron was a 1a been rid of it since dec 01. Pegasys is the other one used now days also. Since there are more sides with Pegintron, Pegasys might be the better option. Many people were having more thyroid problems on pegintron in the clinical trial I joined, compared to less thyroid problems of the trial before mine which was Pegasys. good luck Juanita Top posted, comments interspersed: Hi Mags, Glad to hear your appointment went well; you sound a lot more relaxed. > Wow did I have anxiety waiting for his appointment. As you know I was > diagnosed with geno type 1b. I love my Doctor. He was such a straight [quoted text clipped - 3 lines] > blood type as I am and he said I would kill her to take the majority of > her liver! LOL! He then laughed and said that liver transplants were for people who > were dying and I am the poster child of health from what he can see. Biopsy is the only accurate of liver damage. > He stated that I didnt have any symptons of HEP C. Most people don't > My alt was 60 and AST 66. Norms can go to 42ish. He is hoping that I > don't have too much damage to my liver. He has scheduled me for a biopsy > in July and I can start treatment in August - 48 weeks. He stated I could > probably work during the whole treatment Oh, man, is he ever optimistic!!! Some people manage to do it, but I haven't found even one who said it was easy. > that Friday nights are good for treatment and I should be fine by Monday. Just in case, prepare for having to take off some extra time. Just in case. > He has clients who have climbed Mt. Kilamajaro (sp) and ran marathons on > the treatment plan. My doc told me similar stories, yeah, "some flu-like symptoms" and all that crap. I would have loved to jab a needleful of interferon into his flabby a.s and say, "Yeah, and how are you feeling *now* with those flu-like symptoms, eh?" <g> Seriously, some people have very mild side-effects, but they are rare. My strategy was to expect the worst and anything less than that was a bonus. > He also said there are 2 treatments by differnet companies. The cost is > $25,000 for 48 weeks of treatment but well worth it in my opinion. The [quoted text clipped - 4 lines] > Where would I be without you guys - thanks so much for easing my fears and > making me more knowledgeable. Thank yourself, Mags. The fact that you gained some knowledge, did your own research, is exactly why your fears were eased. Know your enemy. Knowledge is power. sh.t, it took me months before I could even say out loud, "hepatitis C" because it scared me so much. But, the more I said it the braver I became. > ps he hinted that my wine drinking days will be curtailed even if I > clear - bummer If you clear, and odds are that you will, and if you have minimal or no liver damage, reasonable consumption of good wine should not be a problem. Good luck, keep up the good work! Waterspider p.s. I completed the alpha 2a about two years ago and am all clear. Unfortunately I had hep C about 20 years before diagnosis and loved to drink wine, lots of wine, so I have cirrhosis. No biggie, I look after myself now, and even allow myself a glass or two of fine wine on very special occasions once or twice a year. You'll do fine. Keep us posted and keep asking questions. >He has scheduled me for a biopsy in July and I can start treatment >in August - 48 weeks. He stated I could probably work during the whole >treatment that Friday nights are good for treatment and I should be fine by >Monday. He has clients who have climbed Mt. Kilamajaro (sp) and ran >marathons on the treatment plan. It's nice of your doc to try to build you up, but whether lying is a good strategy... Someone who'd run a marathon or climb mountains during treatment would be a complete and utter fool, and would probably fail to be cured (extreme sports are damaging to the liver). It is very possible that your sides will be mild, and that you can work through treatment. But it's a good idea to also prepare for the possibility that things may not go that smoothly, that you may need additional medication such as an anti-depressant to combat the very common "riba-rage" and treatment fatigue, or Procrit and/or Neupogen to boost your white and red blood cells (rather than dose reduction) when tx brings them dangerously low. Optimism is great, and maintaining a positive attitude during tx is extremely important, but realism is a virtue, too. >He also said there are 2 treatments by differnet companies. The cost is >$25,000 for 48 weeks of treatment but well worth it in my opinion. The one >treatment (older one is peginterferon afla 2a) and the newest one is peg >something or other. What is the opinion of you savvy people out there. I >get a choice and I want to make the best one. There's no clear picture yet. A number of studies had relatively similar results, with a slight advantage for Peg-Intron (alfa-2b) over Pegasys (alfa-2a) on the SVR side, and a slight advantage of Pegasys on the side effects side. The big study comparing the two isn't complete, but you can't really go wrong with either of them. >ps he hinted that my wine drinking days will be curtailed even if I clear - >bummer That seems overly cautious. If you don't have significant damage, and you do achieve SVR, your liver likely will be as good as new. With significant damage (you'll know after your biopsy) the picture may be different. Thomas  SignatureTo reach me, complete my last name in the address. |
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