I am still clear of the virus. I just did another blood test (for what would have been my 12 week status) and will have results next week. My doctor is optimistic.
I feel so great! I have my life back! It doesn’t take me all week to figure out how I will get to the market one block away and carry home some apple juice. I can walk to the farmers market and cook again and go back to my non-fat/non-dairy diet, which makes me feel so much healthier. I am convinced that once my liver healed, after that the drugs were just making me very sick and not doing much of anything else. We will have to wait and see. I will get a new blood test every month for 6 mths, per my doctor, to make sure the virus hasn’t returned.
The side effects I had AFTER quitting treatment were horrible. The fever got worse and was still constant for about 2 weeks after. My period had ended the week before I stopped. 4 days after I stopped, I felt awful and my legs were so swollen they looked like they might explode out of their own skin. I laid on the sofa all day, and at midnight I stood up and blood just started pouring out of me, with clots that were so large it looked like my liver and kidneys were being expelled through my vagina. I was horrified.
The next day I went to the GYN and she did biopsy and ultrasound, and we discovered that a fibroid I had had for years that had pretty consistently been 5 cm had grown to 9cm in the 10 weeks I was on interferon, which increases estrogen production, FYI. I have always been estrogen dominant, a great source of worry since my mother had breast cancer, and I am now on a nutritional plan to try and shrink that fibroid again. I am having another ultrasound in 2 weeks. This episode makes me feel even more correct in choosing to stop treatment. I think it was creating new disease and problems in my body that was so healthy prior to treatment.
I had no symptoms of Hep C at all before starting treatment, and my doctor said my liver disease was mild. When we discussed stopping treatment, he said he had another patient who only did 4 weeks on the regular intef/riba and she has been clear for 8 yrs now. So it is possible.
I received a comment from a Hep C support group called Daily Strength http://www.dailystrength.org/c/Hepatitis_C/forum/13021559-womans-tx-blog-very (FYI to them, I worked 3 days a week the whole time I was doing the treatment, and spent the other 4 days in bed). They talk about the theory that the reason we are kept on the treatment for so long is because the drug companies want the money. I agree this could be the case. I had a friend who died of breast/liver cancer this year and the day before she died she looked me in the eyes and said “The only regret I have is doing chemo.” I could never get that outta my head.
Sounds as though u only did the incevel. What about the additional 8 months on pegasis & riboveran? R u genotype 1? I tried 2 times b-4 incevek came a long. Was able to work daily, play tennnis 4 x a week. This incivek however is a different animal- Want to quit so badly bc my energy so low, no appetite so forcing food down makes me gag & I can’t wrap my head around eating fatty foods thru-out the day, & to add to the regimen, getting up at 4 AM for another dose + food. I count the days. Any advice?
Hi Bonnie.
I did all three: interferon, ribavarin and incivek together. I was genotype 1. My viral load was low. I cleared at 4 weeks and quit EVERYTHING at 10 weeks because I was too sick. I just got my blood work results for 4 months after quitting (6 mths after clearing) and I am undetectable and my blood work is COMPLETELY back to normal. I asked my doctor if the virus could return and she said absolutley not! I feel your pain and wish you luck. I made a decision based on listening to my own body and knowing myself, but am not recommending others follow my path. I just put my info out here to give people hope when they are so sick and down.
Thanks for sharing your story….What Genotype were you???
I have been clear in my lab tests, showing no detectable virus at 4 and 12 weeks. I have completed the 12 weeks of Incivik, and now I am considering stopping the Ribaviron and Interferon.
The suggested regimen is 12 more weeks / 24 weeks total !!!
Hi Bill.
Congrats on making it through 12 weeks of Incivek – that stuff is BRUTAL. I was genotype 1 and I had a very low viral load – never higher than 130,000 — I quit everything just short of 10 weeks and am still clear 6 months after quitting which is actually 8 1/2 motnhs after the beginning of treatment. The doctor said I had a 25% chance of relapse quitting so early but that didn’t happen. I say do what you feel is right for you, because no doctor will ever know your body as well as you know it yourself.
Good luck!
Hi,
I decided to quit after week 16 due to severe allergic reactions returning (ribavirin, incivek, peginferon). I tested negative at both 4 weeks and 12 weeks. At 11+ weeks my rash became so severe that it traveled up to my face, with swollen face and red burning eyes. I probably should have called it quits then, but my NP referred me to a dematologist who gave me prednisone for 12 weeks. After the prednisone, side effects started coming on strong. My NP was upset that I just would not go for round 2 of this nonsense telling me that medicine causes side effects (she told me she is unhappy with my decision). My eyes are still glossy and swollen as well as trying to get rid of this nasty rash. BTW, genotype 1 w/mild fibrosis. No doubt in my mind this decision is right for me… can’t wait to feel like myself again and look forward to testing negative at 6 months. Thank you for your input, it helps to feel like you’re not alone.
Hi! please post your questions/info in the FORUM so others can give answers and see answers thanks!
I am my sister’s caretaker, she stopped incevek one week shy of the 12 weeks due to low wcbs. and now with 5 weeks left she is having horrible issues withe her skin. she is on what they consider ‘low doses’ of ribba and interferon but for 3 solid days she is completley miserbale after her shot and we are now considering stopping . she cleared with in the first week of all three, has stayed under 0 since beginning and we feel the interferon is damagin her too severely to continue putting that crud into her body and brain. we worry about stopping and i know her doc is always about finishing..but it is my sis’s decision. she has huge swellings in her lymph nodes and at the nape of her neck, oozing sores by her crotch and severe itching. sounds to me after reading all this that there is a good chance it will never come back and she can’t afford 5 more weeks of damage. thoughts? thank you for posting it has helped me think this stuff trhough