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Post Info TOPIC: i am so much worse after incivek i wish I was dead. i am not a troll.


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RE: i am so much worse after incivek i wish I was dead. i am not a troll.
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Achmed not sure what your looking for or just sounding off (which is good). My question is who do you have in your life that is going through this with you? Where are you getting support? Doing treatment is like going into a bad neighborhood, you don't want to be going in alone.

Vern



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Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.



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It's scary what effects these drugs may cause.
I hope u r taking vitamins and working w counselor on dealing w frustrations!
Guess I can hope for better outcome but I am on 48 weeks!!
One thing that works: get a part time job, volunteer or join bible study group.
These help I promise. Best wishes, JoAnne

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!



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I thank everyone for their kind words and encouragement.

Nevertheless, it's hard to continue telling myself that my residual discomfort from Incivek will eventually subside when all current indications encourage the polar opposite.

Unfortunately, within the escalating temper-tantrum embroiling our country, perhaps the November 6 presidential election might transform our country's collective mindset in a more tranquil direction.

I myself am not so sure...

In response to comments made earlier by forum members, again I must state that my first 2 Peg-Intron chemotherapies were nowhere near as debilitating as my most recent experience with Incivek.

With Incivek, I lost over 40 lbs. in the first month and had numerous other serious side effects. Some haven't gone away and probably never will.

Horrendous blurred vision is one example. Curiously, my tongue has become hyper-sensitive to certain spices. Consequently, any type of salsa is out of the question. Because of the bleach it contains, even brushing my teeth with mild toothpaste hurts.

Thankfully, I never had difficulty with the Incivek related rash many suffer from, however, I developed aphthous stomatitis that left two gaping holes under either side of my tongue after the ulcer's lining disintegrated and the pus drained out.

Unfortunately, my face looks fifteen years older than it did prior treatment; odd crevices and wrinkles appeared virtually overnight. Thankfully, my skin no longer has the yellowish blue-gray death tint that it did for six months. I had friends ask my parents if I was dying. They weren't overreacting either.

By far the most frightening side-effect is cognitive-blunting/cognitive impairment. It's has a variety of names. Because my mother passed away 3 years ago from Alzheimer's-related complications, my wife is terrified that it's possibly early onset dementia. She has become hyper-vigilant. Friends of mine in the medical community have told me I'm not in danger of developing Alzheimers, however, the before and after with Incivek still gives one pause for concern.

I continue to feel residual anemia as well as persistent nausea; both of which leave me feeling leaden fatigue. I feel so weak. Eight months after stopping chemo, my white and red blood counts have just now reached the lowest range of statistically normal guidelines. In a positive development, I'm puzzled yet grateful that my liver enzymes are now well within normal range. 

Additionally, it's worth stating that I was admitted to the local hospital for observation within the first 72 hours. I presented acute delirium. My wife said it was like watching an exorcism. The video she took of the incident remains too disturbing for me to watch. Even still, I don't remember any of it. The Drs. said it probably was a phantom reaction to either ambien and/or my ssri meds.

Yes, I do see a therapist. Even though he's been recognized as an excellent psychologist, cognitive behavioral therapy has been largely ineffective because my problems are so intransigent. I never feel good anymore. My diet? Well, I've been juicing 40-50 lbs. per week of organic foods but it hasn't done much if anything to ameliorate my symptoms.

I want to reassure forum members that I'm doing my dead level-best to maintain a positive outlook. I'm not a cry baby. Despite the physical wasting, I'm 6'2" and 220 lbs. Caucasian and 56 years old, I was an inside linebacker in high school. Please refrain from taunting or intimating I'm that Im a wuss. It's just so agonizing to have to admit that my vitality has been more than likely permanently hijacked by what will in 100 years be considered a medievil psuedo-science. I have no doubt that by then chemo will be compared to blood-letting and swamp leech-therapy. In it's present form, Incivek remains a Draconian remedy at best.

Think about it...

To be medically coerced into believing that by pumping your body full of cytotoxins you can selectively rid your body of diseased cells without dangerous and unpredictable health consequences is completely absurd.



-- Edited by Achmed on Monday 15th of October 2012 07:53:43 PM



-- Edited by Achmed on Monday 15th of October 2012 08:57:37 PM

 



-- Edited by Achmed on Monday 15th of October 2012 10:32:43 PM



-- Edited by Achmed on Monday 15th of October 2012 10:34:08 PM



-- Edited by Achmed on Monday 15th of October 2012 10:34:40 PM



-- Edited by Achmed on Monday 15th of October 2012 10:37:54 PM

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david prater


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previously i was a double null. peg-intron. 2000 & 2003. second treatment almost died. i developed septicemia with excrutiating pain in my perineum. 106 peak fever and sustained 101.0 -103.0 temp. was in dallas med. city 9 days.

i was treated for hep c 1b one year ago. six months since i stopped. i swallowed incivek for 90 days then interon injections and ribavirin. i became severely anemic, absolutely leaden fatigue with zero lung capacity.

what a fraud this is.

currently my CBC, liver profile,  RNA quant. and amonia analysis show i'm currently normal on all levels and remain clear of hep.c virus.

big effing deal.

the problem is I'm continuing to feel worse each day and my dr. at baylor dda in plano tx. says there's nothing he can do. I am ready to die. i am currently ideating. i'm so angry and depressed. The whole thing with chemo is a nightmare and cruel joke.

if i  try anything at this point it will be Gerson Therapy.

physical therapy makes me feel far worse than if I did nothing instead. i have tried pt for 3 months and won't try again. i have to go to bed after any exercise.

this treatment was my third chemotherapy. It's now been 6 months since i stopped. I'm on anti-dep meds. I even started nuvigil in hopes of dealing with chemo-brain. it helps to an extent but something is making me feel so much worse. i can no longer deal with it.

i have severe cognitive impairment and substantial short term memory loss.

my advice?

do not even consider chemo until the new treatment becomes available. i was much, much better before i did incivek. my liver biopsy was normal. my viral count was unbelievably high. 69,000,000. that's not a typo. my dr. called the week before treatment and told me i was his highest virus-quantitative patient.

this is not going to go away. i can tell. something is seriously wrong. i wish i never tried chemo. in the short term it may numerically give positive results but eventually the chemo itself will develop into another more virulent malaise. there has been a suspicion of certain types of luekemia being linked with chemo.

either way, the pharmaceutical corporations still get your money don't they?

this so cruel.

 



-- Edited by Achmed on Monday 15th of October 2012 04:44:03 AM

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david prater
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