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POST RX TREATMENT - the real problems ?
Post Rx Health
Hi every-one. I was on the Combo treatment for 12 weeks and was considered a 'non-responder'.
I'm 45 yr old male-fibrosis 2/4
Please don't say "I'm sorry it didn't work for you" , that is depressing and cold.
I had mild to moderate side effects from treatment.
Since stopping treatment I can FEEL (from pressure) my liver swelling on both sides. I have lost more weight since being OFF treatment than on. I have ALOT of muscle loss. I have skin pigmentation loss and my Platelet count/weight is DROPPING constantly. Please don't say ask the drs because I can't get any answers ......... they r too busy to explain to me what is going on. Does anyone know ?
Will weight/platelet count stabalize ?
Did RX trigger Autoimmune Hepatitis and is it reversable ?
Everyone-one talks about side-effects but do not match it to any relevant time information (ie: goes away, does not ???? )
What are the permant effects of side effects of treatment - noone told me !
WHY HIDE IT ?
Hi every-one. I was on the Combo treatment for 12 weeks and was considered a 'non-responder'.
I'm 45 yr old male-fibrosis 2/4
Please don't say "I'm sorry it didn't work for you" , that is depressing and cold.
I had mild to moderate side effects from treatment.
Since stopping treatment I can FEEL (from pressure) my liver swelling on both sides. I have lost more weight since being OFF treatment than on. I have ALOT of muscle loss. I have skin pigmentation loss and my Platelet count/weight is DROPPING constantly. Please don't say ask the drs because I can't get any answers ......... they r too busy to explain to me what is going on. Does anyone know ?
Will weight/platelet count stabalize ?
Did RX trigger Autoimmune Hepatitis and is it reversable ?
Everyone-one talks about side-effects but do not match it to any relevant time information (ie: goes away, does not ???? )
What are the permant effects of side effects of treatment - noone told me !
WHY HIDE IT ?
Yup, you're not alone, I'm in the same boat with you, but at least you can make decisions tho, such as stopping tx early. No way I could have made a decision like that one. You're my hero, plus you are in the 'Trendy short course group." That's a very exclusive club!!! Cooool girl!!! You got it going on!
to prevent the greased beef jerky look, you could stick little mai tai umbrellas between your toes to shadow your feet.
i am not looking forward to feeling like this for 3 months. its like on tx. you never know what side you'll have what day. like my cognitive has been okay, but then i might not be able to sleep, or i just feel fatigue, or like today the "hangover" feeling.
i am not looking forward to feeling like this for 3 months. its like on tx. you never know what side you'll have what day. like my cognitive has been okay, but then i might not be able to sleep, or i just feel fatigue, or like today the "hangover" feeling.
For what it's worth, my tx experience was 23 shots of PEG, 22 weeks of riba, and it took about 3.5 years to get clear of most of the side effects. There were a lot of ups and downs during that post-tx period including joint pain, insomnia, and hypertension.
Whether you choose to treat again or not, make sure you find out exactly what's going on with your health. Your doctors being too busy to explain things to you is totally unacceptable, especially with the symptoms you're describing.
Whether you choose to treat again or not, make sure you find out exactly what's going on with your health. Your doctors being too busy to explain things to you is totally unacceptable, especially with the symptoms you're describing.
I'm so glad I'm not crazy. Well, maybe I'm crazy, but it's comforting to know others have or had this problem. Seriously, I posted to Jim once asking if it was normal to have the mental problems. I noticed that the difficulty with speaking and thinking got worse as the day went on. I sometimes wondered if it were stress or fatigue, or I was losing my mind. Jim didn't really respond, made a joke about my mind being under the couch, or something like that (IF I remember correctly)
Well, for me it's getting better, but still frustrating. And I'm on an AD but feel really down by the end of the day. Just feel like a big loser cause my life gets so out of control and I can't keep up. I've started taking naps in the car again, like I did on tx. My job is an hour and a half away, but please, I shouldn't have to keep pulling over to sleep.
However, on a positive note, I'm blessed to have had a relatively easy tx,( it was shortened to 16 weeks by me the one with no brains,) my family is very understanding, and I really think I'm doing better sooner because I treated less than most.
Hope this improves for others over time.
Good Luck to all
Bug
Well, for me it's getting better, but still frustrating. And I'm on an AD but feel really down by the end of the day. Just feel like a big loser cause my life gets so out of control and I can't keep up. I've started taking naps in the car again, like I did on tx. My job is an hour and a half away, but please, I shouldn't have to keep pulling over to sleep.
However, on a positive note, I'm blessed to have had a relatively easy tx,( it was shortened to 16 weeks by me the one with no brains,) my family is very understanding, and I really think I'm doing better sooner because I treated less than most.
Hope this improves for others over time.
Good Luck to all
Bug
canada
you need a doctor that has treated thousands of patients. they are the only
ones who really know the score, i wouldnt be surprized if good after care (even from a good liver doc) is a problem because they want to devote all their time to new patients. this is a guess on my part. it may take time to get the right doc.
rose
the five mile walk in and of itself had to be hard on you as well.
i overdid my exercise a little on purpose to see what would happen.
i was shaky and weak for two days but ok now. your problems sound rough but you also sound like your on the right track.
you need a doctor that has treated thousands of patients. they are the only
ones who really know the score, i wouldnt be surprized if good after care (even from a good liver doc) is a problem because they want to devote all their time to new patients. this is a guess on my part. it may take time to get the right doc.
rose
the five mile walk in and of itself had to be hard on you as well.
i overdid my exercise a little on purpose to see what would happen.
i was shaky and weak for two days but ok now. your problems sound rough but you also sound like your on the right track.
seems like everytime i mention (in past) how good i am doing, several days later i am not. and i usually don't post about the bad days. and lately i don't post as much nor read as much. but here i am today.
2b 8 wks post 21/24 weeks. last week i went for 5 mile walk, wrote about it then, i got very sunburn, did not say much about it. i blistered under the burn, something that has never happenend to me before. i did not feel well at all, by this previous monday i was feeling very poorly, having cognitive difficulty but going about my days and being more active. saw doctor, asked for longer disability (wrote about this), he said not justified. that night, in my sleep i could tell there is something wrong, felt worse than did when i was on tx. as many others have written.
next day kind of vasillated some good moments some not, by thursday i was running errands trying to prepare to return to work (looking for new job) obtaining fingerprints etc.. one planned trip to healthfood store as out of probiotics for several weeks. by time i get there it is about 1:30p i can hardly talk, my sentences are broken, serioius cognitive probems. definately would describe as dementia. i ask the clerk to recommend a probiotic to me. explain i am having problems since chemo, but doc's say nothing wrong. HE, the clerk, reminds me what i have been saying to others recently, but not following myself, to try apple cider vinegar in my water. so i buy both, take them as i am in my car add the vinegar to my bottle water at a stop light, had 20 min. drive to another errand. i was not driving well i really should not have been behind the wheel, could hardly form a sentence. within 30 minutes was feeling better within 3 hours was almost like nothing wrong a little buzzing in the brain but thoughts returned. next day the whole experience is a distant memory. it fixes that quick. body needs both the probiotic but i credit the vinegar (1 tsp) in water with setting me right by lifting the brain fog.
i don't know what caused this revisit of tx symptoms. i am thinking my body was under a lot of stress from the sunburn. i will do my outdoor activity in evening now.
in the past the apple cider has helped me with: diagnosis of GERD, take w/water no more problems with phlegm rising. helps immediately.
at tx end. i had a lot of mucus in my sinus, throat and esophagus, doc's said that they didn't see anything there even though i was so distressed, drank the vinegar water it was gone within 2-3 days.
2b 8 wks post 21/24 weeks. last week i went for 5 mile walk, wrote about it then, i got very sunburn, did not say much about it. i blistered under the burn, something that has never happenend to me before. i did not feel well at all, by this previous monday i was feeling very poorly, having cognitive difficulty but going about my days and being more active. saw doctor, asked for longer disability (wrote about this), he said not justified. that night, in my sleep i could tell there is something wrong, felt worse than did when i was on tx. as many others have written.
next day kind of vasillated some good moments some not, by thursday i was running errands trying to prepare to return to work (looking for new job) obtaining fingerprints etc.. one planned trip to healthfood store as out of probiotics for several weeks. by time i get there it is about 1:30p i can hardly talk, my sentences are broken, serioius cognitive probems. definately would describe as dementia. i ask the clerk to recommend a probiotic to me. explain i am having problems since chemo, but doc's say nothing wrong. HE, the clerk, reminds me what i have been saying to others recently, but not following myself, to try apple cider vinegar in my water. so i buy both, take them as i am in my car add the vinegar to my bottle water at a stop light, had 20 min. drive to another errand. i was not driving well i really should not have been behind the wheel, could hardly form a sentence. within 30 minutes was feeling better within 3 hours was almost like nothing wrong a little buzzing in the brain but thoughts returned. next day the whole experience is a distant memory. it fixes that quick. body needs both the probiotic but i credit the vinegar (1 tsp) in water with setting me right by lifting the brain fog.
i don't know what caused this revisit of tx symptoms. i am thinking my body was under a lot of stress from the sunburn. i will do my outdoor activity in evening now.
in the past the apple cider has helped me with: diagnosis of GERD, take w/water no more problems with phlegm rising. helps immediately.
at tx end. i had a lot of mucus in my sinus, throat and esophagus, doc's said that they didn't see anything there even though i was so distressed, drank the vinegar water it was gone within 2-3 days.
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