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stage 4 low platelets

I am 41, just found out stage 4,hepC type B Had it for 20 to 25 yrs. tried to get in study my platelet is 60 so they wont take me the doc said he would treat me. After he left the room I ask nurse if it was terminal she said yes and I might want to rethink getting on treatment. Like it might not be worth it. Anyway my question is: Can it reverse stage 4. And what about the platelet levels, if it is so low now, will they just have to take me off treatment.
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233616 tn?1312787196
yes, and it might help if he said what area they are in, then someone may know a good doctor there, but Jeremy you have to SAY where you are.

Cowriter,
ethrobopag has some benefit to early stagers whose platelet get low during tx, but for someone in his mom's shape they'd have to watch her like a hawk...I'm assuming she's not just stage 4, but may have low platelets as well since that's the old thread he pulled up.

if the black box warning's are to be believed this drug has the potential to backfire,

PROMACTA may cause hepatotoxicity.  Patients receiving therapy with PROMACTA must have regular monitoring of serum liver tests (see Laboratory Monitoring below).  Discontinue PROMACTA if ALT levels increase to ³3X upper limit of normal (ULN) and are: progressive; or persistent for ≥4 weeks, or; accompanied by increased direct bilirubin; or accompanied by clinical symptoms of liver injury or evidence for hepatic decompensation.  Reinitiating treatment with PROMACTA is not recommended and should be considered only with close medical supervision and under exceptional circumstances where the potential benefit outweighs the risk.  

I'm not saying they couldn't try it, they should try it, just that they have to really watch it since the liver can decompensate in it's presence...
Your mom is going to need a good HEPOtologist...not just a general GI, but a real liver specialist. The reason is they are more familiar with the disease than the average GI, and will treat down to a lower platelet level, they don't seem as to worry as soon about lower platelets as generally trained GI's do...also some of them treat more aggressively or are willing to try new things...so get her to a specialist.

mb

Helpful - 0
Avatar universal
jeremy, you're adding to a 2005 post (Nurse Ratched  has probably  moved on to a new career selling mortgage-backed securities). There's plenty of stage 4s here; you might want to start a new thread regarding questions about your Mom or referrals in Il.
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568322 tn?1370165440
Eltrombopag to raise platelets....how about we tell the FDA that they should include it in the Hep C "expanded medication program" they're planning to start.  They're asking for opinions.

Co
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29837 tn?1414534648
Banish the poisonous nurse...I agree


Magnum
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Avatar universal
my name is jeremy .need help my mom was told she had hepc with her liver in stage 4 . need to find a doc that will treat her in il. area
Helpful - 0
Avatar universal
i had a similar experience many years ago with the doc saying i needed a transplant or i would die (i felt the room darken and was shaken to say the least)
back then (mid 90's) there was less known about cures etc. but i foolishly put myself in denial for years especially because i felt great.
since then i experienced more symtoms-water retention etc. and decided to get with the slaying.
i also have very low platelets (started at 70 -then went to 50,34 and now in low 20's)and last week (week 6 of tx) the doc instructed me to skip a week of interferon pending platelet counts rising.
sooo docs are sticking with treatment longer with lower counts and i hope both our counts stabilize at some point at least in the 20's.
i was so excited to start treatment and experienced only one or two days slightly bad side effects after interferon shots (fatigue and slight headache). i wish you well. your genotype is encouraging eat well lots of water!!!

scoop49
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186606 tn?1263510190
Hey!  Another Geno 4!
Howdyado!

Deb
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Avatar universal
I am so scared I am 45 years old have had hcv for over 25 years. I now have cirhosiss and on the knodel score I have a 12(out of 15 being the worst). last week I went to the ER at the hospital because I had bad pain, long story short I had a kidney stone, while testing for that they found a 7cm mass on my ovalrie and they think it is a cyst, the doctor was going to take it out  but they checked my  platett counts because it is 68,000 and the doc said it should be over 100,000 the doctor said it is because of my liver that is why my platletts are so low.so now out local hospital is sending me to wakeforrest baptist hospital in windstom /salem a much bigger hospital, they are afraid something is going to happen but at least if it does the larger hospital can handle it. to hear that scared me alot. my question is can I be safely operated on. or not. anyone can write to me, ***@**** who has the same problem I have,
Helpful - 0
Avatar universal
Deb, i'm a geno type 4 with leukemia and cronic low plattlets mine have been in the low 50's for 6 years. i have been on treatment for 44 weeks (4 more to go) and have been clear since week 12.
i also was early stage cirrhosis. i see a hemotoligist and a hepc
dr. they have monitured my palttlets closely.
it is possible to treat with many health problems coexisting with hepc.
you just need to find a competent dr to treat you one that will work
with you and other specialigst's. i have managed to work full time durring treatment. it has been hard but working helps belive it or not. by working i'm saying to my self that this disease is not going to win and i refuse to let it ruin my life. my dr's all support this desision, saying that a positive mental attitude is very important.
so yes you can treat with low plattlets.
best wishes to you, keep us posted and let us know how your doing.
DAN
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Avatar universal
I'm a nurse...and I don't agree with what the other nurse said.  You have lots of things in your favor....you have one of the easiest genotypes to treat, you're female, and you're young....plus there's been only RARE cases where low platelets actually caused bleeding during treatment.  You have some challenges in front of you but it can certainly be done.  Best of luck to you.
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Avatar universal
i was type 2b.  have had low platelets for years.  they hover around 100-120.   during tx. they went down to 90 at the lowest.   i was afraid they would drop much lower but they didnt.   after tx.  they went up to 140 but now a year later they are back around 100.  they dont really know why.
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Avatar universal
stay with the doc, dump the nurse....
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Avatar universal
I was a '4' or beyond since I went into full liver faiure, and so then I was End Stage.  I too was a 2b, tx's for 24wks, cl'd the virus @ 18days.

I. too. was given the gloom and doom stuff.  B/here I am, older than you, sicker than you and no insurance.  B/I did a trail and now I'm much, much better.  The only health probs are connected w/a very damaged, b/disease free liver.

Stay w/that doc.  He wants to treat and you want a cure.  I did my part by revamping my diet and added steady exercise and basically did what Melissa Etheridge did-I banished all to me poisionous things, thoughts and people.

Good luck.
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Avatar universal
Well now I can't wait to start treatment. Thanks for all your comments. Debbie
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Avatar universal
WOW!!! A whole grade?! That is fantastic news!!!
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Avatar universal
Now I don't know a whole lot about this, but you having type 2 is encouraging, with a 75% success rate of clearing. I also am aghast at how the nurse could be so flippant and tell you it's 'terminal' - she should be terminated form her job!!!  I work in the medical field, and unfortunately I see this stuff happen all too much... don't give up - keep looking for excellent care, don't settle for less.. best of luck to you!!!!
sammy
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Avatar universal
My doctor says stage 4 can be reversed if the hep c is removed im stage 4 and 40yrs old.Nurses often say things that arent right.I'm not sure what your platlet leval means but don't let the nurse dicouage you.best wishes for health to you.
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Avatar universal
what i meant to say was type 2, I know what ya mean about the nurse I can't believe she said that. The Doctor is willing to treat down to platelet 20. It is through a clinic and I have no insurance or money so I think I will stay with him. He is involved with studys and is a gastr.  Did anyone out there start treatment with platelet so low Like mine at 60? My liver seems to work just fine infact I didn't even know I was having a problem. now I can tell I have a little pain in ribs from pressure of swollen liver. But never noticed it before the biopsy. We had to do the one that goes down the neck vien cause of platelets. Boy that was not bad at all.
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Avatar universal
First I don't know what you mean by "type B". Genotypes are designated numerically like type 1,2,3,4. Types 1 and 4 are the most resistant to treatment and the treatment duration is at least 48 weeks. Types 2 and 3 can generlly treat for only 26 weeks or less and the odds for clearance with types 2 and 3 are over 75%. Types 1 and 2 clear at about a 50% rate.
The product literature for interferon states that dose reduction or termination is appropriate for platelet levels under 50,000 so with your platelet level you'd have to be monitored closely and have a doctor willing to treat you if your platelets got low. I continued treatment with plateles around 25,000 so it can be done. But many docotrs are unwilling to continue treatment with low platelets so that is something you would want to get straight before commencing treatment.
Stage 4 indicates that your liver is cirrhotic and while cirrhosis can be terminal I feel that the nurse was a bit out of line with that comment and questioning whether you should do treatment. I personally would discount that advice and find a doctor that you trust. I certainly wouldn't rely on the nurse's analysis.
It is true that some patients' livers have deteriorated to the point where most doctors will not treat- they simply can not tolerate the treatment. Whether you are at that stage I have no way of knowing. Interferon has been shown to reverse fibrosis and there is evidence that it can also reverse cirrhosis in some cases.
I hope you can find a doctor to anser your questions and hopefully treat you. Don't dispair because there is hope and don't let the nurse's comments demoralize you. I wish you luck. Mike
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