Aa
non responor
I have taken interferon & ribaviron , high dose interferon & ribaviron , peg intron & ribaviron , pegasys & some test drug . I have never responded the peg stuff lowers my white blood cells right off the bat and then they start cutting back. I talked to someone I know that also has hep c and said that a Dr. at Tulane treated her but he gave her something to boost the white cells so she could take the full dose for the whole time and she cleared the virus out. She had fibrous but I have cirrousis I want to know if that could work for me because I'm basically being told that is nothing I can really do and just keep checking me every 6 months for the cirrosis.
Sorry to hear about your situation. Your friend was probably given Neupogen to boost the white cells. Mine are low, they cut me off all drugs entirely until further notice. I told them I would hit my insurance for the Neup but my other blood work tanked, too. They had cut my Peg back but it still came back low, and after the others came back bad, they pulled me off to try to stabilize my blood. Not sure if Neupogen is something you can take with cirrhosis. I'm sure someone will chime in with better information for you. Good luck.
yes they can give you something called neupogen to stimulate the white blood cell production (it's given to cencer patients on similar treatments), and continue to treat.
The only reason that they don't just place people on this automatically when they have a WBC count go low is because it's not been approved as the "Standard of Care" for HCV patients. The doc has to press the insurances therefore to get you the meds and some insurances go along while others do not. (it's discriminatory, patients should be allowed this rescue drug no matter which disease their chemo is for).
yet it depends on many things:
It all depends on what all the labs say, your overall health and response to treatment, your docs knowledge base, and your insurance coverage. There's a lot to it.
you used the heading non-response. Non-response is not the same as a low white blood count or low platelet count. Non-response means your Viral Load (VL) the number of virons is not being lowered by the treatment.
So I'm not sure if you have one or two issues here.
Are you treating with a GP, a GI, or a Hepatologist?
You should probablypost the lab numbers from your blood tests.
The liver docs familiar with HCV disease will continue to treatwith significantly lower blood counts than the less trained doc will. They know most can tolerate lower numbers than the "standard cutoff protocols".
There is more risk of infection however at lower numbers.
This is why neupo is used, or procrit if your red count falls.
Getting It will mostly depend on whether you can get the doctor to advocate for you, but also if you KNOW about the meds, and make your doctor aware you know, then they are less likely to tell you to quit. After all, not mentioning to a patient ALL their options is grounds for a malpractice claim.
Neupogen has it's own set of risks however, so you need to be aware of them. Some health issues make neupo more risky.
If it were me I would get a second opinion, an emergency consult with a different hepatologist before stopping treatment.
If you cannot find a hepatolgist (liver doc) to consult, I'd try for a hemotologist (blood doc) who specializes in chemotherapies. Drive for a hour or 2 if you have to to get a second opinion. You have a right to a second opinion. If you can't do any of that, find the most experienced GI (gastro-intestinal doc) you can, but under no circumstances would I advise you to treat or seek counsel from a General Practioner. They simply don't have the knowledge base nor the time to have kept abreast with any one specific disease and may be years behind the curve in their understanding or current treatments or research.
Without us knowing any of your particulars there's no way for anyone, even a doctor in here to tell you what to do.
It is harder to clear this disease once stage 4 cirrhosis has been reached, but it can be done. On the other hand, it depends on the advancement of the stage 4, and the rest of your health profile as to whether treatment is wisdom. Some folks can live 15 or more years with cirrohsis without any treatment, but this does require no smoking drinking and generally taking good care of the liver with diet etc. So even if it turns out not to be safe to treat you, it doesn't mean there aren't things you could do to help your longevity and health.
However treating, if the liver can tolerate it, can improve your long term outlook.
If only
What did your labs and biopsy say? Did you have a needle biopsy?
Make sure you have your doctor explain your biopsy to you, and also if you post it in here some folks could help you understand it.
Sorry you are going through this hard time.
If it's any consolation, I have stage 4, and was told to quit treatment, but got a second, and did not quit. I've been UND, undetectable, for 70 wks now, but it remains to be seen if I will reach SVR, sustained viral response. The operative thing is the tx did give my spleen and liver a year of "rest" from the ravages of this virus, and I'm hoping for a full SVR.
You can private message me if you want more info about my experiences.
mb
The only reason that they don't just place people on this automatically when they have a WBC count go low is because it's not been approved as the "Standard of Care" for HCV patients. The doc has to press the insurances therefore to get you the meds and some insurances go along while others do not. (it's discriminatory, patients should be allowed this rescue drug no matter which disease their chemo is for).
yet it depends on many things:
It all depends on what all the labs say, your overall health and response to treatment, your docs knowledge base, and your insurance coverage. There's a lot to it.
you used the heading non-response. Non-response is not the same as a low white blood count or low platelet count. Non-response means your Viral Load (VL) the number of virons is not being lowered by the treatment.
So I'm not sure if you have one or two issues here.
Are you treating with a GP, a GI, or a Hepatologist?
You should probablypost the lab numbers from your blood tests.
The liver docs familiar with HCV disease will continue to treatwith significantly lower blood counts than the less trained doc will. They know most can tolerate lower numbers than the "standard cutoff protocols".
There is more risk of infection however at lower numbers.
This is why neupo is used, or procrit if your red count falls.
Getting It will mostly depend on whether you can get the doctor to advocate for you, but also if you KNOW about the meds, and make your doctor aware you know, then they are less likely to tell you to quit. After all, not mentioning to a patient ALL their options is grounds for a malpractice claim.
Neupogen has it's own set of risks however, so you need to be aware of them. Some health issues make neupo more risky.
If it were me I would get a second opinion, an emergency consult with a different hepatologist before stopping treatment.
If you cannot find a hepatolgist (liver doc) to consult, I'd try for a hemotologist (blood doc) who specializes in chemotherapies. Drive for a hour or 2 if you have to to get a second opinion. You have a right to a second opinion. If you can't do any of that, find the most experienced GI (gastro-intestinal doc) you can, but under no circumstances would I advise you to treat or seek counsel from a General Practioner. They simply don't have the knowledge base nor the time to have kept abreast with any one specific disease and may be years behind the curve in their understanding or current treatments or research.
Without us knowing any of your particulars there's no way for anyone, even a doctor in here to tell you what to do.
It is harder to clear this disease once stage 4 cirrhosis has been reached, but it can be done. On the other hand, it depends on the advancement of the stage 4, and the rest of your health profile as to whether treatment is wisdom. Some folks can live 15 or more years with cirrohsis without any treatment, but this does require no smoking drinking and generally taking good care of the liver with diet etc. So even if it turns out not to be safe to treat you, it doesn't mean there aren't things you could do to help your longevity and health.
However treating, if the liver can tolerate it, can improve your long term outlook.
If only
What did your labs and biopsy say? Did you have a needle biopsy?
Make sure you have your doctor explain your biopsy to you, and also if you post it in here some folks could help you understand it.
Sorry you are going through this hard time.
If it's any consolation, I have stage 4, and was told to quit treatment, but got a second, and did not quit. I've been UND, undetectable, for 70 wks now, but it remains to be seen if I will reach SVR, sustained viral response. The operative thing is the tx did give my spleen and liver a year of "rest" from the ravages of this virus, and I'm hoping for a full SVR.
You can private message me if you want more info about my experiences.
mb
forgot to mention, if not a treatment candidate you should discuss your MELD score and transplant with your doc.
Neupo or any drug in stage 4 can be problematic but a lot depends on where you are on the Meld score.
the 4 stages are just general indicators but with stage 4 there are many levels of disease.
cut and paste:
The Model for End-Stage Liver Disease (MELD) system was implemented February 27, 2002 to prioritize patients waiting for a liver transplant. MELD is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.
this is why you need to know your actual numbers to know how at risk you may be.
Ask your doctor to calculate your meld for you. They don't all do it, unless you ask.
mb
Neupo or any drug in stage 4 can be problematic but a lot depends on where you are on the Meld score.
the 4 stages are just general indicators but with stage 4 there are many levels of disease.
cut and paste:
The Model for End-Stage Liver Disease (MELD) system was implemented February 27, 2002 to prioritize patients waiting for a liver transplant. MELD is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.
this is why you need to know your actual numbers to know how at risk you may be.
Ask your doctor to calculate your meld for you. They don't all do it, unless you ask.
mb
All 4 times and the last was for a whole year I never went below a million count I have never responed to any of the treatments. I don't know my MELD score but have heard about it I believe it's for people on a transplant list which I'm not I still function well after dealing with this for 10 years now. the Dr. sees me now every 6 months and they've checked down my throat twice so for to look for varicose veins and colon once and of course always drawing blood. I believe you told me what I need to know though cause I'm sire if the insurance won't pay for it that's why they don't give you the neupogen. Thank You Mark
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