Aa
beginning 3rd time treatment soon low platelets
hello, haven't been on in awhile. i am going to b beginning my 3rd attempt at interferon/riba treatment for genotype 2a & 2b. my ct scan in february showed portal hypertension, enlarged spleen and beginning of cirrhosis. platelets now have dropped to 97 last week and 83 this week. seeing dr. 8/7, and am in contact with hemotologist to maybe get platelet booster. i wasn't able to complete before due to owning a business, became very sick with tx...hoping 3rd time will be a charm. i am in a better place emotionally, and spiritually and have made plans to take at least 2 months off work.
any suggestions for the platelet issue? I appreciate any comments or help.
any suggestions for the platelet issue? I appreciate any comments or help.
Good for you! Cleveland Clinic is one of the top centers anywhere. You will have the most experienced and knowledge docs around. By going to Cleveland Clinic if will be getting the best diagnosis, treatment and ongoing care available just about anywhere. You won't have to worry, "does this doc know what he is doing?" These are some of the leaders in the field of hepatitis and liver disease. Getting the best medical support will give you the best odds of stopping your liver disease progression. You deserve the best care but it does take some effort on your part to make it happen. The payoff will be priceless because you will know you gave it the best shot you could. I have seen too many suffer horribly because they didn't get the care they needed in time. I really don't want this to happen to you.
I am pulling for you!
凸 (^_^) 凸
...5:30 am..ugh got to get some sleep.
Ciao
Hector
I am pulling for you!
凸 (^_^) 凸
...5:30 am..ugh got to get some sleep.
Ciao
Hector
just made on line appt. for cleveland clinic....what a great idea!!! thanks again.
thank you for your kind words.....i am going to get thru it this time...one day at a time, no matter what!
I am sorry to hear about your business partner that must be a difficult situation. I just hope you understand the risk you are taking by not seeking out proper medical care. You do realize that cirrhosis can be a fatal illness? And NP of a gastro can't manage cirrhosis or the complications of cirrhosis while undergoing treatment. Only a hepatologist can manage the health of a person with cirrhosis.
I hope you know that if your liver should decompensate (due to treatment or just time) you will no longer be able to treat your hepatitis C any more times. At that point your only option will be a liver transplant to continue to live. Also when a person has decompensated End-Stage Liver Disease (ESLD) you will become disabled and will no longer be able to work. People with decompensated liver disease can wait many years for a transplant while being disabled and then after transplant it could take a year or more to recover enough to start working again.
I understand you have responsibilities to manage, all I am pointing out is that if you fail HCV treatment again your cirrhosis progressive and you may end up fighting for your life. At the time you will realize that all the other priorities in life fall by the wayside. Survival is the focus of all patients with ESLD.
The Cleveland Clinic one of the best transplant centers in the U.S. is about 150 miles from chautauqua county, NY. If I were you that is where I would go. They could work with your local GI for routine testing and monitoring. If you have issues Cleveland could then help you there the treatment.
It is your decision. You need to do what is best for you. You are the one who's life with be affected by your decision. We are all individuals with unique circumstances. I hope you make the best choice possible for youself. I hope you don't end up like me with End-Stage Liver Disease for 3 years now (disabled and able to work) and having developed liver cancer a terminal illness and still having to wait 6 months for a life saving transplant.
Good luck!
howie
I hope you know that if your liver should decompensate (due to treatment or just time) you will no longer be able to treat your hepatitis C any more times. At that point your only option will be a liver transplant to continue to live. Also when a person has decompensated End-Stage Liver Disease (ESLD) you will become disabled and will no longer be able to work. People with decompensated liver disease can wait many years for a transplant while being disabled and then after transplant it could take a year or more to recover enough to start working again.
I understand you have responsibilities to manage, all I am pointing out is that if you fail HCV treatment again your cirrhosis progressive and you may end up fighting for your life. At the time you will realize that all the other priorities in life fall by the wayside. Survival is the focus of all patients with ESLD.
The Cleveland Clinic one of the best transplant centers in the U.S. is about 150 miles from chautauqua county, NY. If I were you that is where I would go. They could work with your local GI for routine testing and monitoring. If you have issues Cleveland could then help you there the treatment.
It is your decision. You need to do what is best for you. You are the one who's life with be affected by your decision. We are all individuals with unique circumstances. I hope you make the best choice possible for youself. I hope you don't end up like me with End-Stage Liver Disease for 3 years now (disabled and able to work) and having developed liver cancer a terminal illness and still having to wait 6 months for a life saving transplant.
Good luck!
howie
also i am seeing a gi....i live in small rural community in southwestern new york in chautauqua county. i will research to see closest repatologist. although this time i am seeing same practice, but np who breathes, eats and sleeps hep c...is up on latest info etc. i know i have to do it....someway somehow.
i should rephrase myself, i dont think it makes any differencee, but the first time i tried tx, i became anemic after 3 weeks dr. made me stop. second time, i had epigen (procrit) but sx were so awful i just couldn't do it so i quit, which in retrospect was not the best thing to do. my business partner had just died very unexpectedly from brain aneurism, and i couldn't manage the business and do tx.
The first thing to do is to be treated by a hepatologist at a liver transplant center. The hepatologist will have the resources and experience in treatment patients with a low platelet count during treatment.
A hematologist is not the type of doctor you should have managing your possible thrombocytopenia during treatment. They have no expertise with liver disease or hepatitis C treatment. Your main health problem is hepatitis C which has caused cirrhosis of the liver. Thrombocytopenia may not be the only issue you have and it is a complication of your cirrhosis. It is not a isolated condition. Only by properly treating your hepatitis C will you eliminate your hepatitis C which is the cause of your cirrhosis and thrombocytopenia. To receive improper medical management of your hepatitis C treatment when you have cirrhosis is to set yourself up for failure at the start. You have already failed treatment twice before why go into treatment without the best chance of success? Having cirrhosis and failing treatment is something that should be avoided at all costs. You need to try to cure your hepatitis C virus now, before your liver disease becomes worse. Your best chance of cure is NOW. The more your disease progresses the less chance of treatment success. Please think about what will happen if you fail to cure your chronic hep C this time.
As OH mentioned. A hepatologist at the transplant center may also be able to get you into a clinic trial.
"GS-7977 + Ribavirin for 12 or 16 Weeks in Treatment Experienced Subjects With Chronic Genotype 2 or 3 HCV Infection (FUSION)" This is a trial for patients like yourself with cirrhosis using only ribavirin for 12 or 16 weeks. So platelet issues may not occur because it is the peg-INF that lowers the platelet count during treatment. Of course it depends on where you live too.
http://clinicaltrials.gov/ct2/show/NCT01604850?term=gilead+gs-7977&rank=1
There are 3 ways to prevent servere thrombocytopenia when treating with peg-INF. Dose reduction of peg-INF. Platelet transfusions.The use of Promacta/Eltrombopag. All have their pros and cons. It is very important to talk to your hepatologist before starting treatment to find out how they will manage your platelet count during treatment. When they will intervene and how, and at what point they may stop treatment.
Since you now have cirrhosis and if you will be treating with peg-INF and ribavirin you should expect treatment to be more difficult then in the past. Having cirrhosis (even though yours is early cirrhosis) means you are more likely to have other adverse events such as a anemia and possibly neutropenia. Again a hepatologist at a transplant center is used to dealing with cirrhotic patients that have these issues. You should discuss this with your hepatologist.
Good luck with your treatment!
Hector
A hematologist is not the type of doctor you should have managing your possible thrombocytopenia during treatment. They have no expertise with liver disease or hepatitis C treatment. Your main health problem is hepatitis C which has caused cirrhosis of the liver. Thrombocytopenia may not be the only issue you have and it is a complication of your cirrhosis. It is not a isolated condition. Only by properly treating your hepatitis C will you eliminate your hepatitis C which is the cause of your cirrhosis and thrombocytopenia. To receive improper medical management of your hepatitis C treatment when you have cirrhosis is to set yourself up for failure at the start. You have already failed treatment twice before why go into treatment without the best chance of success? Having cirrhosis and failing treatment is something that should be avoided at all costs. You need to try to cure your hepatitis C virus now, before your liver disease becomes worse. Your best chance of cure is NOW. The more your disease progresses the less chance of treatment success. Please think about what will happen if you fail to cure your chronic hep C this time.
As OH mentioned. A hepatologist at the transplant center may also be able to get you into a clinic trial.
"GS-7977 + Ribavirin for 12 or 16 Weeks in Treatment Experienced Subjects With Chronic Genotype 2 or 3 HCV Infection (FUSION)" This is a trial for patients like yourself with cirrhosis using only ribavirin for 12 or 16 weeks. So platelet issues may not occur because it is the peg-INF that lowers the platelet count during treatment. Of course it depends on where you live too.
http://clinicaltrials.gov/ct2/show/NCT01604850?term=gilead+gs-7977&rank=1
There are 3 ways to prevent servere thrombocytopenia when treating with peg-INF. Dose reduction of peg-INF. Platelet transfusions.The use of Promacta/Eltrombopag. All have their pros and cons. It is very important to talk to your hepatologist before starting treatment to find out how they will manage your platelet count during treatment. When they will intervene and how, and at what point they may stop treatment.
Since you now have cirrhosis and if you will be treating with peg-INF and ribavirin you should expect treatment to be more difficult then in the past. Having cirrhosis (even though yours is early cirrhosis) means you are more likely to have other adverse events such as a anemia and possibly neutropenia. Again a hepatologist at a transplant center is used to dealing with cirrhotic patients that have these issues. You should discuss this with your hepatologist.
Good luck with your treatment!
Hector
Agree with OH and also hope your seeing a very good hepatologist. Being cirrhotic also I started my last tx with platelets at 80 and got as low as the mid twenties. They did bounce around somewhat and I ended tx in the 50"s. The most important thing is to rid yourself now of Hep-C.
Best to you
Best to you
When I did tx in 2007, I began with platelets at 96. They dropped very low during tx. My GI wanted me to stop. However I switched to a renown hepatologist and was able to continue tx. Unfortunately my cirrhosis was already decompensated. He wanted me to do 48 weeks, although like you I was geno 2, because of the cirrhosis.
Two months off work may not be enough.
I had ESLD, and landed up getting a transplant.Tx didn't work on my decompensated liver.
You need to get serious about this or you may be facing the same thing as I did.
Then you won't be able to work.
I hope you're seeing a very good hepatologist with lots of experience treating hep C patients.
If it were me, and I could get into one of the oral trials, 7977,I'd go for it. The results for geno 2 and 3 are amazing. Not sure if you'd qualify having cirrhosis.
Good luck,
OH
Two months off work may not be enough.
I had ESLD, and landed up getting a transplant.Tx didn't work on my decompensated liver.
You need to get serious about this or you may be facing the same thing as I did.
Then you won't be able to work.
I hope you're seeing a very good hepatologist with lots of experience treating hep C patients.
If it were me, and I could get into one of the oral trials, 7977,I'd go for it. The results for geno 2 and 3 are amazing. Not sure if you'd qualify having cirrhosis.
Good luck,
OH
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