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Chronic Hep C and low platetes
My first visit to site - want to thank you for answering so many questions - I will be starting Hepatitic 1a treatments the end of May, my Doctor told me there is a new treatment that will be out the end of 2013?? I have very low Platetes 56-77 they have been running, my cancer doctor say as long as I have Chronic Hep c it will stay low, do you think I should start treatments or wait for the new one to come out? I have signs of cirrohsis ( i don't drink) and I have a fatty liver......thank you for any advice. Michele
So sorry to hear about your Dad.
Someone should come along here with more info than me, but in the meantime I'm curious as to why they won't treat. Of course I don't know the ramifications of elevated Alpha Feto Protein; maybe that alone prevents treatment? If not, without lots of other lab info and details no one could begin to surmise. Is he working with a primary physician or doctors other than a hepatologist? He needs to make sure he is seeing the best dr for this. Untreated HCV will keep driving his platelets down, but treatment is also hard on them.
Does he have a vascular disease such as vasculitis? I wasn't clear on exactly what you meant on that. One type, Cryoglobulinemia, is often associated with hepatitis C infections. Signs and symptoms include a rash called purpura (red spots) on your lower extremities, arthritis, weakness and nerve damage (neuropathy). General symptoms of vasculitis are Fever, Fatigue, Weight loss, Muscle and joint pain, Loss of appetite, and Nerve problems, such as numbness or weakness. http://www.mayoclinic.com/health/vasculitis/DS00513
I know of someone who suffered with horrible vasculitis (open unhealing sores, numbness, etc.) for 20+ years. She was finally dx'd with HCV, treated, cleared it and the vasculitis went away, although she had residual nerve damage from it.
Someone should come along here with more info than me, but in the meantime I'm curious as to why they won't treat. Of course I don't know the ramifications of elevated Alpha Feto Protein; maybe that alone prevents treatment? If not, without lots of other lab info and details no one could begin to surmise. Is he working with a primary physician or doctors other than a hepatologist? He needs to make sure he is seeing the best dr for this. Untreated HCV will keep driving his platelets down, but treatment is also hard on them.
Does he have a vascular disease such as vasculitis? I wasn't clear on exactly what you meant on that. One type, Cryoglobulinemia, is often associated with hepatitis C infections. Signs and symptoms include a rash called purpura (red spots) on your lower extremities, arthritis, weakness and nerve damage (neuropathy). General symptoms of vasculitis are Fever, Fatigue, Weight loss, Muscle and joint pain, Loss of appetite, and Nerve problems, such as numbness or weakness. http://www.mayoclinic.com/health/vasculitis/DS00513
I know of someone who suffered with horrible vasculitis (open unhealing sores, numbness, etc.) for 20+ years. She was finally dx'd with HCV, treated, cleared it and the vasculitis went away, although she had residual nerve damage from it.
My father aged 76 tested positive for HCV in october 2011. Also had elevated Alpha Feto Protein @ 86 which reduced itself after 6 months to 26. Doctors are not recommending any treatment, but he is depressed. Lately, he has developed red spots on his torso and legs and is very disturbed as well. His platlette counts have been decreasing from 12K to now 85 k in 6 months. he looks weak. He also has vasculae disease for which he has been taking blodd thinners for as long as I remember.
Any comments
Any comments
Good luck to you, I'm sure you will do well especially if you keep in touch on here with those who can give you the support you need. I'm glad to hear you are going ahead and starting tx. As I said I started with the low platelet issue, too and I am grateful that they let me start. I just finished wk 8 so I had my blood draw yesterday to see what has happened since wk 4. If my platelets have dropped below 50 they will reduce the 180 interferon. My hgb (red cells) had also dropped below normal, so we will see where those are now and decide what to do about that, too.
I, too, live alone, but if you stay determined you can do it. FFH
I, too, live alone, but if you stay determined you can do it. FFH
Good Morning everyone - thank you all for answering me, went to my Doctors yesterday, he is a G.I. doctor and has treated alot of Hep C patients. Realize I only have Fatty Liver so far and geno type 1B. He is starting treatments as soon as the pharmacy. The medication he is putting me on is, Pegirterfeon alfa-2a, Ribavirin 1200 mg aday, incivek 750 mg a day. The Peg is 180mog a week. I also go to a Cancer Doctor for the low plaetetes, and he has ran every test to see if I had bone cancer and so far it's all clear. They both say as long as my platetes stay above 75 I could go through treatments. Little scary taking it the first time since I live alone, my red cells are also very high, who knows what is happening here. I love reading all your post and will continue to do so. Thank you all for the advice. Michele
"I am not sure why you are asking about other potential future treatments."
I was asking about upcoming studies/trials for Michelehen, not for me, in which platelets are not such a concern since you wrote, "Your platelet counts may be too low to do treatment."
(I'm staying with SOC unless I have to stop due to platelets lowering too much.)
Of course any treatment decisions would be made by/with doctors. But one does not always treat with the dr they first see. Mine knows I could not afford tx with him so I had to go find a trial. He and I were both elated that I got into one, and he knows the doc doing the trial (which was comforting for me to know). I'm sure I'd be doing the same SOC either way; I just get paid rather than pay. :)
I was asking about upcoming studies/trials for Michelehen, not for me, in which platelets are not such a concern since you wrote, "Your platelet counts may be too low to do treatment."
(I'm staying with SOC unless I have to stop due to platelets lowering too much.)
Of course any treatment decisions would be made by/with doctors. But one does not always treat with the dr they first see. Mine knows I could not afford tx with him so I had to go find a trial. He and I were both elated that I got into one, and he knows the doc doing the trial (which was comforting for me to know). I'm sure I'd be doing the same SOC either way; I just get paid rather than pay. :)
Sorry, I have no idea of your health status nor can I guess what the doctors were were thinking about.
The best advice I know for anyone with cirrhosis is to be under the care of a hepatologist at a transplant center. They will do a full workup to determine the patient's entire health status and then they will present all the options that are available for each individual patient.
michelehen has apparently had some form of cancer. An understanding of any interaction between HVC treatment, liver disease and their cancer is not something that should be taken lightly. Obviously any one doctor is not going to be an expert in these multiple issues. It takes a team approach which is only found at transplant centers. Although I have had cancer, HCV and liver disease I wouldn't presume to be knowledgeable enough to know what anyone else should do in their particular circumstances.
As far as yourself, as far as I know you are already treating with SOC so I am not sure why you are asking about other potential future treatments. It would be best in my opinion to focus on your current treatment and make sure you do everything you can to make it successful. Meanwhile you can use it as a learning experience. How you respond to treatment now is the best indicator of future success.
Good luck with your treatment!
Hector
The best advice I know for anyone with cirrhosis is to be under the care of a hepatologist at a transplant center. They will do a full workup to determine the patient's entire health status and then they will present all the options that are available for each individual patient.
michelehen has apparently had some form of cancer. An understanding of any interaction between HVC treatment, liver disease and their cancer is not something that should be taken lightly. Obviously any one doctor is not going to be an expert in these multiple issues. It takes a team approach which is only found at transplant centers. Although I have had cancer, HCV and liver disease I wouldn't presume to be knowledgeable enough to know what anyone else should do in their particular circumstances.
As far as yourself, as far as I know you are already treating with SOC so I am not sure why you are asking about other potential future treatments. It would be best in my opinion to focus on your current treatment and make sure you do everything you can to make it successful. Meanwhile you can use it as a learning experience. How you respond to treatment now is the best indicator of future success.
Good luck with your treatment!
Hector
In March I went into a study/trial with random selection for SOC or 7977/riba. 90 was (supposedly) the platelet cutoff for candidates, but they let me in at approx 82 (can't remember exactly right now) which surprised me. (I think there is some valid concern for cirrhosis with me, but since I had a bx years ago another one was not required to get into the study.) When I got the SOC arm they expected the platelet drop (which went to about 56 the first week), but seemed to oddly reassure me not to worry because there was another study coming up that would not affect the platelets. (Part of the exact words were, "Don't worry, we will get this one way or another.") Hector, do you think they are referring to more 7977 with riba studies? They made it sound like it was very soon. Do you think michelehen should look for a study rather than wait for FDA approval?
(Of course I'm genotype 2 so maybe the tx teams info would not apply to other genotypes.)
I am the first to admit that I know very little about the different tx's, outcomes, etc.; I'm just speaking from this one conversation with my team which seemed to not be too concerned about the low platelet issue which has previously been such a barrier to tx for so many. It sure makes me curious as to what is on the horizon.
(Of course I'm genotype 2 so maybe the tx teams info would not apply to other genotypes.)
I am the first to admit that I know very little about the different tx's, outcomes, etc.; I'm just speaking from this one conversation with my team which seemed to not be too concerned about the low platelet issue which has previously been such a barrier to tx for so many. It sure makes me curious as to what is on the horizon.
Your platelet counts may be too low to do treatment. Hepatitis C treatment reduces platelet count as a side effect and can cause someone with a already low platelet count to reach dangerously low levels. This can cause
treatment discontinuation and you could develop resistance to protease inhibitors.
So you will not be able to successfully treat your hepatitis. Since you have to do treatment for 48 weeks it makes managing your platelet count very difficult over such a long time period.
What type of doctor are you seeing?
How many patients with cirrhosis has he/she successfully treated?
What if treatment causes serious adverse events such as extreme anemia, neutropenia or liver damage what is he prepared to do at those points?
Have you discussed what your doctor is prepared to do you keep your platelet count from falling too low? Have they told you about Promacta/Eltrombopag and/or blood transfusions? Both of these are serious intervention strategies and requires resources that only doctors in hospitals can acquire.
You do have stage 4 liver disease. Known commonly as cirrhosis of the liver. It was probably caused by having hepatitis C for many decades. Patients with cirrhosis commonly have a much reduced chance of treatment success.
You should get a referral to a liver transplant center near you and have them evaluate your condition. Since you already have cancer the new treatment for genotype 1 hepatitis C patients may interact with any cancer drugs you may be taking. Someone like yourself with multiple health conditions needs to be cared for by the most knowledgeable and experienced doctors. They may need to work with you oncologist on certain issues. This is something that transplant hepatologists do all the time. They have a team approach to treatment. The Mayo Clinic is Florida is one of the best centers in the whole country.
Good luck!
Hector
treatment discontinuation and you could develop resistance to protease inhibitors.
So you will not be able to successfully treat your hepatitis. Since you have to do treatment for 48 weeks it makes managing your platelet count very difficult over such a long time period.
What type of doctor are you seeing?
How many patients with cirrhosis has he/she successfully treated?
What if treatment causes serious adverse events such as extreme anemia, neutropenia or liver damage what is he prepared to do at those points?
Have you discussed what your doctor is prepared to do you keep your platelet count from falling too low? Have they told you about Promacta/Eltrombopag and/or blood transfusions? Both of these are serious intervention strategies and requires resources that only doctors in hospitals can acquire.
You do have stage 4 liver disease. Known commonly as cirrhosis of the liver. It was probably caused by having hepatitis C for many decades. Patients with cirrhosis commonly have a much reduced chance of treatment success.
You should get a referral to a liver transplant center near you and have them evaluate your condition. Since you already have cancer the new treatment for genotype 1 hepatitis C patients may interact with any cancer drugs you may be taking. Someone like yourself with multiple health conditions needs to be cared for by the most knowledgeable and experienced doctors. They may need to work with you oncologist on certain issues. This is something that transplant hepatologists do all the time. They have a team approach to treatment. The Mayo Clinic is Florida is one of the best centers in the whole country.
Good luck!
Hector
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