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Does Hep C cause severe stomach and severe back pain
My good friends won't go on the forum becuase the wife has eye problems and the husband can't "get into it". Mainly, because he is very ill. So they have asked me to do it.
J. was diagnosed with cirrhosis of the liver from Hep C. He knew he had it for over 30 years and after beginning to have systoms such as fatigue decided to get into a trial. He just finished a 6 month trial of Pygesus, Ribavarin and something called BI201335. Beringer, Germany Trial. He cleared the virus! The six months were anyting but easy - he had to stop working and was fortunate to get disability.
During the six months he experience severe stomach pains and back pain. He was continually checked during the trial and complained about these pains - perhaps, they thought they were attributed to the side affects of the drugs. When he finally finished the trial he thought the pain would subsized (3 weeks since finished). The pain has gotten worst not better.
Finally, the doctor got the final results of whatever they do after you finish a trial and lord and behold was diagnosed with cancer. His doctor immediately called him in the office and wanted to start him on chemo. They said its "very mild" or very small. The doctor also suggested to him that they want to put him on the transplant list "just in case".
I believe in my naive wisdom that his stomach pain must be related to his cancer or maybe sx from the drugs that are only beginning to leave his body.
But, he thinks not - he wants to know- is it the cirrhosis that is causing the pain. Also, if you clear the virus as he did and is undetectible - one still has cirrhosis but not hep C? correct?
Sorry for any confusion - as it is not my personal case and I'm trying to relay the question as best as possible.
Any information would be greatly appreciated. To reiterate he wants to know does cirrhosis cause severe stomach and severe backpain. And, my question for him - or could it be the cancer albeit it being in early stage?
millie
He does not think the stomach
J. was diagnosed with cirrhosis of the liver from Hep C. He knew he had it for over 30 years and after beginning to have systoms such as fatigue decided to get into a trial. He just finished a 6 month trial of Pygesus, Ribavarin and something called BI201335. Beringer, Germany Trial. He cleared the virus! The six months were anyting but easy - he had to stop working and was fortunate to get disability.
During the six months he experience severe stomach pains and back pain. He was continually checked during the trial and complained about these pains - perhaps, they thought they were attributed to the side affects of the drugs. When he finally finished the trial he thought the pain would subsized (3 weeks since finished). The pain has gotten worst not better.
Finally, the doctor got the final results of whatever they do after you finish a trial and lord and behold was diagnosed with cancer. His doctor immediately called him in the office and wanted to start him on chemo. They said its "very mild" or very small. The doctor also suggested to him that they want to put him on the transplant list "just in case".
I believe in my naive wisdom that his stomach pain must be related to his cancer or maybe sx from the drugs that are only beginning to leave his body.
But, he thinks not - he wants to know- is it the cirrhosis that is causing the pain. Also, if you clear the virus as he did and is undetectible - one still has cirrhosis but not hep C? correct?
Sorry for any confusion - as it is not my personal case and I'm trying to relay the question as best as possible.
Any information would be greatly appreciated. To reiterate he wants to know does cirrhosis cause severe stomach and severe backpain. And, my question for him - or could it be the cancer albeit it being in early stage?
millie
He does not think the stomach
" I believe there is a bit of shock happening right now to both."
Of course this is the case. There will go through all the stage of grief over this. Including denial at first. Since they have a great doctor it is best for him to break the reality of the situation. He is experienced in doing it. I have only been on the side of the patient receiving the news that no one ever wants to hear.
I am very glad to hear he is on disability and has health insurance. What he will be going through is more than enough for any person to handle, so at least he doesn't have to deal with that part of the health care business.
While the waiting list for transplant is long in New York at least he will have some of the best care available in the country.
As far as the pain… I rather no speculate. I am sure his doctor has his ideas as to what is causing it. Only his doctor can diagnosis the cause anyway. Speculation can only add more suffering to your friends and I don't want to go there.
His doctor hasn't given him any pain meds? I wonder why?
"he walked out of the house at 3:00 AM in the morning with unknown intentions from the pain."
That sounds like Hepatic Encephalopathy (HE) to me. Does he have problems with memory, have strange behaviors, appear in a stupor, have sleep problems not related to pain? His doctor should assess him for HE and perform an Ammonia blood test.
- “I’ll walk into a room and forget why I am there.”
- “I am always tired…but I can’t sleep.”
- “I often forget what to say in mid-sentence.”
- “My handwriting has changed to scribble,”
- “My hands shake so much, I can’t hold my coffee cup without spilling it.”
Thinking all it. I realize there must be at lot more going on than either they know or are not telling you. The doctor needs to find out ASAP how advanced the liver cancer is. Maybe this has already been done. Because it doesn't make sense as to why he is looking for varices by doing a colonoscopy unless he is defecating blood.
It appears you understand the critical nature of J's illness. They will need to go through the emotional process which each person does at there own pace with different amounts of denial, anger, “why me?” etc.
Thanks for helping your friends. You have done your part. It is really up to them how they want to handle the situation.
Have a good day.
Hector
Of course this is the case. There will go through all the stage of grief over this. Including denial at first. Since they have a great doctor it is best for him to break the reality of the situation. He is experienced in doing it. I have only been on the side of the patient receiving the news that no one ever wants to hear.
I am very glad to hear he is on disability and has health insurance. What he will be going through is more than enough for any person to handle, so at least he doesn't have to deal with that part of the health care business.
While the waiting list for transplant is long in New York at least he will have some of the best care available in the country.
As far as the pain… I rather no speculate. I am sure his doctor has his ideas as to what is causing it. Only his doctor can diagnosis the cause anyway. Speculation can only add more suffering to your friends and I don't want to go there.
His doctor hasn't given him any pain meds? I wonder why?
"he walked out of the house at 3:00 AM in the morning with unknown intentions from the pain."
That sounds like Hepatic Encephalopathy (HE) to me. Does he have problems with memory, have strange behaviors, appear in a stupor, have sleep problems not related to pain? His doctor should assess him for HE and perform an Ammonia blood test.
- “I’ll walk into a room and forget why I am there.”
- “I am always tired…but I can’t sleep.”
- “I often forget what to say in mid-sentence.”
- “My handwriting has changed to scribble,”
- “My hands shake so much, I can’t hold my coffee cup without spilling it.”
Thinking all it. I realize there must be at lot more going on than either they know or are not telling you. The doctor needs to find out ASAP how advanced the liver cancer is. Maybe this has already been done. Because it doesn't make sense as to why he is looking for varices by doing a colonoscopy unless he is defecating blood.
It appears you understand the critical nature of J's illness. They will need to go through the emotional process which each person does at there own pace with different amounts of denial, anger, “why me?” etc.
Thanks for helping your friends. You have done your part. It is really up to them how they want to handle the situation.
Have a good day.
Hector
Hector and All: First my most profound thanks. I excitely called my friend and told them you answered. I read it and emailed it to the wife so she can slowly absorbed the information.
She said the pain is constant never ending. She said the other day he walked out of the house at 3:00 AM in the morning with unknown intentions from the pain. Oh, and YES - we are New Yorkers! The doctor is Dr. Samuel H. Sigal (my doctor too) who is Co-Director of Transplant Hepatology Department of Surgery at NYU. The doctor is going to do a colonoscopy as well. And, Yes he is on permanent disability and is also Veteran. He believes he got his hep C in Germany when he was in the Army from a tatoo. Just and FYI as we all know in the end it does not matter how we got it - we got it - period.
I begged her to go on the forum and to email you directly as questions will come up that I'm in no position to answer. Even after I read the entire post she still was unclear and wanted to focus on the correlation between cirrhosis and the pain which I believe you answered crystal clear. I believe there is a bit of shock happenning right now to both.
Hopefully, my friends will reach out to you directly - and join the forum they certainly need someone like you (and others on the forum) for guidance. Unfortunately, she has eye problems and he is unconsoloble.
Thank you all (Hondapatches) didn't mean to ovelook you post - thank you.
I will also be posting soon regarding my condition - but will focus on this at the moment.
Have a wonderful day to ALL!
millie
She said the pain is constant never ending. She said the other day he walked out of the house at 3:00 AM in the morning with unknown intentions from the pain. Oh, and YES - we are New Yorkers! The doctor is Dr. Samuel H. Sigal (my doctor too) who is Co-Director of Transplant Hepatology Department of Surgery at NYU. The doctor is going to do a colonoscopy as well. And, Yes he is on permanent disability and is also Veteran. He believes he got his hep C in Germany when he was in the Army from a tatoo. Just and FYI as we all know in the end it does not matter how we got it - we got it - period.
I begged her to go on the forum and to email you directly as questions will come up that I'm in no position to answer. Even after I read the entire post she still was unclear and wanted to focus on the correlation between cirrhosis and the pain which I believe you answered crystal clear. I believe there is a bit of shock happenning right now to both.
Hopefully, my friends will reach out to you directly - and join the forum they certainly need someone like you (and others on the forum) for guidance. Unfortunately, she has eye problems and he is unconsoloble.
Thank you all (Hondapatches) didn't mean to ovelook you post - thank you.
I will also be posting soon regarding my condition - but will focus on this at the moment.
Have a wonderful day to ALL!
millie
One other thing...
Make sure that if he wants our help he MUST get copies of all of his medical reports so he can post the exact data online. Generalities or incorrectly remember words from the doctor really are not helpful at all.
I assume they will be transferring him to a transplant center soon. He will just need to go to the medical records room and sign a HIPPA form to get copies of all of his records. He should get any blood results, imaging studies (ultrasound, CT scan or MRI) and then when he has the cancer treatment the reports of the procedure.
BTW: Liver cancer is diagnosed using imaging studies in combination with the AFP blood test. He will have a special type of CT scan or MRI to view the tumors so these reports are critical to understand the nature and extent of the cancer.
Hector
Make sure that if he wants our help he MUST get copies of all of his medical reports so he can post the exact data online. Generalities or incorrectly remember words from the doctor really are not helpful at all.
I assume they will be transferring him to a transplant center soon. He will just need to go to the medical records room and sign a HIPPA form to get copies of all of his records. He should get any blood results, imaging studies (ultrasound, CT scan or MRI) and then when he has the cancer treatment the reports of the procedure.
BTW: Liver cancer is diagnosed using imaging studies in combination with the AFP blood test. He will have a special type of CT scan or MRI to view the tumors so these reports are critical to understand the nature and extent of the cancer.
Hector
Hi Millie.
"Is it the cirrhosis that is causing the pain?" You would have to describe the pain. Where, is it sharp, dull, constant, intermittent, etc. The doctor will figure it out.
Unfortunately his hep C or even the pain unless it is related to his cancer should not be the focus of his concern. Based on what you have posted, it appears that J. has liver cancer. Otherwise know as HCC or Hepatocellular carcinoma.
"diagnosed with cancer. His doctor immediately called him in the office and wanted to start him on chemo. They said its "very mild" or very small. The doctor also suggested to him that they want to put him on the transplant list "just in case"."
All patients that develop cirrhosis have an increased risk of liver cancer. Being a cirrhotic he should have been screened every 6 months to check for liver cancer and his AFP levels should have been monitored as well.
Liver cancer is a fatal and an aggressive cancer. That is why the doctor made it seem so urgent. It is. Now the doctor said the tumor or tumors are small. I very much hope this is the case. Usually when someone feels pain from liver cancer it has already spread to other parts of the body (metastatic cancer). But the doctor doesn't think that has happened which is a very good thing.
J will need further testing to determine the exact status of his liver cancer and then will have treatment that can either reduce the size of the tumor(s) of eliminate them. Treatment (of with chemo is one option) is designed to keep the cancer under control until a patient can get a transplant. Transplant is the only cure for liver cancer I am sorry to say. So he will need a transplant soon. Depending on where he lives will determine how long he will have to wait. If he lives in New York the wait time is very long. But this is something his doctor will explain to him. Living with liver cancer has a huge learning curve in in time he will come to understand it with his hepatologists and other people at the transplant center helping him.
I am in the same boat. I have liver cancer and have had two chemo treatments to keep my tumors from growing larger or from spreading.
I am not sure how much you want to know and how he and his wife will handle this information. I would let the doctor educate him about his situation. If you are they want more information I will be happy to provide it but you must realize this is very difficult for anyone to hear. So as I said I would leave it to his doctor to manager most of it.
For your friend J. this will be a life changing event. There are too many aspects to having liver cancer that I can't cover now. He needs to go step by step through the process.
**** Two very important things he should be doing ****
* If he is on SSDI for Chronic Liver Disease he should remain on disability as a liver cancer and transplant diagnosis will continue to qualify him for permanent disability.
* Also he needs to keep any health insurance he has. Cancer treatments and testing are very expensive. My chemo treatments were $64,000 each and each MRI I have is $5,000. Even my blood tests can be $2,000. A transplant is hundreds of thousands of dollars and post treatment drugs are many thousands per month.
Feel free to PM me anytime and I will be happy to help J. in anyway I can.
Best of luck to your friend and his wife.
I am very sorry for both of them. But if the cancer was caught early there is a good chance he can survive this like I am intending to do.
Hectorsf
"Is it the cirrhosis that is causing the pain?" You would have to describe the pain. Where, is it sharp, dull, constant, intermittent, etc. The doctor will figure it out.
Unfortunately his hep C or even the pain unless it is related to his cancer should not be the focus of his concern. Based on what you have posted, it appears that J. has liver cancer. Otherwise know as HCC or Hepatocellular carcinoma.
"diagnosed with cancer. His doctor immediately called him in the office and wanted to start him on chemo. They said its "very mild" or very small. The doctor also suggested to him that they want to put him on the transplant list "just in case"."
All patients that develop cirrhosis have an increased risk of liver cancer. Being a cirrhotic he should have been screened every 6 months to check for liver cancer and his AFP levels should have been monitored as well.
Liver cancer is a fatal and an aggressive cancer. That is why the doctor made it seem so urgent. It is. Now the doctor said the tumor or tumors are small. I very much hope this is the case. Usually when someone feels pain from liver cancer it has already spread to other parts of the body (metastatic cancer). But the doctor doesn't think that has happened which is a very good thing.
J will need further testing to determine the exact status of his liver cancer and then will have treatment that can either reduce the size of the tumor(s) of eliminate them. Treatment (of with chemo is one option) is designed to keep the cancer under control until a patient can get a transplant. Transplant is the only cure for liver cancer I am sorry to say. So he will need a transplant soon. Depending on where he lives will determine how long he will have to wait. If he lives in New York the wait time is very long. But this is something his doctor will explain to him. Living with liver cancer has a huge learning curve in in time he will come to understand it with his hepatologists and other people at the transplant center helping him.
I am in the same boat. I have liver cancer and have had two chemo treatments to keep my tumors from growing larger or from spreading.
I am not sure how much you want to know and how he and his wife will handle this information. I would let the doctor educate him about his situation. If you are they want more information I will be happy to provide it but you must realize this is very difficult for anyone to hear. So as I said I would leave it to his doctor to manager most of it.
For your friend J. this will be a life changing event. There are too many aspects to having liver cancer that I can't cover now. He needs to go step by step through the process.
**** Two very important things he should be doing ****
* If he is on SSDI for Chronic Liver Disease he should remain on disability as a liver cancer and transplant diagnosis will continue to qualify him for permanent disability.
* Also he needs to keep any health insurance he has. Cancer treatments and testing are very expensive. My chemo treatments were $64,000 each and each MRI I have is $5,000. Even my blood tests can be $2,000. A transplant is hundreds of thousands of dollars and post treatment drugs are many thousands per month.
Feel free to PM me anytime and I will be happy to help J. in anyway I can.
Best of luck to your friend and his wife.
I am very sorry for both of them. But if the cancer was caught early there is a good chance he can survive this like I am intending to do.
Hectorsf
Yes, I gave a simplified version, but Hector will hopefully show up, to give you a very accurate medical version.
One more thing, I forgot to answer your question~ If your friend had hep C and cirrhosis, before his treatment, and he cleared his Hep C virus, then he will no longer have Hep C (although he will always react positive to an antibody test, but when given a more accurate and complicated test, like a quantitative or qualitative HCV test, will then test "undetected" because he wont have a viral load)..but he will still have cirrhosis.
Lots of people get that part confused, but yes, he still has cirrhosis
One more thing, I forgot to answer your question~ If your friend had hep C and cirrhosis, before his treatment, and he cleared his Hep C virus, then he will no longer have Hep C (although he will always react positive to an antibody test, but when given a more accurate and complicated test, like a quantitative or qualitative HCV test, will then test "undetected" because he wont have a viral load)..but he will still have cirrhosis.
Lots of people get that part confused, but yes, he still has cirrhosis
Boceprevirgal: Yes. His cancer is in his liver. Great information. As soon as they call I will relay this information.
Idyllic: He did have a biopsy before the trial. Thanks for the link very helpful.
Perhaps, Hector and the other wise men/women will chime in later....
I will stay tuned.
millie
Idyllic: He did have a biopsy before the trial. Thanks for the link very helpful.
Perhaps, Hector and the other wise men/women will chime in later....
I will stay tuned.
millie
Oy. I would think something is a little more serious with my health if my doctor suggested I put my name on a transplant list "just in case."
Your friend could have cirrhosis (or some other liver disorder) if he never had a biopsy and still have responded to HCV meds and cleared the virus. I have to defer to others who have cirrhosis to respond to the rest of your post though.
The med he treated with:
http://www.medicalnewstoday.com/articles/237368.php
Your friend could have cirrhosis (or some other liver disorder) if he never had a biopsy and still have responded to HCV meds and cleared the virus. I have to defer to others who have cirrhosis to respond to the rest of your post though.
The med he treated with:
http://www.medicalnewstoday.com/articles/237368.php
Is his cancer in his liver?
It is very good news, that he cleared his Hep C virus, because now, if he does have to get a transplant (worst case scenario, of course), then his new liver wont catch the Hep C, which is what happens, if a person still has Hep C, and they have to have a transplant.
Some people have experienced GIRD (GERD?) gatro-intetinal reflux disorder, as a side effect, from these meds, so I would think an ulcer would also be possible, since my med tastes so bitter.
I havent heard of cirrhosis having the sympptom of severe stomach and back pain, the main symptoms of cirrhosis are fluid (that isn't being processed by the scarred liver) escaping into other parts of the body, causing ascites (fluid in the belly..which can become infected, which may cause pain, but I think would cause fever also, maybe? I'm no expert) and edema (fluid in the legs, mainly lower legs)
Another very dangerous symptom is "bleeding out" from veins, that become pressured, and then burst (again, due to the cirrhotic liver).
This bleeding can come from the esophegus, where a person coughs up chunks of blood ( this is called verices), or the bleeding can occur in other veins.
Good luck to your friend, in eradicating his cancer quickly, I have heard that chemo is very hard to get thru, so I am glad he has a supportive friend, to help him thru
It is very good news, that he cleared his Hep C virus, because now, if he does have to get a transplant (worst case scenario, of course), then his new liver wont catch the Hep C, which is what happens, if a person still has Hep C, and they have to have a transplant.
Some people have experienced GIRD (GERD?) gatro-intetinal reflux disorder, as a side effect, from these meds, so I would think an ulcer would also be possible, since my med tastes so bitter.
I havent heard of cirrhosis having the sympptom of severe stomach and back pain, the main symptoms of cirrhosis are fluid (that isn't being processed by the scarred liver) escaping into other parts of the body, causing ascites (fluid in the belly..which can become infected, which may cause pain, but I think would cause fever also, maybe? I'm no expert) and edema (fluid in the legs, mainly lower legs)
Another very dangerous symptom is "bleeding out" from veins, that become pressured, and then burst (again, due to the cirrhotic liver).
This bleeding can come from the esophegus, where a person coughs up chunks of blood ( this is called verices), or the bleeding can occur in other veins.
Good luck to your friend, in eradicating his cancer quickly, I have heard that chemo is very hard to get thru, so I am glad he has a supportive friend, to help him thru
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