side effects of PEGASYS and COPEGUS

[Formymother]

I am new here. I am not the one that waas diagnosed or is taking PEGASYS and COPEGUS. My mother is and it has me wrecked. I live in Tacoma WA. and she lives in Spokane WA. My sister has been given authorization to be her care taker by the state. The problem I am really having with all of this is My grandfather passed away Before she was put on her meds and it hit her hard.
I asked her what the meds are doing for her and if it had side effects. She said yes she has lost alot of weight but had swelled up like she was pregnant. I know about the liver having serious problems and it causing the central stomach area of a person to swell. My big fear is that her liver is farther along then she or my sister lets on. I have a friend here in Tacoma and he has liver problems and is now bedridden and swelled up central body like he was 9 months pregnant.Does this medication actually cause the swelling like that or is this the time i need to move closer to Spokane and be near my mother?
a nurse here in Tacoma I talked to said she is not familiar with PEGASYS and COPEGUS but she said that i am probably looking at advanced liver disease or a failing liver.
I have been roaming around the internet so long looking for a place that has support info by people actually on these products and not the people seeling or administering them.
I am so happy I found you.

Ron

[jonihs]

I had liver failure in july 02. MY stomach did the same thing. It was filled w/ ascites, toxins my liver couldn't handle.They used a small Catheter, and drained 3 1/2 litres out. 2 days later, they another drained 2 1/2 litres. they gave mega meds and kept me  alive until I finished alcohol tx.  Now, through meds. proper diet an NO ALCOHOL, I started Peg/ Copeg 5 weeks ago.I didn't even have a clue about the Hep until ALC tx.   Already I am healthier than I've been in 5 years.I'm 5'2" and weighed 105 lb.s when I started to get sick. All I'm saying is don't give up until they give you no choice, and If she has to go, MAKE DAMN SURE THEY KEEP HER PAIN FREE!!!!! God Bless You and your family.   Joni

[WillieB]

My mother died of liver cancer four years ago.  She did have a living will and used hospice for the last month.  I look back on those days with her and have beautiful memories. Even at the time I felt a peace and an understanding that comes with death.  My mother's cancer was to far along when she was diagnosed.  Our efforts as a result were all in allowing her to die in her home with loved ones around her.  It is interesting that you mentioned the increase in girth.  Mom started using a measuring tape to monitor the swelling in the abdominal area.  She knew she was going to die.  She even made her own funeral arrangements and had everything paid for in advance.  Hospice was wonderful and a great gift to families all across the country.  When mom died I was laying in bed with her.  I felt an overwhelming need to get in bed with her.  Little did I know that her last breath would be while I was holding her.  Our mothers do so much for us.  The least we can do is to provide a dignified death.

     The mother of a friend of mine died of liver cancer last year.  She shared with me that her drug addicted brother (45 years old) was taking the liquid morphine that hospice provides for the dying patient.  There has to be a hell.

[oldhippiechick67]

Wow, what a wonderful son you are!  To care that much to keep researching!  Good for you!!  the other site I like is
janis7hepc.com   lots of good info and links.  Yes, get the Medical Power of Attorny signed!  We have found thru our family crisis' that it is important to have your "do not resusitate"  (living will) filled out and notarized/witnessed.  You never know when someones time comes, and it is hard on family to have to say what the person wants.  Like my husbands bro-in-law, he was taken suddenly by a brain hemorrhage at a young age of 41, no one would ever think he would die at that age!  He was fit and healthy (we thought).  And since he hadnt discussed his wishes for how he wanted his final days to be...well, anyways, he was put on life support while the wife had 3 opinions given that he was brain dead, and finally after 3-4 days his heart gave out and he passed on. She just couldnt tell them to turn off the life support.  Luckily God took care of that.
His other bro-in-law died two+ years ago in a boating accident... only 36.  His brother has a terminal brain tumor, diagnosed at 29yr old.  I think this family has a kennedy curse!  kidding, but it is rather creepy.
It is also important to be an organ donor, even us with hep C, they can still transplant our organs to someone who is also a Hep C carrier, and then get tx after the transplant.  Anyways thats my feelings.  Enuf of the grim talk.

[Formymother]

Wow what a quick response.
She must be doing the "protect her kids" thing then. I'm 34 and need to know the truth. Not a fabrication of the truth for protection. I will visit every link posted here and read all information. I am planning on going to support meetings if I can find one here in Tacoma area. I'm also going to try and get the real information from her doctor. If they won't give me the info I nedd then I will ask my mom to sign medical information release forms so I can speak to her doctor. I want to thank you for accepting me in and responding to my posting. This is a group that more should know about.
I will keep you posted on what I find out. I know people hate open endings.

Ron

[OkieJim]

I would love to add more but I think that most of what has been needed to say has been done. So sorry for your situation. You do need to ask some very hard questions now. There are some on this board that are surviving ESLD (End Stage Liver Disease) and treatment. The fact that your mom is on TX has some encouragement. The Dr. would not prescribe these meds if there were no chance at all I don't believe. I should say I want to belive. Best of luck to you Ron. I hope you can get the answers you are looking for.

[LvdByGod]

hi you are so welcome here. my mom died of liver failure/ESLD  and liver cancer. we didn't even know she was sick till it was too late. get your mom on a transplant list. as soon as possible. it was too late for my mom, having already had cancer they thought. she refused the biopsy.  The whole thing was never explained to me adequately and i didn't know enough to interviene correctly. so educate yourself fast. go on web and look up end stage liver disease, liver transplants...mabey you could donate part of your liver to her or someone else in the family with a compatable blood type and liver,etc... And most importantly get into your moms life. sometimes we need to care for them even if they don't want to bother us, or us them. please read all you can on the disease and process and talk to her dr.s and insist all is being done that can be done. talk turkey with your mom, the time of the "hidden" disease must end. and do insist your mom sign a form indicating what she wants in the end to happen. as none of us will live forever. it was really hard on me because my mom had mental illness also and refused to signify her last wishes as far as a liveing will. i and my brother had to decide when and if to stop medicines, food, oxegen, ... it was horrible. i felt so responsible for her death, but, she would have died anyway and if she would have signed a liveing will and gotton on hospice she could have gone with far less pain. they researve the heavy pain meds. for those on a living will. and they also don't do any unnessesary "heroic efforts" (that sometimes hurt like hell). pardon the bad language. just to buy a couple more days of misery. this is what i went through. and it was not the best way to go. i pray much better for you and your mom. find out what stage her hepatitus is in. for this a biopsy is needed. if she is far enough along she could possibly be a candidate for a liver transplant. research this too. i pray the best for you and your mom. perhaps the lord had you find this out at the best possible time for her and you. God bless you and keep you in his care through this. love sandi

[Galen]

I don't have any advice other that was already given, but I did find a support group in Tacoma.  
Tacoma -  4th Wed/mo, 7pm, Rm 2, 1st Fl, Group Health Specialty CU, 209 Martin Luther King Jr. Way, (at Division). Greg Rathbun @253-549-2234 or Rosie Garcia  @ 253-984-1889

Hope these folks can help.

[GreatBird]

What you are describing are side effects of liver disease, but not side effects of pegasys and copegus. Ascites indicates a very cirrotic liver.

I agree that you need more information. Can you talk to her doctor?

[BobK]

Yes it sounds like your mothers liver disease may be more advanced than you have been told.  Ascites is an accumulation of fluid in the abdominal cavity (pregnant-like) and is a symptom of ESLD (end stage liver disease).  There are a number of infr sites out there and many have been posted in recent threads.  Here is a couple:
http://www.projectsinknowledge.com
http://www.hcvadvocate.org

others will suppply you with their personal favorites!

I would try and find out what your mothers diagnosis actually is.  Has she had a biopsy, genotype, viral load, blood work (ALT, AST, GGT, ect).  

regards,
BobK