Aa
help me decide please scared!!!!!!!!!!!
I am geno type 1. My biopsy said stage three. I have been reading posts from people who have long lasting side effects the drs. won't admit comes from treatment. I also have lupus which is under control now and cryoglobunimia a form of vasculitis associated with hep c virus.I am scared to death about this. What if I wait the two to three years for the new drug and treat my liver with natural supplements? I know it wont do anything for the virus but will it keep my liver healthy enough until the new treatment comes? Right now I have fairly good health. I have weened off the prednisone and have not had any swollen joints and have not had the days where I couldn't hardly walk.I am on the plaqunel for the lupus.Some say timing is everything. Right now is a very stressful time for me. The relationship I am in is emotionally abusive and there has been no intimacy in a long time. I know you are asking yourselves why are you still there? Good question. I have tried to leave and have several times and always end up back here. The emotional abuse is very difficult to explain but it hurts a person far worse than physical it gets at your soul your self worth.If anyone has anything they can tell me about post tx or similar situations regarding geno types anything at all i would really appreciate it. Praying for all of us Ivy
Best Answer
my recommendation would be to take one step at a time. getting your personal life in order so u can get ready for treatment would be the first step. that means stepping away from anyone who cannot wholeheartedly be supportive. as others said treatment is not ez. but does not mean you will get all the worst sx you read about anymore than u will get all the sx your read about on your tylenol bottle by taking a few. if you are well prepared by educating yourself u can often head off sx before they happen like getting on AD before treatment. use your time well as it is surely ticking but weeks or even a few months probably wont make a difference. sounds like u have made a good start by reaching out here. best, babs
I'm not sure why you have asked this question on 3 separate threads sweetie.
The only thing I can think of, it you are understandably scared right now, and it's spinning you out.
Everyone in here has had to wrestle with the same type decisions however, and as someone pointed out, at the end of the day each person must decide for themselves.
It helps to have our support, it helps to have doctors guiding and informing, but at the end of the day, it's gotta be your call.
I will say that if you read a lot of the sides in here you can get very scared BUT remember this, this forum is where folks who do have sides come to complain...folks not having many sides often just keep plugging away...they don't show up with 50 questions...folks that are sicker for whatever reason, will describe in detail what's happening. That means you are not getting a cross section of what happens, but rather you are seeing and reading the worst case scenarios...and you can not extrapolate that every person therefore suffers to those degrees.
Having said that, you may have greater difficulty with autoimmune diseases. I have some AI stuff...and it did make tx harder....
the bigger issue however is that tx takes an emotional toll...and you need support.
rememeber what I said the last time:
an abusive relationship alone can be responsible for all manner of ailments, especially those involving brain chemistry and immune response. Abuse, be it emotional or physical will stress out the entire system and as the body becomes awash in abnormal amounts of various hormone and stress chemicals the system becomes suseptible to many more auto immune ailments.
Certainly that's not the only thing that causes things like Lupus, but the more we learn about why the body begins attacking itself, the more it appears that the constant stress is a giant factor. No one knows for certain of course what the final trigger for cancer, lupus or a whole host of other things are, but part of these perfect storms is often just the body's inability to keep up with the daily tasks especially when rest and peace are seldom available. So my advice is before you consider chemo for you hep C, try some natural helpers, (PM me if you want some suggestions here) and get rid of the loser.
Life is to short to spend it with an jerk, and while is scary to go through these things alone, it's worse to contemplate doing it with someone unkind, unloving and non-supporting. Whatever your final outcome, we all need to find peace in our lives.
first, I would resolve your issue with your mate, either through counseling or separation.
the way tx effects most people is that the emotional component causes a far greater drop out rate than the sides (30% drop out due to this).
ergo a supportive spouse is a plus, but a jerk will almost guarantee failure.
you are apt to be very fragile while on tx.
another thing, if you start by working on your living situation you may end up in a plus situation. There are about 15 new drug combos in trial right now that do not include Interferon. They are working hard on an alternative to INF being included in the tx regime because so many folks could not tolerate it. So while you get your life in order it could be a tx that you could succeed with more easily may emerge.
I will tell you what my doctor said when I was stage 3/4...."you could go another 15 years with no tx." Now obviously we haven't seen your labs or your biopsy report, so no one can really tell you you have 10 or 20 years or whatever...but it's a pretty good bet that if you took the year to resolve and end what needs ending you would be in a better position both physically and emotionally to deal with treatment. Succeeding in tx means you could live to a ripe old age so the goal should be to succeed, be determined to succeed...it's crucial to your tx, to not skipping doses etc. that you be determined.
I've often wondered what would I have done without my hubby to shlep groceries during my terrible 2 years of anemia...and the truth is, I would have order groceries once a month, and paid the 10 dollars for the delivery!! It would be a small price to have paid.
Listen, if you are with someone unsupportive NOW, the chance they will even stick around... is a bad bet, and the chance they will be demanding, or sabotaging, that's a good bet, right??
Well, only you know what you mean by abusive, but we've seen a lot of relationships end in here, and it's not easy when in happens in the middle of chemo. As bad as it is under normal circumstances, it's far worse to be abandoned midstream.
I had a very selfish spouse when I first got ovarian cancer 18 years ago. I had to decide...do I go through the surgery and chemo with him or without him. Everything in this mans life was about him, it was all about him...he was a liar and a user of people...the world had to center on him...and he was incapable of true tenderness after the honeymmon phase.
(plus I found out after I married him that he had attempted to murder his first wife). Yeah.
I asked myself this question...if things don't work out...if the treatment doesn't work on me...do I want to die in this man's arms???
My answer was a resounding NO, I don't want that.
So I moved on.
My prayer is that you'll have the strength to do what you need to do and find peace.
We all need that.
mb
The only thing I can think of, it you are understandably scared right now, and it's spinning you out.
Everyone in here has had to wrestle with the same type decisions however, and as someone pointed out, at the end of the day each person must decide for themselves.
It helps to have our support, it helps to have doctors guiding and informing, but at the end of the day, it's gotta be your call.
I will say that if you read a lot of the sides in here you can get very scared BUT remember this, this forum is where folks who do have sides come to complain...folks not having many sides often just keep plugging away...they don't show up with 50 questions...folks that are sicker for whatever reason, will describe in detail what's happening. That means you are not getting a cross section of what happens, but rather you are seeing and reading the worst case scenarios...and you can not extrapolate that every person therefore suffers to those degrees.
Having said that, you may have greater difficulty with autoimmune diseases. I have some AI stuff...and it did make tx harder....
the bigger issue however is that tx takes an emotional toll...and you need support.
rememeber what I said the last time:
an abusive relationship alone can be responsible for all manner of ailments, especially those involving brain chemistry and immune response. Abuse, be it emotional or physical will stress out the entire system and as the body becomes awash in abnormal amounts of various hormone and stress chemicals the system becomes suseptible to many more auto immune ailments.
Certainly that's not the only thing that causes things like Lupus, but the more we learn about why the body begins attacking itself, the more it appears that the constant stress is a giant factor. No one knows for certain of course what the final trigger for cancer, lupus or a whole host of other things are, but part of these perfect storms is often just the body's inability to keep up with the daily tasks especially when rest and peace are seldom available. So my advice is before you consider chemo for you hep C, try some natural helpers, (PM me if you want some suggestions here) and get rid of the loser.
Life is to short to spend it with an jerk, and while is scary to go through these things alone, it's worse to contemplate doing it with someone unkind, unloving and non-supporting. Whatever your final outcome, we all need to find peace in our lives.
first, I would resolve your issue with your mate, either through counseling or separation.
the way tx effects most people is that the emotional component causes a far greater drop out rate than the sides (30% drop out due to this).
ergo a supportive spouse is a plus, but a jerk will almost guarantee failure.
you are apt to be very fragile while on tx.
another thing, if you start by working on your living situation you may end up in a plus situation. There are about 15 new drug combos in trial right now that do not include Interferon. They are working hard on an alternative to INF being included in the tx regime because so many folks could not tolerate it. So while you get your life in order it could be a tx that you could succeed with more easily may emerge.
I will tell you what my doctor said when I was stage 3/4...."you could go another 15 years with no tx." Now obviously we haven't seen your labs or your biopsy report, so no one can really tell you you have 10 or 20 years or whatever...but it's a pretty good bet that if you took the year to resolve and end what needs ending you would be in a better position both physically and emotionally to deal with treatment. Succeeding in tx means you could live to a ripe old age so the goal should be to succeed, be determined to succeed...it's crucial to your tx, to not skipping doses etc. that you be determined.
I've often wondered what would I have done without my hubby to shlep groceries during my terrible 2 years of anemia...and the truth is, I would have order groceries once a month, and paid the 10 dollars for the delivery!! It would be a small price to have paid.
Listen, if you are with someone unsupportive NOW, the chance they will even stick around... is a bad bet, and the chance they will be demanding, or sabotaging, that's a good bet, right??
Well, only you know what you mean by abusive, but we've seen a lot of relationships end in here, and it's not easy when in happens in the middle of chemo. As bad as it is under normal circumstances, it's far worse to be abandoned midstream.
I had a very selfish spouse when I first got ovarian cancer 18 years ago. I had to decide...do I go through the surgery and chemo with him or without him. Everything in this mans life was about him, it was all about him...he was a liar and a user of people...the world had to center on him...and he was incapable of true tenderness after the honeymmon phase.
(plus I found out after I married him that he had attempted to murder his first wife). Yeah.
I asked myself this question...if things don't work out...if the treatment doesn't work on me...do I want to die in this man's arms???
My answer was a resounding NO, I don't want that.
So I moved on.
My prayer is that you'll have the strength to do what you need to do and find peace.
We all need that.
mb
Thank you. I have to tell you that when I first found out putting myself in a calm, supportive environment was my full intention. Same school of thought as you. No toxic people as they are hard on mind ,body and soul. I am taking steps now to realize this dream. And more than that it should not be a dream, but a right. Bless you for your kind, thoughtful words.I would surely do the biopsy and wait if I could.I hear they are coming up for clinical trials as soon as 2011 in the US. I am going to my sisters place. Thank goodness for big sisters. We have a few issues, but we have love and that is what I believe will heal me.I hope your biopsy turns out to be in the early stages. Bless you Ivy
I just joined this community today and am struggling w/the same decision-tx now or wait and hope for better, less toxic options? I don't even have the results from my biopsy yet so I'm really still in the info gathering process. If and when I decide to have tx. I plan to do everything in my power to suround myself in a calm, supportive environment. I may have to put "toxic" chemicals into my body but I can try to protect my spirit from "toxic" people.
I was the Director of a battered women's program/shelter for many years and I know from personal and professional experience that emotional abuse can be as damaging to the soul as physical abuse is to the body (it also causes a lot of physical manifestations). If there is a good, supportive battered person's program in your area, you may want to give them a call. Check on support groups. Yes, its hard to remove yourself from these situations. After all, love and hope go hand-in-hand. Its hard to let go of hope, even when its not always realistic. Unfortunately, abusers seldom change. Its very hard for me to work up the strength to battle this disease, I can't image having to battle abuse as well. Just remember, most people who live in abusive situations are really very courageous and strong, they just don't always realize it. Keep reaching out, marshall that courage and take care of you.
I was the Director of a battered women's program/shelter for many years and I know from personal and professional experience that emotional abuse can be as damaging to the soul as physical abuse is to the body (it also causes a lot of physical manifestations). If there is a good, supportive battered person's program in your area, you may want to give them a call. Check on support groups. Yes, its hard to remove yourself from these situations. After all, love and hope go hand-in-hand. Its hard to let go of hope, even when its not always realistic. Unfortunately, abusers seldom change. Its very hard for me to work up the strength to battle this disease, I can't image having to battle abuse as well. Just remember, most people who live in abusive situations are really very courageous and strong, they just don't always realize it. Keep reaching out, marshall that courage and take care of you.
Thanks for all your support. Its hard to choose a best answer like they want you too. They were all good. Thank you again
You have to make your own decision about all this. End stage liver disease isn't a pretty picture either but you must keep in mind antiviral therapy can be physically, mentally and emotionally challenging and you have to be ready to deal with all those things. You also have some other health problems which can present a problem when undergoing therapy as well. Lots of consider but you are a stage 3 like me and we don't have a lot of time to wait around. Honestly, if it were me I would seriously consider waiting for the PI's and if it looks like they won't be released by next year I'd would treat with the current standard of care no later than the fall of 2011.
Trinity
Trinity
I read that post. Try to remember that the majority of people who reach SVR don't come back to this site because they are going on to live the rest of their life. You are seeing a very small percentage of people who are having such trouble after tx.
Diane
Diane
Thanks for your response. I suppose only my doc could tell me for sure but I suspect you might be right have you read some of the post tx symptoms? One women said she lost control of her bladder and bowel. Thank you and my prayers will include you Ivy
You are at stage 3... I'm pretty sure that stage 4 is cirrhosis. I don't think it would be wise to wait 2 to 3 years. That's my personal opinion anyhow.
I completely understand the damage that an emotionally abusive relationship can do to you. I think it will make tx harder on you and I'd really try to get out of that relationship first.
I'm in the middle of tx so I can't tell you about how long sx last, but I'd prefer living with the sx I have now to cirrhosis or liver failure.
Diane
I completely understand the damage that an emotionally abusive relationship can do to you. I think it will make tx harder on you and I'd really try to get out of that relationship first.
I'm in the middle of tx so I can't tell you about how long sx last, but I'd prefer living with the sx I have now to cirrhosis or liver failure.
Diane
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