Best of luck Tim. Glad you're feeling better. I do hope that there are no serious problems with your heart and that in the instance you don't achieve svr you have the opportunity to 'nail' this thing with the new meds.

Onward, it's all we can do

KristyX

See. This is just what I've been claiming all along. It turns us into Pirates. First it's an eye patch and soon it's a parrot on your shoulder.

Having eye problems and having to end Rx may seem like a huge set-back.  I feel your pain; those of us going down this road know the commitment and single mindedness that it takes to stay on RX. Being forced off is bummer. All I wish for you is that when the time comes, you'll find the strength to start again.

Today is so much better than the last couple days, having two really good nights sleep(10 hr.s uninterrupted last night!) is priceless! 

I think I'm pretty much back on an even keel now,which is just in time, because now my GP wants to see me about my heart.

Wow - sorry to hear that.  

LanaiSurferGirl wrote:

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Hey Tim!  From what I have read in reasearch it is the interferon that is the culprit of eye problems and they usually clear up once you stop the medication.  You had a good run at 17 weeks and who knows, maybe you will still have SVR after this...it is a new treatment so you never know :)  Stay positive and if you don't achieve SVR your doc is right in that those all oral treatments should be available in the next few years as long as the trials continue to go well.  Keep cool and hydrated up there in Victorville...San Diego is HOT right now so can't imagine what you are feeling up there! :)

aloha,

Meghan

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I am cautiously hopeful about the possibility of 17 SVR; that would truly be a godsend...will be anxious to see the next VL lab result.

It'll be another triple digit day for sure.  I am comitted to continuing with a high level of hydration, my two 64 oz. water bottles are a permanent part of my life.  

Judy S wrote:

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I'm so sorry Tim; I am imagining how you must be feeling.  I was 100% certain I was done with tx while in the hospital again last Sat; what emotional turmoil! My hope is that you will achieve SVR anyway, with the amount of time you've done.  It is possible!  Interferon affects my eyes in many ways; none good.  My last Ophthalmology exam showed my eyesight has worsened; I had to get new glasses.  You are in my prayers; please keep us posted. 

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Thanks so much for the thoughts and prayers, I will try to be positive, and focus on "what can be" rather than "what could have been"...

Yesterday was a real bad day for me, went to urgent care and was given a script for Xanex("acute anxiety-extreme stress" ) it is helping but I still get some painful moments.

Edited- merged posts.

I'm so sorry Tim; I am imagining how you must be feeling.  I was 100% certain I was done with tx while in the hospital again last Sat; what emotional turmoil! My hope is that you will achieve SVR anyway, with the amount of time you've done.  It is possible!  Interferon affects my eyes in many ways; none good.  My last Ophthalmology exam showed my eyesight has worsened; I had to get new glasses.  You are in my prayers; please keep us posted. 

Hey Tim!  From what I have read in reasearch it is the interferon that is the culprit of eye problems and they usually clear up once you stop the medication.  You had a good run at 17 weeks and who knows, maybe you will still have SVR after this...it is a new treatment so you never know :)  Stay positive and if you don't achieve SVR your doc is right in that those all oral treatments should be available in the next few years as long as the trials continue to go well.  Keep cool and hydrated up there in Victorville...San Diego is HOT right now so can't imagine what you are feeling up there! :)

aloha,

Meghan

jrc wrote:

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I had allot of vision issues myself while on tx, but never said anything to my dr cuz i knew it would prob stop my tx. That probably wasnt smart on my part  but luckily my vision is back to normal again! after 17 weeks there is still hope for svr!

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 Wow, pretty gutsy gamble- so glad that it paid off for you!    I debated whether or not to say anything about the vision thing, I wasn't even sure how to describe it or if it was just my imagination, or something like "dry eye".

I am afriad to get my hopes up about anything right now(pretty beat-up emotionally) but I shall quietly hope and pray for SVR @17 weeks...

I had allot of vision issues myself while on tx, but never said anything to my dr cuz i knew it would prob stop my tx. That probably wasnt smart on my part  but luckily my vision is back to normal again! after 17 weeks there is still hope for svr!

jrc wrote:

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hrsetrdr wrote:

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peanutbutter wrote:

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davesf wrote:

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Stay optimistic Tim.  Yes, your odds may lower, but they are definitely way over zero in terms of staying UND if you've made it this far.

Best,  Dave

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 I agree. I know it's hard but try to stay positive you. One of my favorite quotes is "you never know". Praying good things come your way.

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Thanks Mike, I meant to come back and comment on Dave's post;  I did mention to my Gastro doc when he called to give his condolences- he agreed that there was a posssiblilty but we didn't come up with any betting odds.

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 sorry for your news ! were u on the 28 week plan? There is stilll hope

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 Yes, tonight I would have taken shot #17 of 28, and would have had less than 3 months to go.

It's very hard for me to look around at my "on treatment" stuff, and realize that none of it is any longer important.   My water bottles, the pill containers, even my "dart chart" no longer are relevent.   I feel displaced(even worse) and like I'm outside of my life, drifting with no purpose, no hopes, no joy.    I'll expand on all this in a new thread here, in a little bit.

hrsetrdr wrote:

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peanutbutter wrote:

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davesf wrote:

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Stay optimistic Tim.  Yes, your odds may lower, but they are definitely way over zero in terms of staying UND if you've made it this far.

Best,  Dave

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 I agree. I know it's hard but try to stay positive you. One of my favorite quotes is "you never know". Praying good things come your way.

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Thanks Mike, I meant to come back and comment on Dave's post;  I did mention to my Gastro doc when he called to give his condolences- he agreed that there was a posssiblilty but we didn't come up with any betting odds.

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 sorry for your news ! were u on the 28 week plan? There is stilll hope

peanutbutter wrote:

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davesf wrote:

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Stay optimistic Tim.  Yes, your odds may lower, but they are definitely way over zero in terms of staying UND if you've made it this far.

Best,  Dave

---

 I agree. I know it's hard but try to stay positive you. One of my favorite quotes is "you never know". Praying good things come your way.

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Thanks Mike, I meant to come back and comment on Dave's post;  I did mention to my Gastro doc when he called to give his condolences- he agreed that there was a posssiblilty but we didn't come up with any betting odds.

davesf wrote:

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Stay optimistic Tim.  Yes, your odds may lower, but they are definitely way over zero in terms of staying UND if you've made it this far.

Best,  Dave

---

 I agree. I know it's hard but try to stay positive you. One of my favorite quotes is "you never know". Praying good things come your way.

Karen wrote:

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Sent to me by a friend today-thought a good time to share.  

"Wisdom ceases to be wisdom when it becomes too proud to weep, too grave to laugh, and too selfish to seek other than itself." --Khalil Gibran

 

 

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 Thank you Karen, I shall save that quote in my collection of meaningful sayings.   

Sent to me by a friend today-thought a good time to share.  

"Wisdom ceases to be wisdom when it becomes too proud to weep, too grave to laugh, and too selfish to seek other than itself." --Khalil Gibran

Tim...Do what makes you feel good..you have earned it. 

Praying for you Tim.

Well, my "stiff upper lip" just cracked, am feeling a bit sorry for myself- I guess lettn' out the poison is somehow good for the soul.   not something I'm used to doing

hrsetrdr wrote:

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To all,

Thank you for your words of kindness and support, means a lot to me. I have mixed feelings about the pre-mature end of my treatment, as disappointing as it is to have essentially 'failed' to reach the ultimate goal of SVR, the flip side it that it's just such a welcome relief to getting away from the side effects of medication.

My gastroenterologist called a while ago this morning, pretty much reiterating that I will make a good candidate for one of the oral-only treatments which are currently in clinical trials.

I shall continue to be here on these forums, to help-if-I-can, to lend a sympathetic ear or just to share life's experiences. For me SVR may be 2 or 3 years away but when that day arrives ya'all here will be the first to know!

Sincerely,

Tim

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To all,

Thank you for your words of kindness and support, means a lot to me. I have mixed feelings about the pre-mature end of my treatment, as disappointing as it is to have essentially 'failed' to reach the ultimate goal of SVR, the flip side it that it's just such a welcome relief to getting away from the side effects of medication.

My gastroenterologist called a while ago this morning, pretty much reiterating that I will make a good candidate for one of the oral-only treatments which are currently in clinical trials.

I shall continue to be here on these forums, to help-if-I-can, to lend a sympathetic ear or just to share life's experiences. For me SVR may be 2 or 3 years away but when that day arrives ya'all here will be the first to know!

Sincerely,

Tim

Gosh Tim, that sucks. I am so sorry. 

I hope they have caught any trouble there in time. I have you in my prayers.

Blessings dear,....... Iris

Hi Tim...so sorry.  Cannot imagine your disappointment... Thankfully you were able to catch the issue with your eye(s)-that is the great news.  Hang in there...small moments at a time.

Tim,

Good catch on the vision issue. I might not have been so observant. But what a kick in the butt to have to stop after all that time. Please keep us posted. Maybe they will decide you can continue with a portion of the drugs.

Alan

Tim, so sorry to hear. We were so close in time on treatment. Hope you can come back!

So sorry to hear this news, Tim. Unfortunately, this is a rare side effect of tx and thankfully it was picked up on.

Please keep us updated.

BIG hug from me

Steff xx

Sorry to hear Tim. At least your liver has had a "rest" for 17 weeks. Good luck with the next phase.

Stay optimistic Tim.  Yes, your odds may lower, but they are definitely way over zero in terms of staying UND if you've made it this far.

Best,  Dave

So sorry, Tim. Our vision is important, too. Hang in there.

Today I had some ophthalmological testng done, as for the past week I had been experiencing a visual 'anomoly' in my right eye.   I still have more testing coming up in ophthalmology, but the doctor had detected some swelling of the optic nerve.

Tonight the ophthalmology doctor called and told me she had consulted with my liver doc, and the concensus was that I should immediately stop the Pegasys-Ribavirin-Victrelis triple treatment.

So there it is, almost 17 weeks of treatment behind me, and now....what?   I have not yet heard(probably in morning) from gastroenterology, but it looks like I won't be able to finish this particular treatment regimen.

I have yet to react to this emotionally...still kinda numb.

Oh Tim, what a shock, you must be reeling. .but thank goodness they picked up on the problem, your sight is so very important. 

You`ve done a good long stretch on tx, so that will have really helped your liver.  Give yourself some time for this to sink in, and try and keep your chin up, it`s got to be for the best.  Let us know how it goes. Best of luck to you, hugs, Jill xx