Prove 3 24 weeks; retinal Hemorrhage

[Andiamo1]

I went for my 24 week visit and followed it with a visit to the opthamologist to have my cataract checked.  Everything turned out more exciting than I expected when the eye exam turned up a retinal hemorrhage.  Luckily for me this happened in mid town Manhattan and I was able to visit a retinal specialist that is one of the tops in the world.  The damaged area is off to the side of the macula, so it did not impact my vision in any way.  It is the chance of another one happening that scares me.

So, the Hep guy and the eye guys are in a conference now deciding if I should immediately stop treatment.  In the end, I will make the final decision, should they decided to continue treatment.  I will not continue unless the probability of SVR is high enough to justify the danger of losing eyesight: if the eye specialist thinks that is the case.

The 24 week visit is a full physical with fasting required before the blood draw.  I then took my riba dose and the last Telaprevir dose.  I am now on an 8 week visit schedule with an interim visit in two weeks to go over the PCR results when they arrive.

stay tuned - Eric

[Andiamo1]

I know with diabetics, they treat with lasers.  In my case, they are not going to treat, since the damaged area is not in the macula and will not impact my vision.  The docs are recommending that I continue treatment and feel that it is low risk that it will happen again.  They feel this hemorrhage will resolve itself without any damage.

It sure is scary when it is your eyes though.  

I should have my test results next week and then I can get a better idea where I am in the treatment.  The prove 3 trial is going to provided the test results at the 26th week.
Eric

[Lady Lauri]

  How scary this must be for you. I would definitely have to put my eyesight first. When I read about all the sides,the only one that really affected me was the vision. I spent $220.00 going to an ophthalmologist for a complete exam. He saw that I’d been to an optometrist 3 mths. ago, recent glass's, etc. and was baffled as to why I was there. Kind of PO'd me.  I stated  'to be SURE my eyes are healthy before I start this tx. and for YOU to keep checking on them through out!" He did say he saw very little risk in chemo we're doing.I started tx with 2 'all good' exams on my eyes and told everyone the only thing that will make me stop tx is if it's hurting my vision. Of course, being 2b, much less tx and I totally agree with you on the less the better. Hopefully everyone is right that you've done enough tx thus far to achieve SVR.
In retinal hemorrhage, how do they treat that, stop it for you? What can they do?
Wish you the best and it heals up. Prayers for you to heal.
                                                                       LL

[Andiamo1]

Just got the recommendation to continue with treatment.

I will review the decision with them once I get the test results next week.

[Andiamo1]

I have been reading as much as possible about it.  It looks like it almost always resolves by itself.  Since it is eyesight, almost is not a great term.  So far they are thining I should continue.  I have not yet agreed with that.
Thanks,
Eric

[dlr2007]

What a scary thing to have to deal with! And you've kept such a great attitude about tx- I hate to see obstacles like this pop up for good people like you. I'm no expert on tx, but it sounds like you've got a good chance at SVR even if you quit right now. If there's more than a slight SLIGHT chance of more problems of this sort, I don't know if I'd wanna continue. I hope you and your docs reach a decision that you feel comfortable with. You sound like you have good judgement, so I'm sure you will find the way that's right for you.
  Best wishes and prayers,
Dee

[Andiamo1]

merryBe:  zmy blood  sugar is normal; this is strictly interferon related. Thanks

FL_Gal: thanks for the support.

Bug:  Glad to hear you are well.  I understand all the worry about SVR.  I am sure your latest PCR will still be undetectable..  I don't know if I am strong or just very scared about dieing from ESLD!  I have learned to live one day at a time and to look for something beautiful every day.  Doesn't always work, but it does help.

[merryBe]

sorry to hear of your problems. You didn't say if this is related to diebetes. Were you arlready diabetic, or has the tx brought it on? It's important to control blood sugar on the tx by every means necessary, including diet and insulin if necessary.

[FL_Gal]

I'm so sorry to hear that.  I hope that you have already SVR'd and that no further damage is done to your vision.  Glad to hear you have a good team of doctors.  

FlGal

[ladybug52]

I'm great, I think, haven't done my 6 month post pcr yet, but I have the lab ordered and intend to find out this week.
I think after only one tx, my life will never be the same....that's good in a lot of ways...but I can't imagine how all this impacts someone who's done this mutiple times. I hate when I hear of one of the rare side effects actually affecting someone's life like this.

Every little cramp of pain, I wonder "Is that Hep C or the tx?" I sound so paranoid,
because I am! Your'e really brave to keep fighting this long, were you always this strong or has adversity just made you stronger? Or both?
Take care, everyone's on your side but the hep c...
Bug

[Andiamo1]

TravelMom:  Thanks Jodi, and mine are with you and Amanda.

Myown:  I really appreciate your support.

[Myown]

I wish you the best Eric. I hope and pray that you have reached SVR at this point in time. You are a very strong person and have a great attitude especially for someone who has gone through as much as you have.  We all are routing for you Eric.

[TravelMom]

Just wanted to send good wishes your way...I hope whatever they decide you have already achieved SVR... My thoughts are with you...  Jodi

[Andiamo1]

drofi: Retinopathy is a known side effect of interferon.  So far no linkage with Telaprevir has been established. I believe It is mostly based on age and interferon from the research I did over the past few days.

I do believe that the shorter the time we are on these poisons, the better.

I can tell you, from being off Telaprevir for only one day, I am already starting to feel better!

Most importantly, thank you for the lovely note.

charm:  Thank you for your support.

[drofi]

Dear Eric,
I wish you the very best for your health and that you will reach SVR nevertheless! 24 weeks including 12 weeks with telaprevir should be a good chance.

Quote: "This certainly reinforces some of Jim's issues regarding SOC."

Really? What you do/did is no SOC. For me it is another hint, that a decission for Tx should not be done on the basis of hope for better days with telaprevir only.

[charm27]

Im sorry you had to go through this....hopefully soon you & the docotors will come to a final decision
regarding the next step.

I wish you every success in the world.

[Andiamo1]

You know, after all these years trying treatment after treatment, this news is the most difficult for me to deal with of any experience I had so far.  I would rather die from ESLD than lose my eyesight.

I know that is unlikely, but just the suggestion of it scares me.  In any case, I will just keep on trying.

[cruelworld]

now thats scary. i guess when it rains , it pours. its amazing how the thunderclouds always find the heppers. like jim says though, maybe you are out of the woods already.
im keeping my fingers crossed.

[Andiamo1]

This certainly backs up what you often advise people: SOC has plenty of risk associated with it.

Thanks for your encouragement.

Eric

[jmjm530]

Sorry about the problems. While complete data is not yet in, 12 plus 12 seems to be the magic number, at least with treatment naive's -- so hopefully you will have done enough for SVR should you and your doctors feel there is too much danger in continuing on.

All the best,

-- Jim

[Andiamo1]

Oops - I almost missed your post.  You haven't been posting much lately.  How are you doing?

Eric

[Andiamo1]

orleans:  The problem was caused by interferon not Telaprevir.  In any case, I have to pay for the treatment.

Forseegood:  Have you made any decisions about treating?  You should be elligible for the phase III Telaprevir trial.  I am sure there will be a center in LA that participates.

Willy: thanks for the encouragement.

[orleans]

Hey, Who covers the cost of his TREATMENT sx? Vertex I hope. Good luck friend. jerry

[Willy50]

Eric, I'm sorry that you had the issue.  I'm very happy to hear you were in position to get prompt medical care and that it likely won't affect your sight.
I hope you can attain the PCR results you want and keep your vision without risk.  I think there is a good chance that since you have continued on with the treatment that you RVR'ed and the stats show that very few who do so experience a breakthrough.  Yes; those stats only apply to prove 1 and 2 so far and we won't know how they pertain to Prove 3 for some time.  Still...it bodes well for your (and others) success chances.

Take care,
willy

[Forseegood]

I'm wishing only the best for you, in whatever you decide, and your eventual outcome...God speed...