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RE: I'm off treatment
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If I had any money, I would send you and Bri to Disney World. Isn't that where people go right after they do something incredible? You guys deserve it. As Speedy Alka-Seltzer used to say "Feel Better Fast". 

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
bauhaus76


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i hope everything goes well and wish you al luck from the universe! keep strong because you are..otherwise you would not had start this tx! beter times are on the corner!



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hep c 1a on triple therapy with incivek UND at week 12 ,week 24...going for 48 weeks.
Judy S


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You guys are the Best, most caring people.  I read through each of your posts twice, with tears in my eyes.  I don't know what I would have done without all of you during this.  THANK YOU ALL.

My personal update is that I feel very sick and "lost".   3rd day now of nausea, vomiting, diarrhea....still can't keep food in.  I'm eating toast with applesauce now; we'll see if it sticks this time.  Couldn't sleep well last night again, even with 1 mg Ativan.  The itching started Again, all over legs and arms, and little bumps again.

My 2:30 pm med alarm went off yesterday, reminding me to shut down all 4 med alarms.  Felt weird.  I keep looking in my fridge at all the PegIntron, Victrelis, Neupogen, & Procrit.  And the Riba in my pill case.  Can I ever get back to normal?  I've completely forgotten what "normal" feels like.  I'm going to donate all meds to my dr office on Fri; there will likely be someone who needs an emergency dose now and then.

Mallani, I know you and I were in the same boat and same place in tx; I'll be on this board, reading and praying you all get thru; you certainly deserve to be clear of this virus and life a decent life.

For those who aren't aware......my 2 drs informed me very early on that I may not be able to do this tx because of my extreme Interferon sensitivity.  One was ready to pull me off after first hospital stay, where b/p dropped to 84/40.  I had to switch drs just to stay on tx; my first dr thought it too dangerous.  Interferon kept me bedridden for 3 - 4 days each week all this time, and it messed up my brain so much I was near suicidal 2 weeks ago.  It's done A LOT of damage to various parts of me, particularly my left arm from elbow to hand, from first shot.  My body has been screaming STOP for the past 3 weeks and now it's rejecting every pill and food.

I will keep you guys informed on my recovery; been researching half-lives of all these drugs.  I would like to be able to stop vomiting & diarrhea and be able to leave my bed for longer than 20 mins.  Then, I would love to be able to cook a meal again for my little 10-year-old Brianna...........for 6 months that child has been left to create her own meals as best as she can, as I literally haven't been able to cook.  She's taken care of our cat and many responsibilities by herself.............she's done A LOT of growing up in these past 6 months and I feel horrible that I've had to put my baby thru this.  She's been my only help and she's had to help me off the floor the 3 times that I've fallen, plus call 911 twice and share the ambulance and hospital bed with me.  She's been thru enough, plus all the worry that I would die and I'm all she has.  She needs her mom back.



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.
davesf


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Judy, you are amazing.  You have been through one of the roughest rides of anyone I've seen on this board.  You have been a trooper with optimism and a fantastic attitude towards dealing with all these roadblocks being thrown at you.

Hope to see you feeling better soon.

Dave



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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
DJ


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Oh Judy,

I didn't realize how sensitive your body was to the medicine.  You made the right decision.  I know you are fighting to be around to watch your little girl grow up,  and that is what kept you going as long as you did.  You are an awesome mom.  I bet when the new drugs come out that don't require the shots you will do much better and hopefully that will be soon.

When I was your age, my twin girls were also 10.  And I have had Hep C since 1979 from a drug tranfusion (although I only found out I had it last month).  But I have no symptoms.  I am 52 now and my twin girls will be 19 next month and they are starting college.  I feel fine.  And my physical at the doctors show all is well.  I only learned I have Hep C because I decided for the first time to donate blood.  Otherwise I would still not know. 

But my point is...I am 8 years older and just now getting ready to start treatment and I am doing pretty good healthwise.  And I have a feeling in less than 8 years those new drugs will be out and you will be able to treat without the side effects.  I can tell you once your daughter can drive it helps because you won't have to take her places and she can run to the store for you and stuff.  It really makes a difference. 

And I don't think they know all the details of these drugs yet, so who knows...you may have hung on long enough to win this battle anyway!  And please let us know how your tests go over the next months.  I am praying that you cleared it in these 23 weeks and won't ever have to go through another treatment again.

Take care of yourself.  It will take a while to feel better, but just keep reminding yourself that in a month you will be feeling better.  And you and your little girl are going to have a wonderful holiday season :)

 



-- Edited by DJ on Wednesday 15th of August 2012 08:00:16 PM

__________________

Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
iggle


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i've been on the brink of quitting a few times. this treatment is just not easy at all.



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Karen


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Hi Judy,

You have been through enough...

When we set a goal (in this case making it through treatment) the intention we set in our mind can entrap our instinctive vision of what is best for our spirit, our life...  I applaud your courage to have tried and your bravery to know when to end what has been more like a fight.

Take the time to focus on the rich sweet areas of your life and the quality that you and your daughter deserve..

Rest easy...many hugs-and blessings.

PS-your dreams have a great sense of humor.

(had bizarre dreams and was starving in my dreams.  I made a hamburger patty in the shape of Mitt Romney's face and fried it in my dream, and I don't even like hamburger! )



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
mallani


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Judy, I feel for you. We are at the same stage and you are one of the few taking longterm Vict., so I feel a sense of loss. You have put up with so much- it makes my Sx pretty trivial. At our stage of Rx, most people are looking forward to finishing, whereas we are only halfway. That is hard. Fully understand your decision and hope you rapidly recover. You are young enough to be able to wait for the all-oral stuff. Hugs.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Iris Dragonfly


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Hi Judy, I know how hard it is to be conflicted in your mind. It is similar to a griveing process, because you had made up your mind to do this, and now that you are to ill to go on, it feels like such a crushing blow to your esteem. WE are here for you what ever you decide. I would think that keeping food down is essential. Be good to yourself, and don't beat yourself up, you are dong all you can. Having to go the hospital was bad enuf.  I am praying for you, be well Judy. BB, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
DJ


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Judy,

I just realized that it is just you and your daughter at home.  I can totally understand your decision to stop.  That is amazing you have gotten this far.  But being the only adult in the home, it has to be so hard, because you are also responsible for a little girl as well. 

I keep hearing that in 3-4 year new drugs will less side effects are expected to come on.  By then your daughter will be older and more self sufficient and the treatment may not take as much out of you.  It sounds like you gave it a really good fight.

 

 

 

 



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Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
K2


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Dear Judy,

as has been already said, you have shown emmense determination and perserverence. You deserve the praise of a hero.

My daughter is 10 and I often think of you when I have my moments (Phoebe jumpped in my seat the other morning and I broke down into tears, felt silly and childish). To have sacrifised your physical and mental health to gain long term health for your babies is what any amazing, dedicated mother would do. I understand you have done all you can in regards to this treatment and your body has spoken. It really is a case of weighing up the benifits against the 'torture' (to you and especially your daughter).

Knowing all you have endured I too would be inclined to say enough is enough and feel you no longer have a choice. I pray that after all your body has gone though that no trace of that mongeral virus has survived and that future tests provide you with svr status.

You have been a wonderful support to me and many others here. Thank you.

Rest easy with your desision and don't be a stranger.

Big hug

KristyX

 



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genotype 1a. started pegasus and riba on 25/03/2012 added victrelis after 4 weeks, treatment naive. CHC. 4 weeks UND & continue to be so far. Finish tx 6/10/12. Fingers crossed for SVR.
DJ


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jrc wrote:

Wow i am shocked and lost for words! Is it possible to take a week long break? I have heard of people doing this before! If you need to talk judy im here !I had no idea it was this bad for you. Please dont hesitate to message me here or FB! Get some food and rest!

 

Maybe you could talk to your doctor about this.  Maybe a break would help you feel better and allow you to continue treatment.  I am sure you are just exhausted and feel you can't go any longer.  Maybe tomorrow you will feel a little better. 

 



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Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
hrsetrdr


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Judy,

I know that you have given this decision the utmost in careful consideration, I sincerely hope and pray that "something" will help change your mind, and give you just one more...just one more iota of strength to carry on.

You will be in my thoughts and prayers.

 

-Tim



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
jrc


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Wow i am shocked and lost for words! Is it possible to take a week long break? I have heard of people doing this before! If you need to talk judy im here !I had no idea it was this bad for you. Please dont hesitate to message me here or FB! Get some food and rest!



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Geno 1 A Started Tx w/ Victrelis  8-3-11, Viral Load  21.2 Million,  Und Weeks 4 Through 28 ,End Of Tx 2-15-2012 !SVR
Judy S


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Thank you DJ and Jim; your words mean SO much to me.  I'm extremely emotional and torn over this, and I don't know what's going on with me.  My body is rejecting everything.  I'm able to hold down Gatorade now but I can't eat; everything I try to eat comes right back out.  This morning's Vic and Riba came back out again, too.  I hope this goes away soon; I'm getting worried.  I feel my body took all it could.



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.
JIme


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Judy, you are one of the toughest people I have ever come in contact with. I remember your first day with interferon, and you still  continued. Most people would have headed for the hills after that debut, but you stuck with it and kept going.

You have gone on way longer than any reasonable person could expect.  I salute you and your dogged determination to stay on these meds. I have never met anyone more determined to get cleared of this virus than you. If you think it is time, then it is time.  You have fought a tremedous battle over the last 23 weeks. In my book, you have won.

May what you have done here be an example to those that follow, that you can get through almost anything if you want it bad enough.

You wanted it bad enough.

If there is any rhyme or reason to this world we live in, you will remain clear and reach SVR.  I will pray that this happens for you.

Get some rest. And some food. God bless you.



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
Judy S


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Thank you Kelly.  I'm so torn but my body is just shutting down.....I've been feeling it for past 3 weeks.  I will remain on this forum; you all have helped me SO much.  I got through 23 weeks of torture; hope it did some good.  Hugs to you, too. 



__________________

Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.
news


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For the first time since I can remember, I am speechless. Very rare for me. Be sure and talk with your doctor. And if you change your mind we won't pick on you wink  But I totally understand not wanting to suffer any more.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
Kellyw


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I'm soooo sorry you have to quit. I imagine it was a big decision to make. I hope you feel better soon. Let us know how things go from here. Big hugs

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Kelly 2b dx 8/11. Tx begun 12/30/11. Apparently had it for decades.
DJ


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I'm so sorry.  I know this was a hard decision.  I really don't know much about this, but if you haven't tried treatment before, my thought was whether you might be able to continue on just the two drugs if the triple treatment is too much?  Maybe that wouldn't help how you are feeling.  I'm not sure which drugs are causing you problems. 

And I haven't started treatment yet, so I haven't gone through this yet.  But I am sure it would be hard to go through this when taking care of a young child.  My twin daughters will be 19 next month are in college.  Thinking back to when they were young, it would have been so hard.  Perhaps in a few years when new meds are out and your daughter is older you can try again. 

I really wish you all the best.



-- Edited by DJ on Tuesday 14th of August 2012 09:38:35 PM

__________________

Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
Judy S


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Alan, I have a dr appt on Fri.  My dr saw me 1.5 weeks ago and noticed I've been looking very poor.  I would continue if I could just hold down food and water, but I'm only getting worse as time goes on.



-- Edited by Judy S on Tuesday 14th of August 2012 08:33:09 PM

__________________

Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.
Judy S


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I made a HUGE decision this morning at 8:00.  I'm stopping treatment.  I did take my 7:00 am meds, but I will not take anymore.  I've done 23 weeks of treatment; my body cannot take anymore; I feel I am dying.
 
Yesterday morning I got my first break from the physical and mental torture; I woke up feeling good!  Then at 5:30 pm the nausea hit and it was bad.  By 6:30 I was violently vomiting; thought my back would break and the Victrelis that came up was pure fire in my chest, throat, and nose.  I couldn't breathe for a while.  Kept vomiting, about 6 times until I was so weak; couldn't eat or hold down water.  I've lost 11 pounds in past 6 days.
 
Couldn't sleep hardly at all last night; had bizarre dreams and was starving in my dreams.  I made a hamburger patty in the shape of Mitt Romney's face and fried it in my dream, and I don't even like hamburger! 
 
This morning I barely made it downstairs for my protein shake with 7 am meds, which I took at 6:20 am.  Then.........nausea and diarrhea for next few hours.  I cannot hold down any food and everything is just coming out of me; my system won't take anything anymore.  My legs were so weak, I had chills, and couldn't breathe properly again; just SOOOOOOO worn out and weak! 
 
I have STRUGGLED and contemplated and this is it; my body is telling me it is DONE.  I am falling apart both physically and mentally.  I've held on as long as I possibly could; No More!
 
I don't even have my "good days" anymore.  This has reached its end.  Can't even manage the basics anymore, which is hold down food and water. 


-- Edited by Judy S on Tuesday 14th of August 2012 08:28:06 PM

__________________

Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.
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