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233616 tn?1312787196

Great beach trip but life's a beach...3 mo. pcr

Well I had the greatest 2 months of this decade, got to get out in my garden and plant a HUGE garden, tons of new shrubs and roses, catch up my taxes, and feel human for the first time in 2 years.
88 wks of chemo stole away all of my strength and most of my joy, it's been good to feel that coming back...makes you really see life anew.

SO things were looking up...got away to the beach for 3 days (1st trip in 4 yrs)..

and the beach was great!!  

but came home to face the music..knowing my labs were in process.

and yes life is a beach...more at sometimes than others.

the "beach is"...my HCV is back.  How's that for a summer fizzle.

I'd cuss but we aren't allowed...so duck, carp and then some.

mb
54 Responses
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99052 tn?1270983520
Wow I kept seeing this thread but never read it just thought you had a nice time at the beach. sorry to hear you did that long a$$ TX and relapsed I had the most amazing time right after 48 WKs of TX thought I was free and clear dancing around Florance ITA but now I am waiting for the new line of TX  
Helpful - 0
230202 tn?1370793579
I am very sorry to hear this Merrybe.
I know you can get through this......you're a strong person.
take care and all the best to you
thinking of you
Linda x
Helpful - 0
Avatar universal
you are a fighter,never say die,I no how disappointing it must be,take a break and get all you strengt back and come back and slay the dragon once and for all,good luck      Power
Helpful - 0
Avatar universal
i see you on hear for awile .you are an intricate part of the forum . dont clam up .  you always gave long imformative answers .  most ,know you did all you could -------- i very sad for this .
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Avatar universal
MYS
I'm so sorry about this.  You really gave treatment your all.  
MYS
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498948 tn?1253055841
I'm so sorry to hear your news.  My heart goes out to you.

Kathryn
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223152 tn?1346978371
I am so very sorry.  I know you gave it a good long shot.  Some of us have such resistent virons it is amazing.  I hope you can plant more and enjoy that garden and maybe -- when the PIs hit the market, in a couple of years -- we will all regroup and try this again.

frijole
Helpful - 0
619345 tn?1310341421
Hola just heard and I am sad MerryBe  but you will survive to be better than before in so many ways  abrazos besos and positive thoughts for a speedy recovery from this bummer of news  
baja
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92903 tn?1309904711
I'm really sorry for you Merry. THis is a huge a huge disappointment.
Helpful - 0
233616 tn?1312787196
wow, I'm just really really touched that you all responded so tenderly.

All I can say is, and it took a few days for the shock to settle in...

all that I could do, I did. All that seem reasonable, prudent or had a scientific basis, got done,
and all the prayers also. My hubby and I both were in prayer, as were many of you.

But I love what St. Paul once said "thank you all that you have not judged me, in this thorn in my flesh which God has seen fit not to heal"....and elsewhere he said "this God, who has given us such beauty and mercy in this life, shall we not be willing to drink of whatever cup He gives us, be it joy or be it suffering?"

This comforts me, knowing this too can be a refining fire.
And a gift does not always come in a well wrapped package...
sometime a shabbily wrapped gift can be one that when opened becomes  a true source of beauty. The joy of each day, the need to love more utterly and completely, the willingness to surrended every corner of our lives, these gifts have come from this awful HCV. Who would have thought??
No, I would not have chosen this disease, but I'm reminded that it has brought eternity into a far fuller focus, and given me time to appreciate much that I used to take for granted. The glass remains half full as long as we can say the the last word to any story....is love.

As far as treatment, I'm not in any hurry, This last treatment was a full year and a half on the couch first because of the gall bladder exploding and liver inflammation, then because of the 10 Hemoglobin, at which level I could not function.

So I will have to wait for the PI's WITH rescue drugs to even think of retreating.

I am so sorry that any have to join the relaspe list...but at least, we have each other.

that's all for now..I just finished folding our small corporation due to all this health stuff, and now I have a hundred more forms to fill out....but as Arnold once said, I'll be back.

mb

Helpful - 0
373023 tn?1318524578
MerryBe, I am really sorry to hear this news, I know how hard you worked to get SVR this time around with the length of tx you endured...
Thinking of you lots.
Pix & Jb....XX
Helpful - 0
750120 tn?1252455030
Well, Merry

There is the obvious concern as to the virus returning and I am right there with you on that.  The thing that inspired me was that you seem to be doing the quote I put in my profile; "Trying hard to focus on the flower instead of the thorn."  Relive your trip over and over and go do it again.  Live every day as if it is your last and see the beauty in everything.  
Joey
Helpful - 0
547836 tn?1302832832
MerryBe, i'm so sad to read this.  you have been amazingly courageous in every way.  and for all that you've been through, you didn't deserve this kind of krap.  i am so sorry.  my heart is crying.

please take care and try to stay merry.  enjoy life, you will succeed,
Helpful - 0
362971 tn?1201987034
    After 88 weeks I am so sorry. Take a break and maybe the damage has reversed somewhat so you can wait for the PI's.

Bobby
Helpful - 0
338734 tn?1377160168
I missed this post the other day. I am so sorry to hear those awful words. I know you'll keep up the spirit. Please know that I'll keep you in my thoughts and prayers. We'll both get the chance to fight again. I'll be waiting with you. Keep in touch.

Meantime I hope you are feeling better.

Brent
Helpful - 0
Avatar universal
I'm just speechless, merryBe.  So sorry to hear this.  Take the time to enjoy more of those beach moments for awhile.  Even a fighter needs to take enough of a rest break to be able to get back in the fight again.  Good news is that the Phase III trials look very promising towards new and effective drugs on the market very soon and I'm hoping they're the charm for you.
Helpful - 0
Avatar universal
Thanks so much for your concern.  I spent lots of time checking it out and feel confident it will be ok.  Joe's prescription is only 3 mg. This is a teeny-tiny dose.  50 mg.'s have been given to many , many people with no ill effect to the liver.  It was an huge dose given to obese people that showed some negative impact on the liver. ( I don't remember the dosage but it was enormously beyond the norm .  Our family Dr. could see no harm in that small of a dose.  He gave us a prescription with his blessing.  He didn't know if it would help but agreed that it was safe and worth a try in a case like Joe's.  
I read about Clemizole but I couldn't find that it was still being manufactured anywhere at this time so I stopped pursuing it.  
Take care for now,
Ev
Helpful - 0
Avatar universal
As HCA has noted; you are a responder.  That bodes well for you if and when you treat with a PI.

I think you've learned quite a bit that will help you when you next re-treat.
It will happen!!!

I'm sorry to hear that you relapsed but I feel that you are at the tipping point.  A few more things done well, a better TX and you will make it.

best wishes....

Willy
Helpful - 0
Avatar universal
HCA
Sorry about your relapse-I do feel for long treaters perhaps more than other treatment failures.
I also looked for details of your virolgical response,but could not find them,although Zazza has.
Of course it all looks very clear with hindsight that the early viral rebound was a serious threat and that a variant would likely emerge post treatment even with an extension.
The good news is that you did reach undetectable status which means you should have relapsers odds if and when you treat with telaprevir.
If you can knock it down early you will clear
Best Wishes.
Helpful - 0
Avatar universal
So sorry to hear you relapsed. You fought so long and hard to beat the odds.

You might remember I am always interested in numbers? I looked up your viral loads as best as I could in the archives. I am uncertain about the dates, but I believe I got the numbers right. When did you finally reach UND?

Baseline viral load: 1,400,000 IU/ml (log 6.146)
Week 4: 300,000 IU/ml (log 5.477)
Week 6: 700,000 IU/ml (log 5.845)
Week 12: 555,000 IU/ml (log 5.744)
Week 13: 55,000 IU/ml (log 4.740)

Take care,
Zazza
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288609 tn?1240096756
My heart goes out to you. I am so glad you were able to garden and go to the beach! How could this nasty little virus come back at you. Not fair you fought for so long and so hard I thought for sure you had nailed it. It teaches me to not be to cocky, I have my 6 month coming up and UND is all I feel ready or able to accept.
I can't fathom how hard that must hit you in the gut! At least you are feeling better.
Stay strong and keep us informed.
You have helped so many
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Avatar universal
Not trying to argue here, it's just that the warning on LDN and hepatotoxicity is old and has been pretty thoroughly discredited by subsequent studies. If anyone would like to look at the I'm referring to please private message me with your regular email and I will send you some documents. I have many more studies than I have posted on the other threads that deal specifically with this subject.

Mike H
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Avatar universal
Really sorry, hate that word "relapsed", its like someone gives you a swift kick in the gut. Yours might be different but i had no problem with blue cross my first tx, even when i extended to 86 weeks.

Had checked with them on retreating before i got in this PI trial and they said there would be no problem covering a second tx.

Take some time off, give yourself a break. I'm sure in time you will go after this again. Like my doctor said "we don't give up that easy and your a fighter"

Best to you

cando

Helpful - 0
233616 tn?1312787196
Thanks for all you wonderful people...just knowing you are all here makes this easier to handle.

I'm already thinking when I've licked my wounds of what'll come next.

Is it true insurances won't pay for a second tx even when the new PI"S come out??

ANyone know the answer here?


Evangenline,
thank you for that encouragement, I see what you mean...at least relaspe gives me a better shot at retreating......

poor Joe has been through so much, maybe the LDN will help him, but have you given the old antihistamine Sanford considered any thought? Clemizole I believe it's called.
I'm going to have to look into it as it seemed to lower VL more than anything else they found, and hopefully it isn't liver toxic....I'll have to do more looking into it now.

The LDN has some liver issues just like anabuse does. Anabuse works on the principal of so entirely commanding the time of the P450 cytochromes that there are no chemicals left to detox the alcohol, and hence one gets very very sick as a result.
The alhoholic then hates how ill they are, and usually stops, but the trade off is liver damage, even in healthy people it's a real concern.
I believe the naltroxone blocks the opium receptors and has warnings for liver patients,... I'm not certain this is a good fit for a liver patient, it would depend on how the liver matabolises it, however the low dose may not be as much of a concern.
MS patients have seen some improvements, but MS patients don't have livers teatering on the edge of failure for the most part. I'll have to see what the Flockhart research shows for naltrexone, if anything. Did you check into that aspect of all this?

I do know this much, just because they think something is safe doen't mean it is.
They gave me a "liver safe" antibiotic during tx for instance...and it started to shut down my liver...what is normally safe does not apply in stage 4.

so if you do add this you will want to do some very close monitoring of Joe's labs.
In any case, everything we try is pretty risky in stage 4 LD, but we all do keep trying right? I just know that the "do no harm" oath will come into play.
Reason is, at higher doses naltrexone does cause issues that is known, but for a liver impaired person the small doses could ACT or have the effect of larger issues. Remember stage 4 is like having a liver the size of a young childs, with far less capacity to detox stuff.

What did Joe's hepatologist say about the LDN? I would suggest you do this with his knowledge so that you can head off any trouble by watching the labs.
Just to be careful here, I know you know this.

mb
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