UND at Week 6 AM&Azing

[Trish77]

I posted this in the R1626 thread for those that venture in there but wanted to post this all on it's own

Week 6 results today - UND to a sensitivity of <15

I know the war isn't quite over yet .. but UND is sure one big battle victory in that war.  

There is no way I would have managed nearly as well without the support, knowledge, patience and understanding of everyone here on this forum.  No better cohorts could there be than on this forum right here.  You all are like gold to me.

I get to tell my kids now.  How lovely is that.

And having said all that ..... I have to say that Andiamo's UND is still the sweetest news I've heard all day...just not the sweetest news my kids will hear today.  :)

Bless you all.  You all have surely blessed me.

Regards,

Trish

[Trish77]

That's excellent news!!  One less source of stress..it certainly does take a weight off.   Hang in there through the tests and all the prep.

Have an awesome weekend. :)

Trish

[DragonTamer]

Hi Trish,
Not sure if you read, on the other thread, But got the good news today....my insurance is covering most of my treatment (drugs)!!!!   Not the fertility clinic! LOL   My Co pay will only be $30.00  a month! I was amazed!!!   I was so worried this would wipe me out!  Apparently I have better insurance than I thought. phew! This has been a huge weight off my shoulders, now I can focus all my energy  on getting well, without out having to worry about the financial aspect!

I hope your week has been a good one! Been busy for me...waiting to get back my last lab test results.... a little finger nail biteing going on on that (not literally hate biteing fingernails) just a bit anxious to see what comes back. New Alpha Feta Protien  results ect...

Hope you are feeling more than grand!  I am beat... hitting the pillow...
Nite nite from the States.
Dragon Tamer

[Trish77]

Thanks for the note, Jasper. :)  I just wanted to make sure I got the best start possible, you know?  Then I ended up in a drug trial and a good one, with all the testing and meticulous care that goes with it.  Go figure, eh? :)  Thanks for your thoughts and I do plan to stay positive...all the way to SVR whenever I'm able to celebrate that!  So glad you get to do that yourself. :)

Take care, Jasper.

Trish

[Trish77]

Let me qualify the drugs are not covered comment.  You can apply to the provincial drug plan for coverage of whatever your work benefits don't cover.  If your income warrants some or all coverage, you will get a partial subsidy of some kind, perhaps a complete subsidy in some cases.   However, for HCV persons, you're covered for one round of treatment only for HCV at the moment.  And, in my case, I was turned down for coverage because I'm early stage damage.  I'm hoping that changes, there are efforts towards that being made and I'll see how that goes.

[DragonTamer]

I was shocked to hear your drugs are not covered. I thought Canada was like most European countries. When I lived there everything  was covered. Of course I was never sick, so I didn't need it then! Talk about ironic!    Do you also take the Peg/Ribavin with the other drug in your trial or completely different drugs?

Well what ever it is, it is working now and giving you that "hope" to  go on for the rest of the tx. Hope is a great healer!    Good analogy...Willy Wonker showed anything is possible for anyone!!! :)

[geterdone]

All the worry in the beginning and beating yourself into the ground about the what if’s and lookie what happened! UND at week six. The body is truly a marvelous piece of Bio machinery, Congrats! Stay positive and keep moving forward.

jasper  

[Trish77]

My drugs aren't covered, my medical appointments and tests are covered, which is significant on it's own.  I go back and forth between being grateful for this and being frustrated at the different things I've run into in the public health system since my diagnosis.  Our care is free to a point and we are limited to the care that is provided.  I find that to be mostly good and I'm dealing with the parts I find unacceptable.

I'm not free just yet, even though UND is a significant milestone.  I need to stay that way for the duration of treatment and get through the remaining 39 weeks.  Then I need to test clear six months after stopping treatment.  THEN I am free.

Clearing at 6 weeks is great but not unheard of.  With this virus, the sooner you clear, the better your chances are and clearing at 4 weeks is considered RVR - Rapid Virological Response - and your chances of an ultimate cure when you clear at 4 weeks are considered to rise significantly at that point.  It's almost like getting Willy Wonka's golden ticket but not quite because it's still not 100% .. but getting up there at 80%+.  Everybody responds differently to the drugs .. I have no secrets .. I'm on the drug trial and it's entirely possible that the trial drug has made the difference for me.  Others on regular SOC at the moment on this forum have cleared sooner than me AND later .. so it's hard to say.  If there was a magic formula, we'd ALL use it .. there are certain things we know help more than others but no magic formula.

Take care.

Trish

[DragonTamer]

Hi Trish,
Hope you are enjoying your Sunday. I forgot you up in Canada. I suppose your treatment was payed for any because of Universal insurance? Not as lucky down here....it is so insane.  I lived in Europe for many years...coming back here after not having to worry about insurance for so many years was a real shock. I think I contracted the virus from An acupuncturists there. But also had a blood transfusion 20 years ago here???? But I have learned 2b is more prevelant in Northern Europe so I am swinging towards the acupuncture. But will never know and it really doesn't matter but I'm sure for those of us not really sure it is always an ache in our heart to know for sure.

Well I am just hoping the insurance will cover it. Worry about having it is bad enough!

Yes laughter is the best medicine! I work with kids and they keep me UP and laughing....
being away from them for the summer, while i am on treatment will tough though...I will need them most then.  I am still thinking of getting a puppy! That should do it to! :)
Did you continue to work through treatment?
I am just so happy for you that you are free!!!  and after only 6 weeks!!!  WOW! Did you do anything different? Take supplememts...eat differently?   What is your secrete girl!! LOLOLOL

[Trish77]

I'm SO glad you can laugh about this now ... that's a really good place to be!!  It bodes well for you on coping with your treatment to be able to laugh at these things.  I know when my doc started telling me the side effects of the tx to expect...and he just kept going and going .. and finally I just had to ask him.  "So...what's the DOWN side here???"  

I'm sorry .. I can't help you with the cost of your Pegasys, I don't know what it is in the U.S.  I just know that the total cost of tx drugs here in Canada for the 48 week treatment is about $20,000.  I don't know the breakdown between the ribavirin and the interferon and I'm hoping someone else will jump in and tell you.  They might miss the question in this thread so you might have to post a separate thread on cost of drugs to get proper feedback.

You are NOT a burden to be asking a bazillion questions...and in a forum, you get the benefit of asking everybody at the same time as you ask one person and other people can jump in with information also.  

You're doing well.. you're in training like Rocky!! For the big prizefight...the virus is getting the big K-O. That's kinda how I looked at it .. with some amusement, I might add.  

We ALL started out with little to no knowledge of this disease and I still have alot to learn myself.  We all came here for information and support and we just stayed.  It's a good place to be.

My day was AWESOME, btw...thanks  :)

Good luck ongoing. :)

Trish

[DragonTamer]

Thanks for the pep talk Trish...you have been so supportive since I joined, I really treasure your advice and comfort.  I was half asleep and so discouraged  when I wrote last night. Hence all the typos... But on the morn..the whole thing seemed rather comical! I called my doc's assistant and we both had a good laugh actually...she could not believe it either!  I live in a fairly large coastal city, on the east coast....and went to a big chain....the pharmacist could not even figure out how to fax the info to the "fertility clinic" LOL.   Therefore I think I was just dealing with simple incompetence. Whenever, after talking, for a half an hour, to the woman explaining it all 2 or 3 times...she still said "good luck honey I hope you get pregnant on your first try!" I was just speechless and had to laugh!  Obviously the woman should not have been answering phones and dealing with such serious issues. Maybe she was the cleaning lady trying to be helpful, I don't know,,, it was like a Twilight Zone episode! LOL
In any case after telling my doc, they said, "we are going to try another route don't worry" and contacted a mail order pharmacy out of Florida... they called back within minutes it seemed... took the info, were just super nice and wonderful and competent!  The woman who called me and I became fast friends, on the phone, and she even invited me down there sometime! LOL what a difference from insisting on getting pregnant! :)
So now we all await the big "OK" from my insurance Co.

I almost dropped the phone when I heard the Pegasys was $2,000 a shot a week!   This was the non generic form....does that sound about right to you??  Florida has the generic but I am not sure what the savings will be but it will be something.  I don't feel comfortable talking about money and don't want to seem like I am prying but I wonder if these drugs have different costs in different parts of the country...and are some insurance Co's better than others in covering?  

Thanks again Trish I don't want to be a burden asking you a bazzilion questions, I am just trying to put the jig saw puzzle together.  I am now formulating a nutrition program for myself pre and post...that has been keeping me busy and confident....Knowledge is Freedom! :)  

Hope your day was EVERYTHING you needed it to be!!!    I might not have a lot of knowledge yet about the disease but I have an open heart and shoulder to lean on whenever you need a friend to just be there and listen.
Dragon Tamer

[Trish77]

I'm very confused ......do you live in a small place with only one pharmacy?   I went to the pharmacy closest to me in early days .. my first doctor had given me an RX for my drugs even though we hadn't settled on a treatment date yet, it would help me gather information to make my decision.  I went to the pharmacy closest to me to see if I could get the drugs there and he wasn't familiar with them.  He couldn't tell by looking at the prescription and his books how many pills I'd be taking or information on the injection or much at all.  He was very sincere and trying very hard .. and while I appreciated that, I wanted to deal with someone with experience.  So I went to a bigger pharmacy, one of the chain pharmacies and they knew all about the drugs, had the forms to request funding for the drugs and were very knowledgable.  So .. perhaps you might want to investigate a different pharmacy.  I don't know how your insurance works, if you have to go where they tell you to .. but sending you to a fertility clinic seems whacked.  So I'd check out other pharmacies on your own and then let your insurance company know of other options perhaps.  

Strange story and I'm sorry for your frustration.  The irony of sending you to a fertility clinic in your situation is a bit much to take, I'm sure. Things like this DO knock the energy out of you .. so rest up and relieve your frustrations in whatever way works for you and take good care of yourself.

Please let me know if you find other pharmacy options or if that's available to you?

Take good care.

Trish

[DragonTamer]

Tonight I am scared, tired and frustrated.....My pharmacist/ insurance company sent me to a "fertility clinic" because MY "normal" drug store said they did not carry the Peg/Rib..??  and I was left dumbfounded and wondering in  my head what kind of people am I going to be dealing with through all of  this...??....after talking to  a VERY nice woman who sounded like she was     circa  200 years old , from the so called fertility clinic pharmacy.......and after telling her 3 times these were not fertility drugs!!!!!! She still was  insisiting I could get pregnant on the first try .....but " I could try again and do no tdespair if  I don't!!!     So I just gave up trying to make her understand. I knew then my meds were coming from some where else!!!!    And how we might be able to adopt a child without this B;S was a mystery .... Perhaps finally the fertility clinic will  there when  I can use them!!!!!
A lthough how many of us wish they were?????    I have wanted to adopt a child so badly!!!!!      I can give a a child GOOD rich healthy life...... and  now oh yes WITH a PUPPY too!!! LOLOLOL   :)

Too tired Trish .....to talk more/////   BUT TELL ME ANY ONE everything you can share with me PLus why oh why does  this make us sooo   bloody tired and what do others do to keep thier energy levels up??????   All suggestions welcome!!!
LOVE  AND HUGS GOOD NIGHT!
DRAGON TAMER

[Trish77]

DT .. I'm in the Hoffman LaRoche R1626 trial, it's another PI, only a polymerase inhibitor whereas Telaprevir is a protease inhibitor.    

The thread I referred to is here:  http://www.medhelp.org/posts/show/465519 - we've been sharing results and info about our trial experiences with each other as we go along and it's been a great help to sort through things as they come up.  

So no .. I'm not on regular treatment.  I'm taking Peg but not sure if it's at half dose or full.  I'm taking ribavirin and it's at full dose.  Then there's the trial drug, and however much of that I'm on.  All will be revealed to us at the end.  

Alternative tx's .. by that if you mean are there alternatives to interferon and ribavirin, that's the main treatment.  If you were going to treat, that's your core.  Then there are ways of approaching that treatment and then there are other things people are starting to add to the mix and ways to tweak your traditional treatment to a certain extent depending on your own circumstances and the attitude of the docs taking care of you.

Trials are another matter.  There are trial drugs being tested at the moment and others coming along that we're hoping will improve treatment regimens and outcomes for all of us and those coming after us.  

I hope some of that helps?

Thanks for the kind words ... with treatment, we deal with the cards we're dealt and I've been dealt a reasonably good hand so far.  I'm able to keep working and keep pushing through a number of other things.  I have my bad days too like everyone else and this forum and the people in it are a good support.  

Good luck to you starting treatment in June.  You're a 2a I see so short(er) treatment regimen for you .. although treatment is treatment!  How are you doing with getting all the information you need from your doctors?   Keep posting and asking questions.  :)

Take care.

Trish

[DragonTamer]

Wow! What wonderful news to turn on to! I have been away and not online for a couple weeks. I come back to hear such a blessing has occured! 2 blessings indeed!!!
Great inspiration for we newbies!  I start treatment in June. With inspiration like this all around me I feel confident I will beat this thing more with a positive attitude like yours Trish than the drugs!  

I was wondering Trish, someone  mentioned a trial? I missed all that..   did you not take the traditional Peg/Ribavirin tx.   Are there other alternative tx's?  How can find that thread about the trial?

Congratulations again!!!!  :) :) :)
Dragon Tamer

[Wassup]

That is ab. fab,( Absolutely Fabulose ) I don't think I've ever written that last word before. I probably had it on a spelling list in fourth grade, but that was like a century ago. So, This all shortens up to- Congrats. Hooray, Yipee, Yay, Thank Heaven. you sure deserve a big squeezie hug, well done, I am sure you know by now, how happy am for you. ( Not so short, but sincere).

Andiamo, same to you, but more of it.  Such tenacity, courage, Bravo, Bravisimo!Hugs,  Ant B

[dointime]

Fantastic news Trish.
dointime

[meki]

You know I am just smiling --- and you know I'm like totally giving the cheers sign!

I think it's almost time to pop that Apple Cider Champagne.

*G*

[Trish77]

Mikki .. thanks so much .. I'm hoping for good results from you soon too!  
Willing .. yes, a long ways to go yet but that is certainly a big motivator.  I actually forget the qualifier on that .. but it does date me, doesn't it. :)  And you for that matter..lol :)
Thanks Mike, your thoughts are always appreciated.
Bobby...thank you! and I hope we're celebrating SVR together. :)

Elaine ... thank you so much for your thoughts and your note.  You have much on your mind and yet you take time to celebrate with me.  Your nickname suits you well.  I'll continue to keep you and Nick in my thoughts and prayers.  

Trish

[Bobby1952]

     Congratulations !!   We will be 6 months post tx at about the same time. Here's to SVR.  

Bobby

[mikesimon]

Congratulations and good luck going forward. Be well, Mike

[willing]

you left out the traditional qualifier on AM&Azing, for the benefit of the kids I assume. Hope you thoroughly enjoy the wonderful news.  It's still a long way to go,  but this sure will make the load a lot lighter!

[Mikkimoe]

I love to wake to such great news - That really made my day!

I hope to say the same real soon - boy I had forgot Andiamo's #.of tx's. That is trully the most amazing thing I have ever heard. Me here winning about my 3 miserable weeks in.
Very humbling indeed.

I've always been a firm believer and teaher of such that all you have to do is want something bad enough and dreams do come true. Coming out of 2 death experiences in my life (bleed to death both times thus the transfusions) has really left me with a great appreciation for living each day as if it were my last and loving life to it's absolute fullest - You two seem to have that drive and it shows (The smiles on that bike and That boat are like mine on my horse)

Congratulations!

Mikki

[Trish77]

Wow...I went to bed early last night and woke up to this.  Thanks so much everyone for all the support.  To me, that is a key ingredient in success during tx .. things get tough, information gets confusing, questions come up .. and we are there for each other.

Andiamo tx'd 8 times.  I'm just out of Week 8 in ONE tx.  I'm not even in his ballpark .. but I sure like being able to share good news together.  :)

When someone tx's that many times and are on their way to SVR .. it eclipses alot of things about your own situation.  My hats off to all of you who have been in the trenches for so very long and I continue to hope for SVR for all of you.

Trish

[lmr28]

CONGRATS!!!!
So great to hear blessing abound!
XOXO
~lorraine