I've had a few updates and could use some feedback

[Mikkimoe]

Hi Forseegood, deb, sfbay, lindavalu and fellow socialites,

I've had my sis visiting (from SFbay area) this week so have been off line, sorry - looks like I missed some interestng chats.

I had a good week - saw my new rock-star doc at UCI (I was on a 3 month wait list but wormed my way in early). He gave me a good prognosis. My VL is pretty low 58,800 and vitals are good. (although I'm still waiting on the results form the 11 viles of blood he had drawn) They are going to give me a liver scan (hope it's the same thing I've heard about from a few of you) and he also wants to read my biopsy personally. I need to get cleared by the cardiologist and hope to start the tx next month.
He said as a 2B that I may be able to stop tx at 12 weeks if all goes well early on. I have not heard about this early stop time - have any of you? . (Maybe because I'm early stage - although he is questioning that, thus wants the scan and personal biopsy read). He also said I could stay on my Enbrel - YIPPI (The bio for the  RA). But figured I'd experience exagerated RA pain thru out tx.

My ALT and AST have dropped alot in the last month from 4xnormal for the past 5 months to 2x (69/98)

The sleep thing is always a battle for me as well - usually up till 12-1....even after taking my sleeping meds, and always wake before 6. And this is pre-tx. Is this normal?  But all in all I feel much better now then I did after the biopsy - just weak and tiered.

Still concerned with the heart palpatations and chest pain - is this normal? Also have IBS which may be effecting the heart rates. BP is low 60/101 and HR is 61 - so no hypertension.

Thanks for listening, looking forward to your words of wisdom.

I keep you all in my prayers and hope your all doing well,

Mikkimoe


  

[Mikkimoe]

Please tell me it aint so! I almost crocked during my last endo - I Hate those things. Mostly hate the fasting part...I'm a grazer and constantly thirsty..UGH

I think he wants me to start tx on my next visit the end of March - All my tests  will be complete (liver/spleen scan - stress test - mamogram etc) - no word of the endo yet....maybe I will email him. It's so cool - he actually responds to my emails the same night of the day that I write him- wow)  and he has some class I need to attend a well.

The cardio is tomorrow - funny you discribe my symptoms pretty well - I can hear my heart beating too. I'll let you know how it goes.

Thanks everyone for your feedback - this is a pretty cool site. I got alot of feedback on the ***************** site as well.

[Deb_c430]

As long as he doesn't wear platforms and  kiss make up!  You aren't lying about their pockets filled with gold lol!

I was reading on a british forum the yesterday, they were also talking about this, they were saying sometimes it is a bile duct clogged or gall stone.(gall bladder again)

You also have low blood pressure, is like when you take a hot tub,  you get out and you feel light headed and can feel your heart beating?  That is blood pressure coming up.

Sometimes I can hear it beating in my ears. Freaks me out.  

So glad you have an apt, keep us posted.

I am waiting for PCR results, oh joy oh joy!   But I am way groovy other than that, if I forget all the aches and pains,  usual  sx, OH ok....  I am crappy! Kidding!

Have you gotten a date to start tx yet?  Here is some good news, at the last minute they may hit you with a colonoscopy and endoscopy.  neither so bad, except day before colonoscopy, but be prepared!  

Talk to you soon!  

Deb u tante!

[FloridaMouse]

Just wanted to let you know that I will do shot #10 of 72 tonight.  This is my second attempt at treatment.

I also take a biologic for my RA (Humira).  I was seen at Shands at the University of Florida by the same doc Lady Lauri sees.  He told me that there are reports surfacing that the biologics may actually enhance the positive effects of interferon.   I thought that was a bit of encouraging news and wanted to share that with you.

Mouse

[Lady Lauri]

Aww geeezzz! Sorry Mikkimoe, that was really the wrong 'place' to post that!

REMEMBER.......all handle it different AND I'm in a trial, no rescue drugs allowed for hgb, wbc's, to help me thru it, etc. I get a buzz on HALF a Lortab...what's that tell you on my tolerence level,lol!?

In reality, this is how it can be and , in reality, it can NOT be this way also.
You'll fare better, I'm just one of few that didn't.

LL

[Lady Lauri]

Dr. said to! To get me 'thru' the 3 more shots and wants interferon in me a bit longer.
2b also, UND week 4.  Sides worse, now reds, glucose really low, etc. Honestly, without all the long, drawn out stuff, I wasn't going to do 3-4 more weeks, tho , as is his job, he adjusted, discussed, reviewed and decided this is best to try.
I don't post my 'odd' tx a lot as don't want others thinking to do the same, I have had to reduce twice already, etc. to get thru it. He said he would never treat me for 48 weeks.
God forbid....this doesn't work, I'll have to wait for triple therapy, 8-12 weeks for 2b.
  I put on a good 'face', don't whine as others go thru so much worse, but this tx is killing me! The very few days I am up, it's with a pain pill (and tho in bad pain near all day, I only allow 2 a day of those!) or sheer dragging myself,  and when I ride a bit....it's VERY stupid but saving my sanity. Almost dropped it at a light! It's parked for a few weeks!
Me and drugs never did mix well, ANY drugs, low tolerence, etc. , guess that's just applied here also.
  Hoping for the best, I do know I have pulled every bit of strength, emotional and physical to do just these weeks :{

LL

[sfbaygirl]

Oh I am bad posting, I have too much work to do. Why are you going to stop Riba early. I don't like this idea either!  My opinion of course, but why?

[Lady Lauri]

2nd study :  In conclusion, the authors wrote, "16-week[s] and 24-week[s] of peginterferon with ribavirin at a dose of 1000-1200 mg/day provided equal efficacy in HCV [genotype 2] patients who achieved a RVR at 4 weeks."

The 2nd study I see this problem, the SOC for geno 2's is 800mg,Riba as per 'us' stopping early.


They do look promising and I think the bottom line to Geno 2's (not 3's necessarily as 2's 'easier' to cure) stopping early is it IS a gamble and a less % of SVR, at this point of the SOC we are doing.

I am hopeful even making it to week 24 , (stopping Riba 3 weeks early), and still worried.
If I can find them....I'll post the studies on even reducing with Geno 2's is considered safe, the same SVR , but doing 24 weeks I believe.

Also, bear in mind that some Dr.'s feel we should do 48! Always a gamble in this, hard choices.

LL

[sfbaygirl]

Hey!  I sure wouldn't trust going on a 12 week tx. These are just too new. Maybe with new tx's and PI's, I would say yes. You only want to do tx once, believe me! I relapsed b/c I couldn't continue on extended tx. Do the time, it is worth it, at least at the moment. I sure wouldn't trust doing less....

Glad to hear you have a rock star doc...it makes a big difference in your tx...hopefully they think outta the box...Alinia, double dosing at first etc...but I still don't agree with less time!  Call me an ol' timer, but that's how I feel. Having read lot's of studies and my gut telling me this is not okay. lol Anyway...please ask away...lot's of the experts around here will give you there opinions!

Linda

[pKinCA]

I too am Genotype 2b and have found several articles on shorter duration treatment.  (I'll include a few links after this text...)  I showed these to my gastro and he said that in the past, studies done in Europe tended to be not so reliable.  He encouraged me to do the full 24 weeks saying that until it's standard protocol he would not want to stop treatment earlier than that.  He said that if, god forbid, I did not have SVR after stopping at 12, 14 or 16 weeks, then it might make the next go around of treatment more difficult.  Right now I'm signed up for 24 weeks... I hope I can make it!!  Good luck to you!

PS  Would you mind sharing the name of your doctor at UCI?  I might want to consult with him regarding length of treatment...  Thanks!

http://www.hivandhepatitis.com/2007icr/easl/docs/042007_b.html

http://www.hivandhepatitis.com/hep_c/news/2006/092906_a.html

[Lady Lauri]

He said as a 2B that I may be able to stop tx at 12 weeks if all goes well early on......

I am TOTALLY falling asleep and MUST go to bed, but had to reply, more tomorrow (remind me, will ya',lol!)

I do not suggest that! Believe me, I thought it , wanted to, at week 12, at 16, at 18 and here I am with 3 shots left as I PUSHED on, and it has hurt to do so......but not week 12! As 2b's, we have more 'options' like that, but still feel best to push forward as far as possible. Even better to reduce and do more weeks, as I did.
Maybe with the low VL considering week 16 is a maybe, if tx too hard on you, but I am not too convinced/pro on the 12 week stopping.

......Still concerned with the heart palpatations and chest pain - is this normal? ........
I have these a lot right now, every day, from tx. You haven't started yet, check that out.
Back in AM...when awake :}

LL

[Mikkimoe]

Yes his pockets are glittering with gold - lol
The gall bladder thing sounds interesting. Good news is I see the cardio doc wed. I have never done the stress test but nave had anxiety and SVT and MVP in the past. This seems different though - very heavy sensation - I can hear it beating. It gets better if I sit up - so it makes it hard to get to sleep. Weird huh...but that's my life story it seems. A slue of crazy things that docs can never explain

How are you doing?

[Deb_c430]

Ps your prognoses sounds excellent!  I want a rock star doctor!  Does he glitter?

[Deb_c430]

Hey there!

Was thinking about you the other day and how you were doing!

I hope you had a great visit with your sister!  I have company coming in Feb.   Husbands family, oh joy! lol!

Yes, there has been some intersting dialogues going on. Lot's to learn on here, if you have an open mind and keep things in perspective.

Ok, to your heart, have you gone and done a stress test?  Have you always had palpitalations?  My Mom, always had them also,  But hers came from Rheumatic Fever when she was a child.

Do you suffer from anxiety?  Have you had your gall bladder checked?  

I had this happen to me also, pre accident, then it came again when I was in hsopital, I told them and they did all the tests. Still don't know exactly what it was.  But they felt it was the change in liver levels.  Gall bladder went over active for awhile from them.

Your going through a lot now, preparing to to start treatment, and it is so frightening,  The whole concept of this nasty virus!  

Let your GI or Heptologist know, and ask for some tests.  

Your blood pressure and HR are excellent.   I wouldn't panic, but I would go and get some answers, before you start tx.

Not sleeping is something a lot of people have gone through, I do sometimes.   Tx unfortunately make it worse!

Again, hang in there and stay positive,  ask a million questions, not just here but to your GI, PMC.

Keep in contact,  and know your in my prayers also!

Deb (lol I want to write so bad,  ok I will.  deb u tante!