new doc tomorrow am!

[lmr28]

I have an appointment with a new specialist tomorrow!  I feel really good about it.  There is an entire team of hepatologists!!!
However, I am feeling unprepared. Prepared to begin tx, having researched and read posts for weeks.  Still, I do not know what new questions to ask.  I requested records and all my test results, but do not have them yet.  Here is what I know:
VL: 5,871,880
geno3
Bx: stage 1/grade 1
AST: 174
ALT: 208
GGTP: 98

I know I am in pretty good shape, considering. Yet, I have been sick, exhausted, and fatigued since mid-summer.  Stomach issues, as well.  I just want to get this going and battle this beast. What else do I need to ask this doc?  I still have that "bad dream" feeling, like this is not REALLY happening.  Surreal, unreal.

Any suggestions before tomorrow am will help!
You have all been so supportive & helpful!!!
~l.

[sfbaygirl]

Geez, Iremember joking with people here about how we looked on tx. My hair went sticking out, usually curly. My face went pasty white, after I got anemia at week 3 and I felt like a figure out of that movie....brain fog....not Halloween, but the one with dead people that lived in the attic.  LOL  Anyway, it is good to make fun of ourselves with each other. If we can't laugh, we would cry!  

good luck you two!  Can't wait to hear the descriptions of yourselves on tx!  

Linda

[pKinCA]

Hi !

Yes, I have the pre-filled syringes.  Are you taking Pegasys or Peg-Intron (sp?)?  I think Peg-Intron comes in the redi-pen (you just shove it against your skin and it injects) and Pegasys comes in pre-filled syringes or vial that you draw up yourself...

So far so good for the sx -- nothing major at all (so far anyway... am keeping fingers crossed...)  A few aches and pains, a few pains near liver area too -- take one tylenol and aches go away pretty quickly.  Haven't had the pain in liver for a few days... A little dizzy here and there, a little winded... My hair has turned stick straight :-)  Usually a thick mop that I have to wrestle with... kind of a nice change!  I am gonna color and take my chances... It's bad enough to have to go through this and potentially lose hair, I'll be d*mned if it's gonna be gray too!!!  :-)

I was nervous getting blood drawn (for the first time ever!) because I wished they'd used the other arm instead of the one from my blood draw a few weeks ago.  I kept imagining them poking a big ol' hole in the same vein :-)  Next time I'm having them use the other arm so my imagination can take a break!!  :-)

2nd shot was fine too -- a tad more nervous than I thought I'd be, but again zero pain during injection and afterward...  Get more nervous after the meds are inside because I'm still bracing for the worst, but it hasn't happened as yet...  I decided to just lay down in bed right afterward to calm me down... worked like a charm :-)  Slept like a baby last night too...

Oh yeah, I take the riba between 9 and 10 am & pm...

Feel free to ask anything else...  I understand the pre-tx anxiety.  Mine was way worse the few weeks before!  I am actually pretty calm these days... You don't know it yet, but you'll be fine!!!  Really!!!

[Trish77]

Regarding your PCR at week 4.. on regular SOC, I'll be getting a PCR at week 4 but it will be a qualitative one that will tell me if I'm above or below 50IU/ml.  I want a quantitative one instead that will tell me exactly what my viral load is and how much it has dropped if it's ABOVE that 50IU/ml.  While there are different schools of thought on that, you should at least ask if your PCR is quantitative or qualititative.  IF qualitative, ask what the sensitivity is.  That will tell the the limits down to which it will test.  And, frankly, I would insist on a quantitative PCR at Week 4.  I hope this isn't too confusing.  If yes, just ask and explanations will come from various quarters I'm sure. :)

Trish

[lmr28]

Oh!  I forgot to answer that one, but I did ask it!!!  YES, weight based Riba, and they are cap's, too.  
I did not remember to ask about the PCR, but will when I go in for my "training".  I will just insist!  I know we planned bloodwork for 4 wks, but I will be sure that is included!!!!
I just wrote it down.  I do know we talked about looking for UND @ 4wks.  
THANKS!!!
~l.

[sfbaygirl]

Okay, yes it is a lot to talk about. My concern is still are you on weight based Riba or not?

Will you get a 4 week PCR? NEEDED.  

Looks like you got the sleep meds taken care of?  Important

CBC's you asked about....this is good, once a week. Get copies from the lab.  

Great about the rescue drugs!  

Okay,  great job! the only thing I am concerned about is the Riba as weight based and the PCR at week 4. These are really important!  A UND at week 4 predicts if you will clear this virus....The Riba at weight based rather than the 800mg that is usually given to G3's is also important.  Did you ask about these?  We want you to SVR and knowing these things will give you a better chance.

Another thing that is important is to know the sensitivity of the PCR. Does it go to <50 or <615?  These are huge differences in knowing how much virus can be left......

I know this is alot to take in, but what I am asking is more about you getting SVR and what your dr. is concerned with as far as PCR's, CBC's and sensitivity of tests.....

As a newbie it is hard to wrap your head around, but as you keep learning you will understand...

Good job at your appt.

Linda

[lmr28]

Did you get the pre-filled syringes?  I forgot to ask today!!!  
I am actually more concerned that the med's will FREEZE as we have over a foot of snow outside right now!
So glad to hear that it was such a smooth process getting the med's to you!!!
(I must try the veggie bin, as well!  none of my kids EVER go near it!!!!)
How are sx so far???
What times are you taking the riba?
Be sure to let me know how the blood draw goes!!!
~l.

[pKinCA]

Wow!!  Excellent news that you found a good team - I'm really relieved and happy for you...

Regarding the delivery of the meds... Here's how my experience went down, fyi...

1)  Mailed in the Rx

2)  Called pharmacy a few days later to confirm receipt of the Rx.  They gave me delivery date (which was 2 days from this date) and asked if I wanted to have it delivered via FedEx with "Signature Required" -- I said no signature needed.  (I have a signature waiver on file with FedEx too...)

3)  Date of delivery -- came home to find a very nice package of styrofoam and ice packs with syringes inside.  They were very cold...

4)  Took out needles and alcohol swabs and put them in my bathroom where I will inject, then HID the syringes in back of the veggie bin :-)

Tonight is my 2nd shot -- wish me luck!  :-)  It's also my first day to have blood drawn... so off to the lab...

Again, I really really happy you are in good hands -- makes all the difference in the world!!

pK

[lmr28]

Thanks so MUCH!
Went this morning and had an excellent experience.  Great team!  OK, let me see what I can respond to...
pKinCA- Wow!  I think you went to the same gastro office that I started at!!!!  (well, except that you live clear across the country. lol)
Let's see-
gallbladder was removed in 1992, so no worries there.
hair color- did not actually ask.  (sorry!  I read this AFTER my appointment)  I have heard from others that it is a REALLY bad idea...  weird colors emerge and it can also inhibit re-growth after tx.
CBC weekly for first 4 weeks, then tbd.
Neupogen or EPO for rescue drugs.
sleep/pain med's as needed.
I am on effexor xr (75mg) for anxiety disorder & xanax (.25mg), as well, as needed. This can continue and is fine.
Acetaminophen is fine, but ONLY 20 grams = 4 tablets, reg. strength in 24 hours!!!!
Yes, on extending to 48 wks if not UND @ 12.
They did MORE blood work (hard to believe there is any left to be affected by this damn disease!) to check for thyroid and co-existing liver diseases and to establish baseline info in all areas.
They also plan to get my actual screens from the biopsy so that their pathologist can look at them and confirm stage/grade.
No eye exam ordered.  I'll check back on that one with the nurse.  They gave me variety of numbers to call with questions!!!
There does need to be a fairly strict schedule for the peg.  It seems a bit less so for riba.  2 x day, but it did not seem to need to be the EXACT same time each day, just in the general area.  I would say an hour or so, either way would be fine.  (I will double check that. I was beginning to fade by the time I got to that question!)
They will train me at the hospital and watch me do the first shot.  (ICK!)

So now I am waiting for my insurance co. to approve the drug cocktail.  Then they will send them.  I guess it must come from a special pharmacy???  I must be home to sign for it and then refrigerate it...  Not sure how that will work.  Will they tell me exactly when they will be delivered or do I have to take a day off????  I THINK I will take my first shot on the 26th.  IF I get the med's in time.

whew.  That is it for now.  My head is spinning.  It is just so much to take in at once.
Again, thanks for all the advice!!!

medicmommy-  it looks like we are in this together!!!  almost the same day!

(((((((((((((((( hugs to all )))))))))))))))
~l.

[nygirl7]

Remember to bring a little note pad with you so you can write down all the answers - once doctors get going in their doctor talk it gets hard to remember it sometimes because we are stressed and nervous...I found that it helped me TREMENDOUSLY when I was able to refer back to my notes instead of just use my poor tired old brain!

Good luck!

PKINCA
You really don't want to bleach your hair at all - color though would be a different thing.  Believe me, I lost 75% of my hair on treatment and what was left was so dry and broken it was just horrendous. Plus your skin will definitely not be able to handle the bleach touching it. Also I know we are supposed to stay away from strong chemical odors as well like gasoline and stuff.........so you'd have to be leary of that.

I am not just one year post tx and about to get my hair streaked again for the first time. finally. It took so long to grow back to a decent enough length I didn't want to chance it frying!

PS The doctor should also be ordering an eye exam at the opthamologists - mucho important!  I didn't know and it held me up a few weeks because he forgot that one part!  So I'd ask that just to remind him so you don't have to get hung up like I did.      

Good luck guys.

[Deb_c430]

Wow great questions!  You huys are good!

they may have you do a colonoscopy and a endoscopy also. Neither now that bad.  

I think other drug interactions is a really good question,  I would also check with a pharmisicist.

Good luck! do let us know

[medicmommy]

Hello fellow pre-txer!
In addition to all the lab tests, my doc is having me do a cardiac study...I am only 43 yrs old, and have had no heart problems but, they want to establish a baseline...If nothing else, it'll be there for years in the future if I ever have changes in that area...Jeeze...I think I've had everything except my b**thole tested since last summer! -And I'm not giving anyone ideas!LOL...Oh, many people have gallbladder troubles during tx...If you haven't, get your gb checked...Mine was causing me a lot of GI problems and elevated liver enzymes, and I didn't know it was the problem...I ended up getting it removed a few months ago..and guess what? Lowered to normal liver labs! Keep posting! What is your 1st shot date again? Mine is Feb 25...

[pKinCA]

Hi!  It's been a while since we've communicated!  So glad that you found a good team -- I hope you like them tomorrow!!  I myself did not like the first gastro I saw, the one who diagnosed me... didn't even tell me not to drink after the diagnosis!!  Of course, I knew I couldn't, but that's just an example of how lame he was... His office had the nerve to charge me $35 to copy 10 pieces of paper from my chart!!  And to add salt to the wounds, the staff didn't even have the decency to put the pages facing the right way when they stapled it -- some were upside down, some facing the wrong way... Geez, $3.50 a page doesn't buy much nowadays :-)

I thought of a few additonal questions... not too important, but they might be helpful...

1)  Can you color your hair?  (All right, I'm slipping that one in for me as I didn't want to ask my doctor :-))

2)  Should ribavirin be taken on any schedule?  If yes, when?

3)  Ask about taking Tylenol for aches and pains... If ok, how much per day is the limit?

4)  Ask about interactions with any other meds you might be taking currently...

5)  My doctor had me do blood tests for liver functions, thyroid, platelet counts, etc. the week  before I started tx so that we had baseline information from which to monitor me.  Ask if they will do likewise...

6)  Can they copy for you or FAX to you all labwork results that you'll have done while on tx?

7)  How will you learn to administer your injections?

8)  When is your first appt. to see them after starting treatment?  

I think that's it!  Good luck!!  Report back tomorrow on how it went... Keeping my fingers crossed that they are smart and caring!!  

[lmr28]

Thanks so much!  I just feel so much better armed with good questions in written form.  Makes me feel like I do have some control, after all.
(speedy, too!!!!)
~l.

[sfbaygirl]

I know you need a whole thread about what guestions to ask.  Let's see as a geno 3, I would definately ask if he believes in weight based Riba or the 800mg as SOC. (I would question why if he says NOT weight based, if he does.  

I would ask how often he will do PCR's. Will he do a 4 week PCR and if UND, will you go 24 weeks, if not UND by week 12 what will he do?  

I would ask for a standing order for a CBC, so you can check to see if your HGB and WBC are high enough. I would ask for one for at least once a week, then if you need to you can go once a week. When the Riba hits and your HGB goes down, you will want to know, usually around week 3 or so.  

How about rescue drugs? What will he give you if your HGB or WBC are down, will he give an rx for procrit and/or Neupogen?  

If you don't get UND at week 12, will he let you extend to possibly 48 weeks, as a Geno 3.  If not, why?

Don't know if I would bring up pain or sleeping yet, but you may want to ask if he will give you something, if needed. Neupogen gives so much pain to some...you may want an RX.  

Stomach may be a problem,  what does he recommend.

Okay, I may be getting ahead of myself here!  But the top ones are important to know!!  

Linda