Help! Stop treatment?

[Krisso]

My latest blood test showed my WBC at 1.16.  My doctor's nurse called today and told me he wanted me to skip my next dose of Pegasys.  My WBC has been low in the past, but has held steady.  I am 1a, 47 weeks into Tx - clear at 18 weeks, with a drop from over 6 million to 200 in first 12 weeks.  I have no trust for this GE - confronted him yesterday about his plan to have me stop treatment at 58 weeks instead of 72.  He said it was the insurance company's fault, but found out they had okayed me for the full 72 weeks.

So now he's doing something else that is questionable.  He has been negative about my success from Day 1, and has tried to encourage me to stop twice before - never believed I would clear, etc.  I don't want to risk my results if I don't have to!   My question to you all (since I can't get my doc on the line): is there a reason why he wouldn't just put me on Neupogen, instead of making me skip a treatment?  SHould I get a second opinion at this point?

I appreciate any of your thoughts.  I am so worried, and am having wretched Sx, too.  Any help would be wonderful.

Thanks,
Kristi

[gauf]

Did your WBC drop out all of a sudden? Because with numbers that low, I wonder if your previous labs showed a downward progression!?  You absolutely should be prescribed Nuepogen! And if the Doc noticed those whites dropping and did not prescribe it (assuming you have no other issues) then that Doc is totally incompetent and I would dump him asap! It may be too late now NOT to stop the peg as 1.16 is very low, but you need the nuep in any case. A good doc will get you on it immediatly and it works fast, so you possibly could just reduce the peg to 90 or 135. Good Luck.

[Rockerforlife]

What proof does he have you wont clear?...does he have stats to back up his statement,does this mean you have to undected by 12 weeks  to  have a chance at SVR?..this is what the doc is thinking?

[Deb_c430]

Is that WBCs or absolute neuts?  

I agree with gauf,  Many Gi's let them go so low,  mine have been way, way  down!  Many oncologist and hepatologists will let them go very low.  

Advocate for yourself, either  tell him you prefer a low course of neupogen, and  in the mean time find another Doc.   You are intitled to a second opinion.  

I did that this time, we moved, I did not like new GI so asked to be refered to another, he is aok, so stayed with him.  

[rita863]

ditto with what deb said.. my doctor wanted to stop every time i had a different side effect.   finally i went to a teaching hopital and saw a hepatolgist for a second opinion and he said "Do not stop tx) the safety meds can get you though if you need.

I went back to my first doctor and he had the letter from the specialist and had a whole new attitude.   I flat out said, I will not stop tx i have gone to far and gone through too much, so if you dont want to work with me, i will just go back to the specialist.  i also i will not reduce riba any lower then 800 mg, (he wanted to reduce it again to 600) i refused.  he has been very pleasant now that he knows i am in this for the long haul with or without him, there a plently of doctors out there that would tx.

Good luck

peace
rita

[Krisso]

Thanks, everyone, for all of your help.  Don't know what I would do if I couldn't come and hang out here and learn, and be reminded that I'm not alone going through this.  Sorry to be so slow in my response.  Wicked Sx yesterday put me in bed very early.

You all have reinforced my opinion that it's time for a second opinion.  My WBC numbers had been low for awhile.  In May, they were 1.56 and in March, 1.94.  I requested Neupogen another time when he tried to skip a dose, but he wouldn't go that route

As I'm sure many of you know, if you haven't cleared the virus by 12 weeks, but have by 24, and have a > than 2 log drop in the first 12 weeks, your chances of SVR are decreased, but NOT impossible.  In fact, thanks to Jim, I've been doing lots of research, and doing the full 72 weeks should significantly improve my odds.  I haven't been able to find any hepatologistsin Arkansas, so my choices for a new MD include a couple other GI's or an infectious disease specialist.  Any pointers from y'all about choosing a new Dr?

[Deb_c430]

If your near Shreveport there is a great Doc named Brannon.  He was my first GI. Loved him!

I would also look up in teaching hospitals, say Dallas, or Shreveport. Not sure how far you are from them.

The most important thing I have learned in this journey, is to not take no for answer, your not a number or an insurance entitlement,    

Like Rita I have noticed if you speak up, they treat you differently. You need someone who will work with you.    If he won't.... move on.

if you do not feel comfortable with him he isn't for you.

[lalapple]

i know it is important for one to listen to and be able to trust one's doc esp when one is on tx.  i don't like how your doc is so discouraging.  i'm not a doc and cannot tell you what to do but to my understanding, WBC doesn't determine your ability to contract infections as much as your ANC (neutrophil count).  Although your WBC is slightly low, do you know what your ANC is?  My doctor took a very strict attitude towards my tx when my ANC dropped to 0.7 and put me on Neupogen right away without cutting my dose or making me skip a dose.

Neupogen has been helped me keep my tx on full dose.  i sometimes get a slight fever and throat pain from Neupogen.  

you should consult your doc about Neupogen,

good luck!

[jmjm530]

You've been given some very good advice here. Many of us have had low WBC but didn't have to miss a Peg injection. As "lalapple" states, the important number is your ANC value which is a WBC fraction and should be on a complete blood count. By all means seek out a second professional opinion if you have reservations with your doctor. BTW not every doctor thinks you need Neupogen even with low ANC. Mine dropped to 320 and I stayed full dose Peg without Neupogen. A good liver specialist will guide you here.

[Krisso]

Hmmm... I have my labs here before me, and all I can find that resembles what you mentioned are GRAN # ANC (AUTO).  I don't  have the latest (DR called with WBC results), but the one taken in May showed 1.73.  That doesn't seem low at all, especially compared to .32 or .7     I'll try and find out on Monday what the ANC is, when I try and book a second opinion.  

Thanks, jmjm, lalapple, Deb, and all!