getting mad at doc

[lookupseeblue]

2 log drop,no sign of virus after 13 wks. doc stopped shot last wk and this wk still takin riba. his concern is my wbc is down to 17,ooo. he is hoping it will go back up on its own by not taking shot.i told him there are other ways to bring it up he said no , he said if they dont go up by next blood test there are alternatives. what do you guys think

[nyhepc]

thanks for the info. since i seem to need more than 1 neupogen a week, maybe they'll give me neulasta. it is truly amazing to me the amount of knowledge the people on this forum have. we should strike for dr's wages!!!!

[nyhepc]

oops. forget the rest. i have my labs drawn at work, make out my own lab slips, and take it directly to the lab myself.  then go back in the afternoon to get my results. already spoke to the lab about faxing results to new doc...no problem there. the new doc is about an hour south of me, in rearfangs' territory. the only problem i can forsee is if for some reason i'd end up in the ER here. seems to me PCP and GI should be able to communicate

[nyhepc]

i had heard before that neulasta might be used for platelets, that is a concern of mine.  when taken off tx, my platelets were 64.  a ways from critical but on a downward trend. PCR in Nov was 4 mil +. after all this time (1 month), wbc still at 2.5. am prepared for round 3...hope to impress on him that i need  neupogen x 2 and procrit every week. i certainly have the labs to back up my position. if he doesn't agree to that, would seriously reconsider doing tx at all.
warm wishes to all

[nolee]

Thanks! I'm in Central Texas. Finished up tx last Aug.21st (funny how one remembers such details when the phog goes away). Did a 6 month and 1 year PCR and am still SVR so I guess all of the **** I endured was indeed worth it. Jim you are correct about the Neupogen for WBC. I had a drop in both WBC and hemo. The doc thought that if the body can naturally bring these levels up it would be a better option (for me at least) to wait it out. It worked and I'm forever grateful for his advice and experience. Thanks for the correction as I wowuldn't want to steer anybody the wrong way.

[NYgirl]

LOL too many of us NY'ers in here is all it is....easy to understand.

I found it intersting information myself.... ;)

[FlGuy]

prev post should have been directed to nyhepc.  I'll blame it on the fog.

[FlGuy]

Hematologist told me that the difference between Neupogen and Neulasta was that Neulasta was the same stuff but pegylated which has the effect of a longer half life in your sys.  First they did Neupogen for 2 days in a row.  Couple of weeks later Neupogen for 3 days in a row.  For some reason the third time they switched to Neulasta for a one-time shot.  Said that they didn't recommend Neupogen continually so they went to the Neulasta for #3.  Both had the effect of upping WBC and ANC's fast.  They just decline to low levels in a couple weeks.

Doc treats WBC when ANC's hit 1000 which seems to be sooner than others here experience (500-750).  BTW, doc puts more focus on the ANC than the WBC itself.

To repeat: get WBC/ANC's fixed without reducing meds if at all possible.

[NYgirl]

You know that's a great idea and exactly what I have done.

I have printed information all ready to go in case of just about everything. That way when I approach the doctor with something he doesn't think I'm being some know it all and he can see the basis on something he might not be up on - and know it's a medical reality, not just something someone has told me.

That would be a good idea for you to do.

[friole]

Glad you have got that appointment next week.  Seems like I just read that the Neupogen is to stimulate the bone marrow to manufacture the white blood cells and the other is for platelets.  I have not read of that many people on the board needing the Neulasta.

I hope this new doc will be receptive to all the drugs that may be needed to get thru tx.  Now, this doc does not live close to you, right?  Are you going to try to have your labs done locally? I would ask for weekly CBC's for the first 2 months with the labs being sent directly to you as well as the doc. I can't remember if you ever had and PCR tests.  Did you?

Much luck, NY.  Keep us posted
Kathy

[rearfang]

Hey,
Good to hear from you. Let me know how you make out next week. Which doc are you seeing?
Lauren

[nyhepc]

i also was taken off tx for low WBC. doc would only give me 1 neupogen a week. since it only lasted me 3 days, it didn't help much. have appt with new doc next week. Is there a difference between neupogen and neulasta? trying to have all my ducks in a row this time around.

[jaroman]

I would get into another doctor tomorrow if at all possible.  
You can also print off some articles re. how to handle low WBC while on treatment-bring them with you.
Is it possible for this hematologist to help you out until you find another hepatologist?

[cuteus]

I was just reading an old thread of yours and wondering where you were!
congratulations again on that svr!

[jmjm530]

Procrit raises Hemoglobin, not WBC. Neupogen raises WBC. Lookupseeblue's issue appears to be with WBC.

I disagree strongly with your specialist's approach to reducing ribavirin before prescribing procrit. Ribavirn reduction, especially in the first 12 weeks of treatment is a negative predictor for clearing the virus. Fortunately, your ribavirin was lowered later in treatment and not by too much. All's well that ends well. Congratulations on being cured!

-- Jim

[jmjm530]

If possible see a new doctor this week with the intent to get back on treatment. Stopping medications at this point lower your chance of getting cured. Your WBC is higher than mine and I'm still treating. It's unfortunate that many doctors are not up to speed on newer treatment protocols.

-- Jim

[nolee]

My specialist indicated to me when I was on TX that the use of Procrit, etc. was only if my system could absolutely not bring the wbc's back up. He said he would back off the Riba not the shot if need be. I did indeed get pretty low on the wbc's after 4 1/2 months of tx and we lowered the Riba for 2 weeks by 1 pill per day. Magically the counts came up and I didn't need the Procrit. I am 13 months SVR and have had no problems since (with the exception of a few lingering sx's). His theory was that the best option (for me at least) was to let the body work things out because once you go the Procrit route, you need it throughout the remaining time you are on tx. Good luck

[cougareyes]

Honey is right 1.7wbc is not totally out of the norm. Absolute neutrophils need to be at least above 500, some docs say 750. If your neutrophils are listed as segmented(as in my blood test), you multiply your wbc by your seg neut. If this is the case I would get another opinion, see a hemotologist(sp?), and try to get back on your shot right away. Good Luck

[honey11]

Wow,,,,I hate to read that your dr had you stop your shot.  My dr always said,,,While on tx,,,if a dr stops you for whatever reason and does not intervene with procrit or neupogen,,,Then there is no going back.  You are back to square 1.  Your dr definitely is not handling your tx aggressive enough.  I hate to hear this and hope now,,,,you will find one that does.  If your WB count was 1.7,,,,That is definitely not uncommon at all on this tx.

[offshore54]

Sorry to hear about your problems with your doc.
I to get frustrated but with my family doc mostly.
My family doc had sent my for my regular bloddwork, A1C (im a diabetic), CBC, etc. and when she got the results, my RBC, WBC, Platelets were low. She had an assistant from her office call my to tell me i was to immediatley call a hemotologist and get an appt. I did.WHen he saw my file, lab work, and the paperwork i filled out in the waiting room, he came in to the room and said, "you are under treatment for HCV, correct?", i said yes. he chuckled and said, "Your fine. even though your counts are a little low, its what to be expected while on interferon an ribavirin". "Didnt you family doc know you are under treatment?"
I was Livid to say the least (at my family doc) for making me take yet another one of my few vacation days i have left to see a doctor that i didnt realy have to see. I guess its just something you have to deal with. But this site sure does offer alot of advice and/or opinions. Keep reading, chances are somone has gone through the same situation as you.

Cuteus, you asked me in a post a while back how my pcr was.
Well, I still dont know..heres why... Labcorp failed to draw blood for the PCR the day i went in. They did all of the other ones, but they missed that one. 10 days later, i am wondering about my results. Call my Doc. "Results did not show PCR." "You will have to be re-tested"
Then, went to hemotologist (above story)and i told him about the mess up, He said he would draw it. Got a call 5 days later, Labcorp spilled the blood. I have to go back and have them draw more blood.
So, THis morning i went back to Labcorp, had more blod drawn, and now have to wait another week.
I promise i will let you know as soon as somone actually runs the damn pcr and lets me know!!!

I should start a new thread!! getting mad at labcorp!!! lol

[FlGuy]

NYGirl is right.  You need to get on the Dr.'s case.  Neupogen and Neulasta act fast in bringing up WBC and ANCs.  It's no time to interrupt treatment.  Although both are expensive they are worth it in that you avoid the low WBC risks (infection) and you keep both the peg and riba going in your system.  You have come too far to have this sort of barrier in your way.  Both drugs have websites so you can find out more. I've had both.  No sides from Neupogen (that I could tell), Neulasta gives bone pain /backache for a couple of days.  But, if you've been thru 12 weeks these are a walk in the park.  CBC's a few days later were remarkable.

[NYgirl]

Boy I boy if I was you I'd be more like Look up see RED cause I'd want to pop that guy one!

I don't know very much but just wanted to say...best of luck with this situation.

Before starting tx I asked my doctor (at the advice of in here) if I would be able to to Neupogen and Procrit and was told definitely.

I guess it goes to show how important those questions really are!