Blood Work,,, Advice TnHepGuy, All

[honey1616]

Hi,,,I didn't want to start a new thread but for some reason I couldn't post a comment on existing thread???  Anyways,,,Just got back from Dr and I'm really upset.  My bloodwork was all acceptable but my hubby's neutrophils dropped to .....0.6.  Dr said he is to stop treatment totally today.  That it is so low at this point that it is dangerous.  Funny thing is,,,he has been doing so good and not having problems so this was such a shock to us both.

I asked about neuopogen and Dr said at this point he would need to stop and redo bloodwork next week. I even tried to get a prescription saying it might take awhile to get filled if pharmacy had to order so I would not be leaving that office without prescription in hand!  Dr. Said  We will see after next week and I'm not familiar with it and will have to do some research by weight etc... I tried to argue saying there was several people that continued with this and we could even do bloodwork in 3 days to monitor.  Then he says,,,Ms,,Your husband could die if this gets lower,,,So Drop it!  Anyways,,I guess I'm really upset because I'm scared if he stops totally,,,that is 6 months down the drain of hard work!  What happens if you stop say for a week or 2,,,,would you all think?  Ending on a positive note,,,,6 months pcr for him,,,,undectable!

[fsplink]

Oh great! I go to have my colonsotopy (spelling?) tomorrow with Dr. Rheindollar! I better have some jokes ready! Of course, considering the procedure it should be easy to come up with some.

Honey,
I'm so sorry to hear about the trouble you're having. I will pray that everything works out.

[Amerabrit]

Honey, if your hubby wants to stay on tx can't you give him one of your shots (order your next rx a little early and eventually you will catch up)  Is that too simple an answer?

[Indiana]

WOW.....we go from a Doc who is unfamiliar with the drugs and proceedures necessary to his patients disease....to one that is VERY competent, commands the love and respect of his peers, and actually had a "bedside manner"! And all in the same post! What a stark comparison when we see it side by side.
To see that he took 3 samples speaks to his competence at this. Many times that is a problem in that they worry about the "sample location" not being indicative of the total picture. To see that he took 3 speaks volumes to me. And his demeanor is something that is just plain wonderful.  I am glad to see you in such good hands this time around Cindee. I will try to find some funny stuff that you can pull to get him back for the jokes...

Honey.....I hate to say it but your doc is an idiot! I know the feeling.....My Doc was an idiot too when it comes to Hcv and being aggressive. Thats why once I realized this I made an appointment with a more competent doc over in the "Big City" for a second opinion. Both knew of the other in my tx and I think it kept both of them on their toes. I visited the second opinion doc for consultations every 3 months or so. At the very least, you need another doc to consult with who is more up to date on things.
My Peg dose was cut late in my tx for low white counts but only by 1/4 for just 2 weeks. My counts came right back up and stayed up for the rest of my tx. Cutting that Peg dose does normally work well and pretty fast too. If you decide to do this, request a CBC at 2 weeks after to see where he is with the counts. I would continue to get one every 2 weeks until this problem is over. Once they come back up I bet he will be fine.

Best of luck to both of you............

[cindee]

Honey....first of all I want to say I am so sorry to hare that news of your hubby's. I have already said a prayer, and I WILL CONTINUE to do so. I was praying today, and the phone rang, just as I had finished my prayers....I always cry when I am pouring out my heart to GOD. It was one of my best friends...he said are you alright? I said yes...I had just been praying for all my "sick" friends, and with all the family problems....just had talked to my sister, and her son..is on crack! He called home for his wife to come pick him up.Seems he was @ some get this...r/r tracks...waiting for a train....he was going to commit suicide!!!! And he's been doing good. He had a "weak" moment and went to a crack house and smoked!!!! So please pray for him too. I love ya girl, very much and tell your husband...he knows me!!!! I have and will pray for him very often. Please keep us informed....I'm sure this is just a set-back. God will speed!!!! Much Love and MANNY MANNY Prayers to you both, Cindee

Everyone....and Honey if I just didn't pick a place to let ya'll know about my bx. I'm gonna keep it short. And CURRU I apologize for NOT asking about our numbness, but read on!
My new "Dr.Wonderful" is .....now I know for sure....clinically INSANE!!!!! LOL Honey I know you remember about me getting lipstick on his white coat, when I started to leave my office visit on May21st. He was gonna shake my hand and I said NO WAY! You're getting a kiss from me! And that's when I got lipstick on his coat. Well Tues. I was laying in the hospital....and he came into the surgery room. The nurses started "flipping out"..they were almost hollaring...Dr.Reindollar!!!!!!! We're so glad it's YOU here today!!!! Well we all started in with jokes. I told him my Mother saw a doctor and when the visit was finished she turned to the doctor and said"I want a second oppion....and he looked @ her, and said..."You're UGLLY TOO!!!!" Well, we all started laughing. He said he has a patient who he's had a time keeping off of alcohol...and he said he ran into his wife. He asked wife how husband was doing...w/ the drinking....seems that his wife is a "lush" and it's hard for hubby NOT to drink w/ her around. Well wife told my Dr. that she had been to the Radison for "happy hour"....hubby was outta town. She said she was having a big time and drinking and all, when she spotted a very handsome man across the bar. She said he looked very wealthy. And they started talking...she told him....You look like my second husband! The man said, oh really...how many times have you been married???? She said "ONCE"!!!! LOL So see how it's gonna be w/ my "crazy" doctor. He is a hoot!!!!! When he started to push on my liver area where it had been marked in ultra-sound...I jumped...I told him...it's Not sore, I'm just tickleish. Well did I say that WRONG thing...we had been talking about the lipstick and the nurses were all laughing. Well can you believe he just stopped pushing on my liver w/ his thumb and took all his fingers and TICKLED the pee out of me!!!! I told him...Dr. Riendollar, stop!!!!!! You are making me pee my pants....he said...laughing all the while..I'm just getting you back for the lipstick, and telling all the nurses!!!! But then he did my bx. he did 3 sticks...and he let me look at them, he said they "looked" very healthy...they looked like 3 little pink worms to me. So I can't wait to go to see him on the 23rd. I'm gonna tell him...dang, I don't have Hep C....it's been worms the whole time!!!!! I wish you could hear him laugh. I know everybody heard all of us!!!! And when he got thru...he looked right down in my face and said...so seriously.....I'm glad I didn't go where you had been marked...I said really??? He said yes...I would have KILLED YOU!!!!! Then he started laughing and laughing! So I've got to get him back!!!!! I am so thankful God sent me to him!!! He has made my disease easier to live w/. Well gotta run...hubby's alarm went off and he's gonna take computer to work!. I love ya all, Cindee

[fonzz]

Those are great articles you posted TnHepCGuy. I have a link that
does a fair laymans' explanation of ANC's. Honeys' doc ought to read up before he starts cutting doses IMO.
BTW everyone, I'm the guy who had the ANC's of 225- I stayed at full dose, and I'm clear post 10 months.

Here you go:

<a href="http://www.curehodgkins.com/hodgkins_resources/determineANC.html"> Explanation of Your ANC's </a>

fonzz

http://www.curehodgkins.com/hodgkins_resources/determineANC.html

[Showboat]

Honey:  Sorry to hear that you two have this added stress to deal with.  I am impressed with your determination.  It is a shame when a Doctor will make his/her patient(s) feel insignificant and sometimes stupid. It just burns me up when I hear that he is ignoring your information and thoughts. I took care of my Mother for years, and had to fire her doc because he was a jerk....I do hope that you two get everything worked out soon.  Wow...we really have very knowledgeable people here with fantastic advise.......really great advise.  Good luck to you and hubby....sending prayers..Peace and Love..

Foreign Boy::: Good to hear from you.  Hope you are doing well.  You sure have had some rocky roads to travel.  I cannot imagine how scarey it was to lose your hearing.  When you posted that information before, it really haunted me.  It haunted me so deeply that  I had a nightmare and in this nightmare, I experienced that hearing loss. It was horrific in the dream and to think you actually lived with this experience!!!!!!!!!! How brave of you to go through all of that and still have such a great attitude.  I am so glad your hearing is back to normal....Take care, and Peace to you.

[Amerabrit]

I don't know the answers but it seems others do... Just to let you know I'm thinking of you both and hoping for the best possible outcome..... Good luck!

[gonagetbetr]

Honey,
I am so sorry that your hubbys doc is a jerk
is there anyother reason why he wants to stop altogether instead of just reducing dosage? Hopefully you have a different doc than he does and if so do you think that he could get in to see yours asap and get the meds he needs to be able to continue?
please keep us posted

Raheem,
I guess i am a little confussed I thought that the riba made the virus multipy at a fast rate so that the interferon could kill it. Why would you want to continue to take the riba if you didn't have the peg to kill the virus?
I may be way off base here if so please let me know

[honey1616]

Thanks all of you so much for all your responses!  Unfortunately he is a jerk and also he is my dr also!  He says for his office,,,he is having to tell my husband to stop treatment today.  As far as neupogen, we just called office again and said we would like to go against his better judgement and half the dose and start the neupogen right away.  Again,,,his reply,,,Is that he has to do research on neupogen as he has not prescribed it!!  Wow,,,I can't believe this,,, and thinking if anyone going to this office needs procrit or this,,,I guess they just stop treatment! Amazing...huh?  He seems to get irritated with me when I have information I have acquired on hep c and treatment and when I have my folder with me,,,,He won't look at any of it. Its all so frustrating to go to this dr and yes,,,Cuteus I would like to change but a long ways for us to drive to good drs and also wouldn't be able to get in to someone new for a month or so. With my husbands job(work hours) it would be hard for him to have day during week to drive and then to go to hospital for bloodwork in bigger city sooooo,,,I guess at this point,,,our decision to the best I can think of is for him to take riba(regular dose right?)  Shot night was just sunday nite for us so that gives us some time here for this blankety blank dr to read up on neupogen and maybe we could still get a prescription by monday of next week.....Again,,,thanks so much for being there and a sounding board as I think by reading your posts,,,It helped us come to this decision,,,,

[cuteus]

I think he meant full riba with the interferon reduction. some, like me, tend to do short direct answers, as if thinking and typing gets tiring, and might not be clear in the comment.  Read the post again and see if you get what i did after reading a couple of times...lol

[raheem]

I stayed on the full dosage of ribavirin (1000 mg.) and reduced the interferon dosage from 180mcg. down to 135mcg.

[honey1616]

Yes....Lost was correct as he said stop totally all meds.  We looked at him funny but he claims the riba is no good without interferon sooooo I'm going with Raheem's advice on riba..

[jonihs]

I thought that the riba mutated the cells because the Peg can't kill a healthy cell. I didn't ever hear anything about it speeding up production.


Anyone who has finished tx./ New sojourn/ help!  I've been done for a month now and my hair is still falling out! How long can it take to stop?

                    Thanks, Joni

[cuteus]

you have every  right to be upset, I hope he is not your GI also. If your husband is not suffering any significant side from the count decline, why insist  on stopping above all else?  It is so hard to confront drs that are arrogant and with sensitive egos.  I know what thread you  cant  post on, I couldn't either.  
Perhaps it is time to start searching for another GI, just in case. remember I'm on my 3rd and was ready to go for the 4th if they did not assist me in extending Tx. Today I found out I don't have to.
hang in there, hon.

[raheem]

Regarding my first comment to your question, just to make myself clear, do NOT take the ribavirin without interferon. The ribavirin is useless and frankly harmful without the interferon.  Perhaps I should NOT have said "cutting the interferon at six months".  I meant REDUCING the dosage of the interferon at 6 months.

[Sam Hall]

Neutropenia during combination therapy of Interferon and Ribavirin

Alejandro Soza, James E. Everhart, Marc G. Ghany, Edward Doo, Theo Heller, Kittichai Promrat, Yoon Park,

T. Jake Liang, and Jay H. Hoofnagle



Interferon therapy of hepatitis C causes a decrease in neutrophil counts, and neutropenia is a common reason for dose adjustment or early discontinuation. However, it is unclear whether neutropenia caused by interferon is associated with an increased rate of infection. In this study, we assessed factors associated and clinical consequences of neutropenia before and during interferon therapy of chronic hepatitis C. A total of 119 patients with chronic hepatitis C treated with the combination of interferon alfa and ribavirin were analyzed. In these studies, neutropenia was not used as an exclusion or dose modification criterion. In multivariate analysis, only black race was associated with baseline neutropenia. During treatment, neutrophil counts decreased by an average of 34%. Among 3 blacks with baseline neutropenia without cirrhosis or splenomegaly, there was little or no decrease in neutrophil counts (despite typical decreases in platelet and lymphocyte counts). Documented or suspected bacterial infections developed in 22 patients (18%), but in no patient with neutropenia. United States population estimates suggest that 76,000 blacks with hepatitis C have neutrophil counts below 1,500 cells/

L and might be denied therapy if this exclusion criterion was generally applied. In conclusion, neutropenia is frequent during treatment of hepatitis C with interferon and ribavirin, but it is not usually associated with infection.

Constitutional neutropenia, which is common among blacks, should not exclude patients

from therapy with interferon as these patients usually have minimal further decreases in neutrophil counts on therapy and are not excessively prone to bacterial infections.

HEPATOLOGY

2002;36:1273-1279.)

Lifted from Janis7hepc

[TnHepGuy_]

I'm sorry to hear, but it sounds like you are pushing your doc about certain things he doesn't know about - and it intimidates him. That's why it's soooooooooooooooooooo important to find out before beginning tx if the doc uses Neupogen and Procrit. And, if they will intervene BEFORE dosage lowering.

My first shot of Neupogen (at week #5) occured when my neutrophils were at 600 - and they went up immediately. This week I ended up doing my second shot (week #18) when the level dropped to 700). I know of someone who's ANC dropped to 225 - did 2 shots of Neupogen and within a few days was up to 900. With Neupogen it's an absolute given that the white counts will rise. And, here is a <a href="http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1_Hepatits_C/Neutropenia.pdf">paper</a> by some top docs of Hep C (including Hoofnagle) stating that "<i>In conclusion, neutropenia is frequent during treatment of hepatitis C with interferon and ribavirin, but it is not commonly associated with infections. These results suggest that patients with constitutional neutropenia probably can be treated safely and
may not require dose modification.....neutrophil counts of as low as 500 cells/

[couchpotato]

I am sooo sorry to hear of your doctor's decision and his unwillingness to px neuprgen for your hubby. I was under the false impression, I guess, that it was readily available to all tx patients in U.S. We as patients are at our dr's. mercy at times and it is difficult to know how far to push before we hit that brick wall, but don't give up, alright? I am really sending you my best and hope you rectify the situation to the betterment of you and yours.  Couch  P.S. Thanks for the support you have always shown me, this is a rough road we are on and sometimes the potholes are HUGE!

[honey1616]

Hey,,,What can I say.... except each and everyone are so awesome! I owe everyone here a big favor!  Today has been a wild day between some business have toos and trying to check out everything I can get my hands on for not stopping meds, I have now either had a phone to my ear and/or on computer.  Everyone here that is experiencing tx right now or has knows....That you wouldn't want to get to 6 month svr to mess up if there is a possible answer. Who wants to start over?  Not Me!  TnHep...some great advice as usual,,,didn't even think of calling pharmacy etc...and just did and of course not in stock but can get within 2 days.  Another great point...For All Newbies,,,,Check with your dr in beginning to see what happens or he uses if falling down in blood work.  I guess we jumped to quickly and were scared and just started tx.  I have learned so much about this disease and tx through you guys!  I even called before 5 drs office again and said,,,we wanted at least to try the medicine to see if it would work and if a problem,,,We could find someone else to prescribe so hopefully the Good Dr. will do his catch up reading tonight (smirk)  

Anyways Rev,,,yes we do have supply for next 6 months so the meds are no problem.  He is going to continue full riba like you suggested and hopefully we will have an answer on neupogen before next sunday (shot nite) and if not,,,Take reduced shot!
Yeah Couch,,,I also thought same about no problem here in states getting extra meds,,,Guess I was wrong!  Now I know what you all go through and its just scary to think you might be starting this wild adventure and then have no back up right smack midway.
Thanks,,,So Much!!  (((((HUGS)))) To the Best People!

[TnHepGuy_]

<a href="http://www.clevelandclinicmeded.com/hcv/cma.htm">Hepatitis C Management Monograph - Clinical Management Algorithm</a>

(from the paper):

"<i>If side effects become intolerable or if there are marked decreases in the absolute neutrophil count (<b><500</b> cells/mm3) or platelet counts (<30,000 cells/mm3), adjust the dose of PEG-IFN downward. Again, <b>we recommend adjunctive therapy with filgrastim (i.e. - Neupogen)</b> at the physician's discretion as well as more frequent monitoring of blood parameters. <b>The clinician must keep in mind that the dose-reduction recommendations contained in package inserts are overly cautious, and most clinicians do not adhere to them.</b></i>"


<a href="http://www.hivandhepatitis.com/hep_c/news/082503a.html">Management of Hematologic Disorders Associated with Hepatitis C Virus Infection</a>

(from the paper):

"<i>The most important factors in successful eradication of HCV are adherence to therapy and dose maintenance .....

Strategies for Treating Hematologic Disorders in HCV-Infected Patients .... Granulocyte colony-stimulating factor (G-CSF):  Recombinant human G-CSF (filgrastim, an agent that enhances granulopoiesis in neutropenic patients with cancer who are receiving IFN-alfa), stimulates production of multipotent hematopoietic progenitor cells and mature granulocytes.

Although there are no guidelines for the use of G-CSF in the HCV-infected population, the rationale for its use is predicated on its success in patients with cancer who are receiving chemotherapy.</i>"

<a href="http://www.ccjm.org/PDFFILES/hepadOng.pdf">Managing the hematologic side effects of antiviral therapy for chronic hepatitis C: Anemia, neutropenia, and thrombocytopenia</a>

(from the papaer):

"<i>Management looks to granulocyte colony-stimulating factor
The management of neutropenia, like that of anemia, is variable. While some clinicians tolerate more profound neutropenia before recommending dose reduction, others are using filgrastim to raise the neutrophil count in HCV-infected patients receiving combination therapy. Filgrastim is a recombinant human granulocyte colony-stimulating factor (G-CSF) that is used to increase white blood cell and neutrophil counts in cancer patients with chemotherapy-associated neutropenia. Very few studies have reported the use of filgrastim in patients with chronic hepatitis C. Van Thiel and colleagues19 evaluated filgrastim as an adjunct to interferon in HCV- infected patients with advanced liver disease. All 30 patients had histologically confirmed cirrhosis. They were randomly
assigned to receive interferon alfa-2b alone or with 300 mg of filgrastim given twice a week. The dose of interferon alfa-2b was 5 MU daily. Although the mean and peak white blood cell counts were higher for the patients receiving filgrastim, the nadir values were the same between the two treatment groups. A
higher proportion of patients receiving filgrastim (53% vs 40%) achieved SVR, but this difference was not statistically  significant. Filgrastim appeared to be fairly well tolerated in this study. In a more recent study,20 the use of filgrastim allowed patients to resume and maintain their full dose of
peginterferon. In an additional study,17 filgrastim was used to manage neutropenia in 39 patients who were treated with peginterferon alfa-2b and ribavirin. Preliminary results from this study demonstrate that 89% of patients receiving filgrastim had significant improvement in their neutrophil count (Younossi, unpublished data, 2004). <b>Together, these results indicate that filgrastim may be safe and effective in raising neutrophil counts in HCV-infected patients undergoing antiviral therapy.</b> Nevertheless, future research will be important to better understand the clinical implications and management of neutropenia in these patients.</i>"


TnHepGuy

http://www.clevelandclinicmeded.com/hcv/cma.htm

http://www.hivandhepatitis.com/hep_c/news/082503a.html

http://www.ccjm.org/PDFFILES/hepadOng.pdf

[RUNNINGWOLF]

So sorry that your doc is so in the ice age,,,,hope something works out,,,,,I know everybody PRAY that it will all work out ok.  OKAY?

I do have some good news, I am on week 14/48 and my 12 week  
viral load quantitative was 0 yes that's a big zero.   I feel goood about it esp since i am genotype 1A,,,,but i am figuring
on and wanting to go on after my 48th week,,(if i can) and continue long term tx

[foreign boy]

Well my hepatologist start neupogen under 0.5, and he is doing hep c and only hep c in a university research hospital. I've always been surprised by the level of biological test I was instructed to see him or someone of his staff at once (1000 for the ALAT, less than 20 000 for platelets, more than 500 for GGT ...) and "normal" lab results. I've been on normal interferon, normal interferon and riba, Schering peg interferon (viraferon peg) and riba, and now Roche peg interferon (pegasys) and riba. This is my fourth treatment. I definitively prefer Pegasys: sides differents and much mor manageable for me. For those of you who remember I posted some weeks ago: sudden total loss of hearing at right ear (due to compression of the auditive nerve). I declined the ten days hospitalisation to receive treatment, so I got the treatment at home (doc do not like you to take those meds outside hospital, they get you very confused (i can confirm) and in my case induced real narcolepsy). The good news is that hearing is back as before, that my PCR is still limit detectable (700 UI/ml level of the test at 615) (afer 10 days of high dose corticoid), that I'm back to full dose Pegasys (was reduced to 135 during one month). The bad news is that it seems I've a brain 20 years older than my biological age. I'm undergoing an 18 months treatment this time.

[TravelGrl]

I agree with Southernboy, .6 is okay if he can get a dose of neupogen in today or tomorrow...When is he scheduled for his next Peg shot?  I would fight to keep him on the current dose and just add a shot of neupogen 300mcg once or twice a week (monitor)to see his response...Neupogen works immediately and will most likely raise his white cells more than enough to continue with the current dosing..My daughter was on neupogen twice a week...She needed it from her first week of therapy on...They also almost stopped her but the neupogen worked almost instantly...

Good Luck and let me know how you make out..
Jodi

[Southernboy]

Hi there honey,

0.6 is low but I think it is not as critical as your doc says it is.  My docs started me on Neupogen when I broke below 1.0.  I had previously been below 0.5 (this was during my first round of tx) with no panic, dose reductions or adverse reactions.  As a side note, I was told that Neupogen is very fast acting (as is not the case with Procrit which can take several weeks to kick in).  It's effects start happening within a day or so.  I do not think stopping tx is the ideal thing to do.  I would insist on Neupogen immediately.  This is his life we are talking about and it sounds like your doc is just following the approved protocol, which we know does not always work with tx.

Best to you and hubby,
Steve