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Sry to read about your hubby's problems & I'm pleased that you're doing well. I can't answer your question directly, BUT I can say that if I was in your place, I would suggest to the Dr a temporary DOSAGE reduction for hubby rather than terminating Tx in lieu of the FACT that he's responding WELL to Tx.
What's this Drs rationale for not placing your hubby on Neupogen & why is he so stubborn about it??? Pls suspect his motives.
In addition, get additional opinion(s) from other experts ASAP....I wouldn't abandom Tx without additional advice.
Good Luck,
the kid......
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
Good Luck and let me know how you make out..
Jodi
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.
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
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
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.
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
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/µL are likely to be safely tolerated during interferon therapy.</i>"
Here are a few other papers on the topic:
<a href="http://www.natap.org/2003/hepUpdate/day5.htm">Threshold for neutropenia in the adjustment of interferon treatment in HCV infection"</a>
<a href="http://www.hivandhepatitis.com/2003icr/DDW2003/docs/052803g.html">Neutropenia Associated with HCV Therapy May Not Be Associated with Serious Adverse Events</a>
Print these off. Bring them to his office. Call your pharmacy immediately to find out if they have Neupogen - and if not how soon they can get it. Call your insurance company to find out coverage for Neupogen - it's not cheap. The pharmacy I got it from has it listed at $550.00 (thankfully, we were only liable for a 10% co-pay). Also, as strange as this may sound - most phamacy supply companies DON'T ship on the weekends. So, if you called late on a Friday afternoon, for example, and they didn't have it in stock, there is a good chance you might end up waiting until Monday (at least) to get it. And you would want to do the Neupogen shot a minumum of 24 hours before the next interferon shot.
There is no reason to potentially jeopardize your husband's chances at SVR just because your doc is not up to speed on the subject. And it sounds like he may be letting his ego in the way, to boot. Push, push, push. Find the nearest hepatologist in your area. Call that office and ask if they use Neupogen on their Hep C patients. Call any other doc offices - GI's, oncologists (who use Neupogen everyday on their patients), hepatologists - and do the legwork - since your doc isn't. Tell your doc about who you spoke with - and if he needs more information, to call that doc or any other one that uses Neupogen. Tell your doc you DON'T want to cut your husband's SVR chances by stopping/lowering dosage. You started tx to get rid of the virus. And there are Hep C patients all over the world safely taking Neupogen to maintain their neutrophils while on tx.
May God's blessings and mercy be upon you and your husband.
TnHepGuy
http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1_Hepatits_C/Neutropenia.pdf
http://www.hivandhepatitis.com/2003icr/DDW2003/docs/052803g.html
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!
(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
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
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
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
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............
Honey,
I'm so sorry to hear about the trouble you're having. I will pray that everything works out.