Aa
Neupogen
Looks like i have to either reduce my pegasys dosage immediately (don't know the magnitude yet) or else start taking Neupogen for low neutrophils after 16 weeks of tx. Insurance coverage is not sufficient to pay for Neupogen, which costs $1000s per month -- paying out-of-pocket is impossible. Nurse tells me that Amgen has no financial aid program for patients in my situation because the drug isn't FDA approved for this indication. Does anyone know where else i might turn for aid, perhaps a program where the patient can receive free medication if proof is provided that insurance coverage is maxed-out and patient has low income?
Also, has anyone reduced dosage this early in the game and still obtained SVR? I am 1b and currently "undectectable" on PCR.
Thanks, Stan
Also, has anyone reduced dosage this early in the game and still obtained SVR? I am 1b and currently "undectectable" on PCR.
Thanks, Stan
I hate it when it's this quiet on here!!! I finally was able to get rid of most of the pain and out of bed.. and there's NOTHING going on on here!! LOL.. oh well, hope everyone is getting a good night sleep! I still have the "dressing room" scene in my mind..and Lou in his evening gown, spike heels, and wig...pumping iron....... at least I'll go to sleep laughing!!
SWEET DREAMS ALL !!
SWEET DREAMS ALL !!
I've never heard of an association between neupogen and luekemia. Worries me as I have been taking 3 shots of neup a week for 3 motnhs
WBC at 2. is still sufficient but the neutrophills at 0.4 is definitely getting low, Most of our bloodwork on these meds do come back from labs with ***(low markers) which is normal for this depending on how low. My hubby's dropped to 0.36 and his WBC was 1.8 and yes,,,alarm and the dr did monitor and had him run blood tests again in 2 weeks before making a decision on neupogen. Then they came up to passable again by interferon guides lol Have you constantly been running low because this maybe just what the meds are doing to you in this area. If all else is looking pretty good,,,I would talk to my dr and see if he would let you go 1 to 2 more weeks,,,before making a decision. From what my dr has explained,,,,you have to look at overall picture and how everything else is running also.. I understand of course about if insurance coverage does not cover neupogen,,,,it would be impossible to afford this so hoping you can give your best shot at it before reducing pegasus as you are now 4 months into tx....
Sorry, i dont know of any programs that could help you financially. I just had my pegasys cut to 3/4cc because of white cells, I'm a 1b, but, i further along than you, and undetectable at 16 wks.......I just did 34/48......
I have that insurance issue going on too.....My hemmogl dropped and is at 8.9 and my insurance says they will pay for Procrit, only after doctor has tried and failed at everything else to bring the numbers up........All he has done is cut my Riba back one month from 1200 to 800 which brought my numbers up and then i asked to increase it to 1000 and he agreed........I cant wait to go back neck to neck with my GI and see what else can be done.......I do not want extended therapy.....I pray every night i will clear and stay cleared.......and if not i will deal with it.......I cannot do this anymore, im so tired from feeling so helpless all the time.......I have gained weight 20 lbs, have been working all along, some days hardly making it.......NO fun this summer.........I pray that things will go well with you my friend.........Deb
I have that insurance issue going on too.....My hemmogl dropped and is at 8.9 and my insurance says they will pay for Procrit, only after doctor has tried and failed at everything else to bring the numbers up........All he has done is cut my Riba back one month from 1200 to 800 which brought my numbers up and then i asked to increase it to 1000 and he agreed........I cant wait to go back neck to neck with my GI and see what else can be done.......I do not want extended therapy.....I pray every night i will clear and stay cleared.......and if not i will deal with it.......I cannot do this anymore, im so tired from feeling so helpless all the time.......I have gained weight 20 lbs, have been working all along, some days hardly making it.......NO fun this summer.........I pray that things will go well with you my friend.........Deb
I am or was a genotype 1b. I just finished up 48 weeks of tx three months ago. My WBC and neutrophils were also very low during tx. I did not take Neupogen at all as my Dr. was concerned about a leukemia risk associated with it's usage. Instead, I had a Pegasys dosage reduction at week 29. The dosage was reduced to 135mcg. from 180mcg. which is a 25% reduction. So I had 29 weeks of a full Pegasys dosage and the remaining 19 weeks of a reduced Pegasys dosage. My Dr. said there was no data out there that indicated a dosage reduction at week 29 of 48 would reduce the chances of becoming a SVR. I always stayed on the full dosage of Copegus (ribavirin) throughout the full 48 weeks. I was clear at 12, 24 and 48 weeks and just received a lab result the other day indicating my 3 month post tx HCV RNA PCR was negative also. Hope this helps.
1-800-272-9376. Thats the number to call for billing and reimbursement for nuepogen. Joni
I agree with what Honey said above. I would, however, ask my doc just how low drs will allow their chemo patients to go before intervening. Your WBC is okay but the neutriphils (ANC) is low. My chart shows concern when ANC drops below .7 but my dr says she would have let me go lower (but I don't know how low).
Good luck. If it were me, I would talk to my dr about options and then probably request doing nothing yet and getting blood drawn in another 1-2 wks.
Good luck. If it were me, I would talk to my dr about options and then probably request doing nothing yet and getting blood drawn in another 1-2 wks.
Stan and Debbido....I am sorry to hear that you will have to go through this added stress. Good luck to you, I hope you find the answers you need to continue to SVR.
Raheem:: Congratulations to you. This is good news. Your situation sounds similar to Stan and Deb....your experience is an inspiration to others that have to reduce.
Raheem:: Congratulations to you. This is good news. Your situation sounds similar to Stan and Deb....your experience is an inspiration to others that have to reduce.
thanks for asking -- from friday 8/13 i have two readings -- one says Neu 21.3% with a "L" for LOW indicator by it. the other reads NEU 0.4 10e9/L with a "C" after it which i assume is worse than "L," perhaps it means "Caution"? The WBC is 2.0 10e9/L and also has a "C" beside it.
The low white blood cell-related counts simply make you more susceptible to infection, right? Or do they actually make you feel bad, even if you have no active infection? I've heard conflicting theories.....do low neutrophils create symptoms? I feel like hell, but have been assuming it's the riba (RBC dropping but not yet in danger zone).
Stan
The low white blood cell-related counts simply make you more susceptible to infection, right? Or do they actually make you feel bad, even if you have no active infection? I've heard conflicting theories.....do low neutrophils create symptoms? I feel like hell, but have been assuming it's the riba (RBC dropping but not yet in danger zone).
Stan
I've never heard of an association between neupogen and luekemia. Worries me as I have been taking 3 shots of neup a week for 3 months
I found this article thru a Hotbot search;
http://www.rxusa-neupogen-sales.com/page5.shtml
http://www.rxusa-neupogen-sales.com/page5.shtml
HI,
This is my second time on tx. I started again this past Jan. The first time I did tx was 7/2002 and after 5 weeks my wbc was down to 1.3 so my GI lowered my tx amount and I was getting a shot of nuepogen per week. I stayed on tx for 48 wks and showed undetectable from 3 month of tx until 3 months after tx when it came back.
I've gone to another Dr. this time and even thought he didn't say it was because my tx was lowered for that year I still don't think I had enough to kill the dragon.
This dr has me on full dosage of peg and I have been taking 3 shots a week of neuprogen since week 8. I'ts alot of shots but I don't want the dosage lowered and this Dr wants me to stay on tx for 12 months after I showed undetectable which was in April.
I'm also 1b, female, 53 and ready to get this over with!!!!!!!!!!
Best of luck to you,
Linda
This is my second time on tx. I started again this past Jan. The first time I did tx was 7/2002 and after 5 weeks my wbc was down to 1.3 so my GI lowered my tx amount and I was getting a shot of nuepogen per week. I stayed on tx for 48 wks and showed undetectable from 3 month of tx until 3 months after tx when it came back.
I've gone to another Dr. this time and even thought he didn't say it was because my tx was lowered for that year I still don't think I had enough to kill the dragon.
This dr has me on full dosage of peg and I have been taking 3 shots a week of neuprogen since week 8. I'ts alot of shots but I don't want the dosage lowered and this Dr wants me to stay on tx for 12 months after I showed undetectable which was in April.
I'm also 1b, female, 53 and ready to get this over with!!!!!!!!!!
Best of luck to you,
Linda
A friend found this information in one drug database regarding Neupogen blood adverse effects. I suppose my Dr. was being extra cautious, but I'm glad I didn't take it anyway as it is very expensive and as you know better than I do, it has it's own unpleasant side effects.
C. MYELODYSPLASTIC SYNDROME
1. INCIDENCE
a. 5.5% to 16.5%
(1) Analysis of post-marketing surveillance data of 531 patients with severe chronic neutropenia, reveals that the development of myelodysplastic syndrome (MDS) or acute myeloid leukemia appears to be confined to patients with congenital neutropenia. The cumulative risk of developing MDS by end of the eighth year is 16.5%, representing an annual rate of 2% (Prod Info Neupogen(R), 2000).
(2) Four of 72 patients with aplastic anemia who were treated with filgrastim developed myelodysplastic syndrome (Kaito et al, 1998).
2. OUTCOME
a. Severe (mortality reported).
(1) Of 4 patients, 2 died without leukemic transformation and 2 developed acute leukemia (Kaito et al, 1998).
3. ASSOCIATED SYMPTOMS
a. Monosomy 7 (Kaito et al, 1998).
4. ONSET DURATION
a. EARLIEST ONSET: 12 months (Kaito et al, 1998).
b. LATEST ONSET: 20 months (Kaito et al, 1998).
c. DURATION OF SYMPTOMS (without treatment): permanent (Kaito et al, 1998).
5. CLINICAL MANAGEMENT
a. PROPHYLACTIC MEASURES:
(1) Avoid long-term administration (more than 1 year) of filgrastim to prevent the evolution of aplastic anemia to myelodysplastic syndrome (Kaito et al, 1998).
6. PREDISPOSING RISK FACTORS
a. DOSE-RELATED: Yes.
(1) Patients receiving a mean cumulative dose of filgrastim 822 micrograms/kilogram (mcg/kg) developed myelodysplastic syndrome, whereas patients receiving a mean cumulative dose of 205 mcg/kg did not (p less than 0.05) (Kaito et al, 1998).
b. DURATION-RELATED: Yes.
(1) Patients developing myelodysplastic syndrome were administered filgrastim for a mean of 487 days, whereas those who did not received filgrastim for a mean of 72 days (p less than 0.002) (Kaito et al, 1998).
c. AGE GROUP: Older age did not relate to myelodysplastic syndrome development (Kaito et al, 1998).
d. GENDER RELATED: Gender did not relate to myelodysplastic syndrome development (Kaito et al, 1998).
e. DISEASE STATES:
(1) The risk of developing myelodysplastic syndrome or acute myeloid leukemia appears to be confined to patients with congenital neutropenia (Prod Info Neupogen(R), 2000).
(2) The severity of aplastic anemia did not relate to myelodysplastic syndrome development (Kaito et al, 1998).
f. OTHER: The administration of cyclosporine with filgrastim was a significant risk factor for developing myelodysplastic syndrome. The odds of developing myelodysplastic syndrome was about 20 times greater for patients receiving both drugs compared to those who did not (Kaito et al, 1998).
*******
Essentially this says that the risk of developing leukemia is low except for those taking Neupogen for congentital leukopenia, and for those who take it over a long period of time.
C. MYELODYSPLASTIC SYNDROME
1. INCIDENCE
a. 5.5% to 16.5%
(1) Analysis of post-marketing surveillance data of 531 patients with severe chronic neutropenia, reveals that the development of myelodysplastic syndrome (MDS) or acute myeloid leukemia appears to be confined to patients with congenital neutropenia. The cumulative risk of developing MDS by end of the eighth year is 16.5%, representing an annual rate of 2% (Prod Info Neupogen(R), 2000).
(2) Four of 72 patients with aplastic anemia who were treated with filgrastim developed myelodysplastic syndrome (Kaito et al, 1998).
2. OUTCOME
a. Severe (mortality reported).
(1) Of 4 patients, 2 died without leukemic transformation and 2 developed acute leukemia (Kaito et al, 1998).
3. ASSOCIATED SYMPTOMS
a. Monosomy 7 (Kaito et al, 1998).
4. ONSET DURATION
a. EARLIEST ONSET: 12 months (Kaito et al, 1998).
b. LATEST ONSET: 20 months (Kaito et al, 1998).
c. DURATION OF SYMPTOMS (without treatment): permanent (Kaito et al, 1998).
5. CLINICAL MANAGEMENT
a. PROPHYLACTIC MEASURES:
(1) Avoid long-term administration (more than 1 year) of filgrastim to prevent the evolution of aplastic anemia to myelodysplastic syndrome (Kaito et al, 1998).
6. PREDISPOSING RISK FACTORS
a. DOSE-RELATED: Yes.
(1) Patients receiving a mean cumulative dose of filgrastim 822 micrograms/kilogram (mcg/kg) developed myelodysplastic syndrome, whereas patients receiving a mean cumulative dose of 205 mcg/kg did not (p less than 0.05) (Kaito et al, 1998).
b. DURATION-RELATED: Yes.
(1) Patients developing myelodysplastic syndrome were administered filgrastim for a mean of 487 days, whereas those who did not received filgrastim for a mean of 72 days (p less than 0.002) (Kaito et al, 1998).
c. AGE GROUP: Older age did not relate to myelodysplastic syndrome development (Kaito et al, 1998).
d. GENDER RELATED: Gender did not relate to myelodysplastic syndrome development (Kaito et al, 1998).
e. DISEASE STATES:
(1) The risk of developing myelodysplastic syndrome or acute myeloid leukemia appears to be confined to patients with congenital neutropenia (Prod Info Neupogen(R), 2000).
(2) The severity of aplastic anemia did not relate to myelodysplastic syndrome development (Kaito et al, 1998).
f. OTHER: The administration of cyclosporine with filgrastim was a significant risk factor for developing myelodysplastic syndrome. The odds of developing myelodysplastic syndrome was about 20 times greater for patients receiving both drugs compared to those who did not (Kaito et al, 1998).
*******
Essentially this says that the risk of developing leukemia is low except for those taking Neupogen for congentital leukopenia, and for those who take it over a long period of time.
Yeah,,,I tried also and says closed. We do get 6 a day but if someone clicks on question and then changes mind,,,we automatically lose that for day so possibly happened 3 times today....
Thanks to all for the extremely helpful comments, advice, personal experiences, phone numbers and links. I will let the board know if I'm able to track down an effective Neupogen assistance program so that others might benefit. There are a few more things I'd like to say, but I got home late tonight and am exhausted, so they'll have to wait.
Take care, Stan
Take care, Stan
yep pickle fishing on lake nip one of the worst kept secrets pickerel cheeks yummy
time will tell with the30 year old going on 10 maybe after he loses his family he will grow up! who knows. later my sweetie
time will tell with the30 year old going on 10 maybe after he loses his family he will grow up! who knows. later my sweetie
Sorry for sneaking into this thread, other one is full. Great coincidence Daryl, I know North Bay well, my husband was raised there. Were you fishing Lake Nipissing for pickerel?? Yummy... Brother-in-law and family still there, live on Lakeshore Drive with all the toys. Hope you enjoyed yourself.
Sorry to hear about the kids, did you straighten the "boy" out?? Hope it doesn't drive you crazy. Gotta go to work, check in later.
Couch
Sorry to hear about the kids, did you straighten the "boy" out?? Hope it doesn't drive you crazy. Gotta go to work, check in later.
Couch
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