Aa
Doctor
I am on about week 19 on the ribovarin, Pegasy and the Victrellis. I am a non responder from years ago of 2 trys with the Rib and interferon and then the Peg and the Rib so I guess I am stuck with the whole year of this. So far I have done well but my white count has been down for months as low as 1.9. The doctor wanted to wait until one other number in my absolute nuetrlytes reached below 1000 and it came close. I was having labs every week to watch and suddenly they jumped to 3.3 which is almost normal. (BTW my labs said after 3 months the virus was undetectable YEA!) My question is when do you think I should have CBC done again? I am afraid that could of been a mistake in labs plus my red is dropping now too. He wants me to wait 5 weeks. I feel this is too long and they never return my calls and treat me like I am no body. I know I spelled some words wrong so please excuse
I just went and had my 6 month V/l done and I am still undetectable. BTW I am a non respoder and doing the triple with the boceprevir . It says I am less than 43 not detected and the other says 1.63 not detected. I did have to do 3 shots once a week for 3 weeks of the nuepogen since my white dropped and went back to normal then I skipped the last 3 weeks and my white count was down but went back to 2.3 and my neutrophils are at 1518. Yea!!! My red is dropping slowly along with my platelets but still hanging in there. My platelets where down to 60 but went back up to 73 and my red is 3.08 and my hemoglobin is 10.7 and my hemocrit is 32.7. Is this good??? I am very happy but still have 6 more months to go. Will it get worse? I tire pretty easy but I am still able to work my 2 jobs
"Is this normal for the medicine"
Yes
Platelets
In the hepatitis C studies, platelet counts decreased in 52% of CHC subjects and 51% of CHC/HIV subjects treated with Pegasys alone (respectively median decrease of 41% and 35% from baseline), and in 33% of CHC subjects and 47% of CHC/HIV subjects receiving combination therapy with COPEGUS (median decrease of 30% from baseline). Moderate to severe thrombocytopenia (less than 50,000 cells/mm3) was observed in 4% of CHC and 8% of CHC/HIV subjects. Median platelet counts return to pre-treatment levels 4 weeks after the cessation of therapy.
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Adult Patients
When dose modification of Pegasys is required for adverse reactions (clinical and/or laboratory), initial dose reduction to 135 mcg (which is 0.75 mL for the vials or adjustment to the corresponding graduation mark for the prefilled syringes) is recommended. Dose modification to 135 mcg per week can also be achieved by using a 135 mcg/0.5 mL strength disposable autoinjector. Dose reduction to 90 mcg (which is 0.5 mL for the vials or adjustment to the corresponding graduation mark for the prefilled syringes) may be needed if the adverse reaction persists or recurs. Following improvement of the adverse reaction, re-escalation of the dose may be considered [see Warnings and Precautions (5) and Adverse Reactions (6)].
Table 3 Pegasys Hematological Dose Modification Guidelines
Laboratory Values Recommended Dose
Platelet <50,000 cells/mm3 Reduce to 90 mcg
Platelet <25,000 cells/mm3 Discontinue treatment
http://www.drugs.com/pro/pegasys.html
Yes
Platelets
In the hepatitis C studies, platelet counts decreased in 52% of CHC subjects and 51% of CHC/HIV subjects treated with Pegasys alone (respectively median decrease of 41% and 35% from baseline), and in 33% of CHC subjects and 47% of CHC/HIV subjects receiving combination therapy with COPEGUS (median decrease of 30% from baseline). Moderate to severe thrombocytopenia (less than 50,000 cells/mm3) was observed in 4% of CHC and 8% of CHC/HIV subjects. Median platelet counts return to pre-treatment levels 4 weeks after the cessation of therapy.
--------------------------------------------------------------------------------------------
Adult Patients
When dose modification of Pegasys is required for adverse reactions (clinical and/or laboratory), initial dose reduction to 135 mcg (which is 0.75 mL for the vials or adjustment to the corresponding graduation mark for the prefilled syringes) is recommended. Dose modification to 135 mcg per week can also be achieved by using a 135 mcg/0.5 mL strength disposable autoinjector. Dose reduction to 90 mcg (which is 0.5 mL for the vials or adjustment to the corresponding graduation mark for the prefilled syringes) may be needed if the adverse reaction persists or recurs. Following improvement of the adverse reaction, re-escalation of the dose may be considered [see Warnings and Precautions (5) and Adverse Reactions (6)].
Table 3 Pegasys Hematological Dose Modification Guidelines
Laboratory Values Recommended Dose
Platelet <50,000 cells/mm3 Reduce to 90 mcg
Platelet <25,000 cells/mm3 Discontinue treatment
http://www.drugs.com/pro/pegasys.html
What about my platelets. Since we talked I am on the neupogen shots and do one a week and just did my third and my labs after the second went from 1.5 to 5.5 and my absolute nuetro from 880 to 4800 or so. I dont have the labs right in front of me right now but that is close.. My red count and hemos are great and still doing the same. My concern is my platelets. They keep dropping and the labs I did last week they where at 60. Is this normal for the medicine or is there something else going on?
Hi Again! They put me on the nuepogen shots. I do one a week for the past 2 weeks and my white jumped to 5.8 from 1.5 and my neutrophils went from 880 to 4845. My doctor wanted me to go ahead and do another one this week and then skip a week and check labs. My red is doing good at 3.34 and hemoglobin is 11.3. My MCV and MCH are a finger high. I am concerned about my platelets. They continue to drop and now down to 60. Is this normal? I am going on my 6 month of the victrellis, Rib and Peg. BTW. He also decreased my Rib from 5 pills to 3 two weeks ago to help white
Ha! Ha! I have to laugh because I do feel like I am in a bad comedy of the 3 stogies at my expense.. Unfortunely I do not have the time nor the funds to change doctors and he is the best in Atlanta. It is the staff and I hope to get this cleared up when I see him next week. I still have not heard a word from the office on how often to take the shots and how often to my next CBC etc and I think I will wait until I see him next week to ask. I only know because the pharmacy called me to let me know they where sending it and how to give the shot etc. Don't you think I should wait until then?
Oh I agree I do call and get them faxed which usually the girls do not have up front and the one nurse that is messing me up has them. I realized the doctor needs to check them but I think a week is plenty of time. The nurse still has not called me to tell me when i was to get the nutrogen and how often i am to do my labs or any information at all.. I get most all my information from the specialty pharmacy and they are the ones that called to tell me they where shipping overnight yesterday and how often to take I have an appointment with the doctor next week and I will have all my ducks in a row as I do not think it is him. I believe it is that nurse and his staff and not aware of what they are not doing. or should I say doing wrong he is the best in Atlanta and I hate to change in the middle and I have to keep my job so I cannot go running around looking for different doctors nor can I afford them or the time off work.
My absolute neutrophil count was 800 and my white was 1.7. They are suppose to order me nuprogen to give myself daily or 3 times a week.
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800 seems kind of high for daily Neupogen much less three times a week. It's like NYGirl said above. Unless you have other conditions normally intervention is considered when ANC <500
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It was awkward for me to ask copies of my labs. I did not want to be a pest and I hate confrontation. It took a few tries to build the courage but I learned how. I encourage you to try the same thing. It takes persistence but you can do it.
Do not let them blow you off or give you the run around. Your medical records are yours. I don't know if you have convenient access to a fax or if they will email your labs or what but this truly is a good time to advocate for yourself. This is crucial especially if you do end up going on Neupogen. This med requires frequent labs (weekly) and the side effects can be very bad for some people.
I hope you can forgive me for coming off as preachy but you deserve the peace of mind of knowing and understanding what is happening to your body as well as how your treatment for this disease is being managed
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800 seems kind of high for daily Neupogen much less three times a week. It's like NYGirl said above. Unless you have other conditions normally intervention is considered when ANC <500
______________________
It was awkward for me to ask copies of my labs. I did not want to be a pest and I hate confrontation. It took a few tries to build the courage but I learned how. I encourage you to try the same thing. It takes persistence but you can do it.
Do not let them blow you off or give you the run around. Your medical records are yours. I don't know if you have convenient access to a fax or if they will email your labs or what but this truly is a good time to advocate for yourself. This is crucial especially if you do end up going on Neupogen. This med requires frequent labs (weekly) and the side effects can be very bad for some people.
I hope you can forgive me for coming off as preachy but you deserve the peace of mind of knowing and understanding what is happening to your body as well as how your treatment for this disease is being managed
I don't know where you live but, if it were me, I would start looking for a new doctor. Your situation sounds a bit like mine in that I felt like i was in a nightmare skit with The Three Stooges. My team was screwing up big time and if I had not been correcting all of their mistakes, I probably would have failed treatment. I did finally find a new doctor in a large city nearby. I got a University affiliated doctor. I have to drive 70 miles one way to get there, but believe me, it is worth it. They know what they are doing.
If you are so inclined, try going on the internet to look for a Hepatologist (Gastroenterologist who specializes in liver disease). You could start out by looking at the university affiliated hospital in that city and checking their Hepatology and/or Gastroenterology clinics. You can tell from the bios which docs are liver specialists.
If you let us know which large city you are near, someone here may know of a good Hepatologist in your area.
Best of luck.
If you are so inclined, try going on the internet to look for a Hepatologist (Gastroenterologist who specializes in liver disease). You could start out by looking at the university affiliated hospital in that city and checking their Hepatology and/or Gastroenterology clinics. You can tell from the bios which docs are liver specialists.
If you let us know which large city you are near, someone here may know of a good Hepatologist in your area.
Best of luck.
Hi Frijole!
Yes it sounds to me after getting my lab results yesterday that I will be on nuprogen the rest of my treatment. They where talking about 3 times a week or daily????? Anyway did you give yourself the shot or did the doctor? How expensive is this shot since it is coming from that specially Pharmacy?
Yes it sounds to me after getting my lab results yesterday that I will be on nuprogen the rest of my treatment. They where talking about 3 times a week or daily????? Anyway did you give yourself the shot or did the doctor? How expensive is this shot since it is coming from that specially Pharmacy?
Yes I am very upset with the nurse. There was a new one there yesterday there replacing her for the day and was not able to locate them but finally did. My absolute neutrophil count was 800 and my white was 1.7. They are suppose to order me nuprogen to give myself daily or 3 times a week. Did you give yourself the shots or did the doctor? This nurse also informed me that I as to see the doctor every month and I was told different by that other nurse. I have only seen the doctor one time and that was before I started my treatment 6 months ago. The new nurse thought and the doctor thought I as going to be done next month so letting me slide but I informed them I was a non responder and had 6 months to go she flipped. They are completely lost at that office at my health expense. Anyway they are to call me today and try and order the shots. My question to you and others is 1. Do you give yourself these shots? 2. How costly are they? i will probably have to do them the duration of the next 6 months.
I understand your frustration in not being able to get an answer. Your doctor (or staff) should be able to relay the information to you to keep you informed on your CBC's. The labs are sometimes unable to disclose information directly to the patient, so I do understand their reluctance to give you the info. The doc's assistant should be able to get a copy to give this to you within a day or so.
I was on Inf/Riba and my ANC (absolute neutrophil count) tanked at about 8 weeks. I was on neupogen for the remainder of the 48 weeks and was referred to a hematologist to keep track of the ANC. As a result, I was able to have CBC's 2x per week. I agree that you should be able to request to have them at shorter intervals, perhaps every other week until they stabilize. I would ask your doctors office if you should consider finding another doctor, preferably a hepatologist, that will be more responsive to your phone calls. You deserve better treatment from their staff. Unfortunately, the doctor is unaware of the poor follow up of the staff and it should be brought to the doctor's attention to allow them to address it.
I was on Inf/Riba and my ANC (absolute neutrophil count) tanked at about 8 weeks. I was on neupogen for the remainder of the 48 weeks and was referred to a hematologist to keep track of the ANC. As a result, I was able to have CBC's 2x per week. I agree that you should be able to request to have them at shorter intervals, perhaps every other week until they stabilize. I would ask your doctors office if you should consider finding another doctor, preferably a hepatologist, that will be more responsive to your phone calls. You deserve better treatment from their staff. Unfortunately, the doctor is unaware of the poor follow up of the staff and it should be brought to the doctor's attention to allow them to address it.
I am getting very frustrated. Maybe I am over reacting so please let me know. I went to have my CBC done last Wed Feb 6th and I was very anxious since it had been over 4 weeks and they where doing them weekly since my white count has been so low and the last test they suddenly jumped from 1.9 to 3.3. I called the nurse on Friday the 7th in the morning since the lab said the doctor would have the report Thursday and she said they where back but the doctor has to look at them first and would call me later that day. I told her I was very concerned on the results as I did not know if I should wear a mask in crowds since my white has been down so much in the past and you where doing it weekly and then just stopped. Her remark was "well if your that concerned then wear a mask" She did not call back and I left another message today and I bet she does not call again. Am I being unreasonable?
I have learned so much from this site and everyone has been so helpful and informative. I want to wish all of you the best of luck on your therapy!! I look forward to communicating more with all of you.
Thank you and I hope you are doing well. I am about sick of this doctor and I have never seen him except one time before I started my therapy. I deal with the nurse and she has been a crab lately too. She acts like it is a big deal to give me my blood results. ITS MY BODY THEY ARE KILLING NOT HERS SO WHERE DOES SHE THINK SHE HAS TO WAIT A WEEK TO LET ME KNOW THE RESULTS OR SCHEDULE A TEST
He was watching that number in absolute nuetryltes to reach under 1000 so he was checking it every week but when it shot up he said 5 weeks to redo. It just scares me that it could of been wrong after months of it being border line to it jumping up in one week to almost normal. Can they make mistakes in blood work? I am sure they can but you would think he would of wanted to check it one one more time since I got the flu right then and almost had to stop therapy due to high fever for 10 days. Oh well I will find out tomorrow on labs and pray he did not let them both drop too much
absolute nuetrlytes reached below 1000"
Neuts go up and down often by themselves and most doctors dont prescribe unless they are extremely low under .500 at least. Mine dropped to around there and my doctor said wait a few weeks - I did - they went right back up on their own.
The most important thing is 5 weeks is way too long to wait. You should be having blood work every two weeks at MOST if you are experiencing fluctuating blood counts numbers. Find someone else. That is criminal to have to wait so long!
A hemo in the 11s at week 19 is FANTASTIC do not worry about that!
Neuts go up and down often by themselves and most doctors dont prescribe unless they are extremely low under .500 at least. Mine dropped to around there and my doctor said wait a few weeks - I did - they went right back up on their own.
The most important thing is 5 weeks is way too long to wait. You should be having blood work every two weeks at MOST if you are experiencing fluctuating blood counts numbers. Find someone else. That is criminal to have to wait so long!
A hemo in the 11s at week 19 is FANTASTIC do not worry about that!
Your hemoglobin (HGB) of 11.3 is actually pretty good. Typically when that number reaches 10 some type of intervention is often considered. It depends on how you are feeling though. Normally at the time the first course of action would be to reduce the Ribavirin dose by 200 mg. This is up to you and your doctor. It helps to keep any eye on this and be aware of the symptoms in case your labs end up being five weeks down the line:
This is from the HCVAdvocate:
"...symptoms of hemolytic anemia include shortness of breath, fatigue, pale skin color, chills, rapid heart rate, depression, and reduced quality of life.fatigue."
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Another number to keep an eye tends to be Absolute Neutrophil Count (ANC) rather than White Blood Count.
I'm not sure about the other values you mention since they are not exactly used to gauge response to the treatment meds. You could check here if you want:
http://labtestsonline.org/understanding/analytes/cbc/tab/test
This is from the HCVAdvocate:
"...symptoms of hemolytic anemia include shortness of breath, fatigue, pale skin color, chills, rapid heart rate, depression, and reduced quality of life.fatigue."
___________________
Another number to keep an eye tends to be Absolute Neutrophil Count (ANC) rather than White Blood Count.
I'm not sure about the other values you mention since they are not exactly used to gauge response to the treatment meds. You could check here if you want:
http://labtestsonline.org/understanding/analytes/cbc/tab/test
I am having trouble logging into this site but I think it was you that asked about my numbers. My white has been low through the treatment and then suddenly went up to 3.3 so they told me to return in 5 weeks. I gave them a push so I am having them repeated this week. My red count was 3.31 and my hemoglobin was 11.3, Hemocrat was 33.9 and my MCV was high at 102.2. What is a mcv? It looks like I am in good shape but again do not want to tank so I want to see where the numbers are now especially my white. I cannot understand why it went up so high after months of being so low. Now if this does not let me post this I give up. I have tried all morning and reset my password etc
Welcome to the forum! You've gotten excellent advice from a couple of our most knowledgeable members, but I wanted to add one more personal experience. I'm cirrhotic and I completed 48 weeks of triple tx last September. My white cell count hovered around 1.6 most of the time, my ANC went as low as .60 but was usually around .80, my HGB went as low as 10.1 but usually was about 10.7. My hepatologist had standing orders for CBC's to be done every 2 weeks and would up it to every week whenever the numbers were at their lowest extremes. They got down to almost low enough to require rescue meds, and although they never dropped all the way past that line, the tests were weekly whenever they threatened to go below. Waiting 5 weeks to test sounds way too long to me - things can drop pretty quickly. I agree with the suggestion if enlisting some extra support from your PCP. Good luck!
I think your instincts are right. You treated before so you see how rapidly blood values can fluctuate (and tank). Five more weeks might be ok for your next VL since that puts you at week 24 or so but a CBC sooner than that sounds like a good idea. Keep an eye on your Hgb and your absolute neutrophil count.
The lead in is the period after the four weeks of Peg & Riba. There would be your base line viral load (your starting viral load), your viral load after the four weeks (or the lead in) then with the one at eight weeks (with Victrelis)
This really is a good forum with all types of experience, insight and even expertise. I hope you check in more often :)
The lead in is the period after the four weeks of Peg & Riba. There would be your base line viral load (your starting viral load), your viral load after the four weeks (or the lead in) then with the one at eight weeks (with Victrelis)
This really is a good forum with all types of experience, insight and even expertise. I hope you check in more often :)
Thank you for your support. I was afraid to join any of these talk rooms but everyone here sounds like they are very helpful and kind. The best part is they are going through the same thing I am. I could not get any answers from anyone and doing this by myself with no support at age 58 and a female is scary. I feel like a pill machine LOL!!!!
I am not sure what a lead is but does 45 sound right? All i know that is was okay to continue my treatment and the week of March 14th they will check it again as that will be my 6 month VL check. I am going to get my labs done next week so I will be able to see where I am at. Again it has been over 5 weeks but I am going to hang in there until next week. Now if it is not good then I am sure the doctor will insist on more times like he was doing before. I am happy to hear that I am not the only one that has low white count. My hung between 1.7 to 2.5 and then jumped to that 3.3. I am sorry to hear that you had such low counts but it is good to know that I am not alone
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If your hemoglobin is dropping (you do not say how low it is) I would think that 5 weeks is too long to wait for a blood count to be drawn. If you cannot get your Hep C treating doc to return calls, then maybe you can explain the situation to your primary care physician and ask your primary care physician to order a blood count to be drawn sooner.
If you post your results on the forum it will help us to better respond. Still, if your hemoglobin is dropping, then I would think that you should have a blood count drawn sooner than 5 weeks.
Best of luck and let us know how things turn out for you.