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1382010 tn?1279643604

Low Neutrophils

Hey guys, I seem to have gone into a funk the last week or so. I was really getting excited about nearing the end of tx, even though my hair is thin, my eyebrows are gone, I've lost 25 lbs (making me 123lbs at 5'9, skin and bones) and I can barely walk to the mailbox and back in this heat! Summer used to be my favorite time of year and I've had to surrender this one to the HepC monster. Now I find the thought of having to tell my children and fiance that it may not work unbearable. How can I put them through this any longer? I must say I admire every one that I have read about in this forum that has relapsed or had to repeat treatment.
To get off the pity pot and get to the point, I wanted to ask if you hear of anyone getting really sick from the low neutophils? I am currently ordered to take one neupogen shot a week and that seems to be keeping the number between .92 and 1.2 which is lower than the recommended 1.5(per the Dr.) So if I teach preschool and I am exposed to 18 little ones on a daily basis,  what are the odds that I am going to get something? I have been off work for the summer, but I return next week (how I am going to work 8 hrs. a day again?)  I have to if I don't want to lose my benefits. The Dr. just seems to brush everything off and never gives a direct answer (is it because he doesn't have one?) Am I really at risk of becoming desperately ill from a common virus? What will happen if my numbers don't maintain? Do I continue to get a shot a week for the next two months? Not to mention my platelet number is below 100, is that bad? Thanks for listening.
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223152 tn?1346978371
High five (just had to say that).

Your narrative, not being able to walk to the mailbox, sounds more like a hemoglobin problem than a Neutophil problem.  I think there are infection issues being around 18 little children, but you have 8 weeks to go and probably 2 weeks before school starts so only 6 more weeks of treatment on tx.  I am not saying that there is not a possiblity of infection in those 6 weeks, but at least you will be done before the heart of cold and flu season begins. I watched my school age grandkids after school and work for the entire year treating and did not get sick (from them). And, as others have said, your ANC is actually pretty high for tx.  Mine bordered on .6 with neupogen most of tx.  I continued to take neupogen after tx until my white counts came up.  Perhaps you can talk to your hemotologist about that.

The problem with the hemotologists is that they do work in the oncology department and are not familiar with neutophil and hep c issues.  I gave my hemotologist articles when I was treating to explain that we could withstand a lower ANC and not be subject to the infection so common among cancer patients.  If you would like to read some I will give you links.

Sounds like you have done remarkably well - going from 7 million to none.  Only 8 weeks to go.  You can do it.

frijole
Helpful - 0
Avatar universal
Hi There. Congrats on being almost all done. As for your neutrophils you are quite far from being in harms way. As Bill said,  docs don't intercede til the ANC gets to about .5. Studies have shown that patients having lowered ANC from interferon do not acquire more infections than does anybody else. My own hematologist has said that as long as you have .1 (100 neuts) that there are actually enough to fight an infection. Personally I did get an infection but I actually went down to 0 ANC. My case however, is extremely unusual.

Good luck and I hope you get an SVR.
Helpful - 0
179856 tn?1333547362
The Qualitative RCA/PCR was Neg. HCV/RNA not detected. HCV RT-PCR Quant. was <43 HCV/RNA detected.????????There wasn't a numeric value calculated? "

Does it literally say 'detected' on the form or are you assuming that because there is no number before the <43 that you were detected?

If you were detected at week 20 - what I had to do was extend treatment to week 72 to try and get the odds back up. i was UND somewhere between 20 and 24.  Can you get the 24 week test results, the doctor just had to give you one generally if detected at 24 that is the stop point and after that there is really noone who should continue on with the meds as they are 'too late' a responder.

Have faith though even if so the new meds hopefully willl be out and as you have responded to the SOC meds most likely you would do fine.  it's just a matter of WHEN they come out...lots of folks are waiting.
Helpful - 0
Avatar universal
Just wanted to give a little moral support.... When I got to 40 weeks I thought, "at last, almost done!"  and then the time proceeded to crawwwllll along.  It seemed that every day lasted a week and when people would ask "how much longer?' it seemed the answer never changed.  The realization hit that, even though I'd had 9 mos of postitive news, chances are good that the virus will return as soon as treatment is over.  I know what you mean about being in a funk.
I'm in week 46 now, and even though I've felt rotton this week, I'm feeling like I can do anything for 2-1/2 weeks more.  At this point, I barely care if I achieve SVR, I just can't wait to feel better again!
Regarding the question of neutropenia, my ANC has been between 550 and 1200 for much of treatment.  I haven't used neupogen and haven't been sick at all (except for 1 respiratory thing) since starting treatment, in spite of workiing in a hospital and having daily contact with patients.
Good luck when you go back to work and hang in there.  You're almost done.
Helpful - 0
Avatar universal
I was on Neupogen throughout much of my treatment but without it they wouldn't have continued my treatment.  Towards the end I was terribly fatigued and I hated the side effects from the Neupogen.  Physically, it actually made me feel worse because it would cause low grade fever and bone pain.  You're almost there and if work becomes unbearable you can always go out on short term disability.  I'm thinking as a teacher you would have that option along with some type of compensation.  Your doctor would have to approve it and a couple months of time may be very beneficial in helping you complete treatment.  FMLA would be an option too but no compensation with that.

Good Luck and much peace your way too,
Trinity
Helpful - 0
1382010 tn?1279643604
Thanks so much for responding, your answers were very helpful. I hate to say I feel like a real crybaby when I think about others that have it way worse than I do and no I haven't had any sign that the treament isn't working. I take shot #40 tonight and  I was looking at some of my old labs from week 20 but I don't really understand them. I do know the Dr. at that time said the virus was responding to the tx. The Qualitative RCA/PCR was Neg. HCV/RNA not detected. HCV RT-PCR Quant. was <43 HCV/RNA detected.????????There wasn't a numeric value calculated? Before I started tx. The Quan. # was 7320000<50iu and 6.86<1.70 log. I wish that I had found this site when I started tx. it really is great to be able to talk to someone who has been through it. I would have been paying a lot more attention to labs and such all the way. I even had my hepatologist tell me that he hadn't dealt with HepC since Med school (he deals with cancer) his suggestion was "deal with it."
I don't know how I'll deal with it next week but I've been a teacher for 11 years now and I love it. I think that at least I won't be sitting around feeling sorry for myself. So I'm sucking it up and thinking positive!!!  8 more shots and 112 big blues to go!!! Good Luck everyone and Peace be with all of us!!!
Helpful - 0
Avatar universal
I am sorry to hear you are feeling so lousy. I am on treatment also and it's certainly not easy. Dealing with 18 little ones is a lot to deal with while going through this sounds like a lot to handle during tx.  

I assume you are talking about absolute neutrophil count (anc) .92-1.2 is not bad for treatment. most doctors don't intervene with neupogen or dose reduction until you are lower then .5, and some will even allow it to go even lower.

You don't want your anc to get to high from neupogen, you just want to be in safe territory which you are. My Anc went to .28 when I started taking the neupogen, I got an ear infection but it was resolved with antibiotics.

For some reason people on treatment for hcv that have their anc drop do not get infections, that being said, some certainly do. We have a member who went to 0 and had to be hospitalized for sever bacterial infections, this is not common at all though.

When your neutrophils are low you are at risk for bacterial infections, not viruses. My doctor told me that the interferon was actually giving my immune system a huge boost fighting viruses vs pre treatment.

Many people have to use neupogen for the whole tx, but you never know how each individual will respond. I don't think it will get crazy low while you are on neupogen.

i assume when you say your platelets are below 100 you mean 100,000. mine just went to 45,000 and they are fairly concerned, when I was at 62,000 my doctor was not concerned at all. Some people have been as low as 20,000 or so, but that is not good. you are far from that right now so I wouldn't worry about it at this point.

I hope this helped, I am no expert, but have been through similar issues as you have recently.

You said you are getting to the end of treatment. I assume that means that you are undetectable. Have you had some indication that treatment is not working?

Take care,
Dave
Helpful - 0
87972 tn?1322661239
Here’s what Wikipedia has to say about neutropenia; you can interpret this yourself:

“There are three general guidelines used to classify the severity of neutropenia based on the absolute neutrophil count (ANC) measured in cells per microliter of blood:[1]

    * Mild neutropenia (1000 <= ANC < 1500) — minimal risk of infection
    * Moderate neutropenia (500 <= ANC < 1000) — moderate risk of infection
    * Severe neutropenia (ANC < 500) — severe risk of infection.”

http://en.wikipedia.org/wiki/Neutropenia

Platelets at around 100k are rather low, but you shouldn’t be at risk of internal hemorrhage or anything like that; we have cirrhotic patients that are routinely much lower than that. However, you might cause a surgeon mild grief if you got in a auto accident; they’d have to work a bit harder with you ;o). You might not want to play pro football, engage in knife fights, stuff like that…

I hope you don’t have too much trouble with the kids as school starts; it sounds like a lot of work to me. I’m not sure I could manage that on one of my good days, much less in treatment :o).

Good luck,

Bill
Helpful - 0
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