Low Neutrophils

[Diana66]

Since I started tx with a base of 1.64 I have been flaoting around the 0.56-0.7-0.88-1.05 for the last 14 weeks

Today all of a sudden I bottomed to 0.3. This is on an already reduced Interferon dose of 135. I am waiting to hear from the doctor now of what the plan is but would this sudden drop be just from the Interferon or is it possible to have other reason as well

2 weeks after the Incivek: Hemoglobin at 10.1, Platelets at 58 so only the Neutrophils are the problem

Any ideas, suggestions?

[jules2551]

As for your colonoscopy you should wait until after treatment and also your PLTS will have to be higher before they will do one.

Good luck at your Dr's appt.  I hope you get some straight answers.

Jules

[flcyclist]

I agree with frijole that the wbc count would go up to fight any type of infections, rather than down.  I'd suspect an autoimmune deficiency instead, which you might have already mentioned.  When you go in for your doc's appt try to take as much supportive information about avoiding dose reductions as possible and try to make your case.  I think we as patients should be able to express our desires and the doctors should strongly consider them.  Some doctors are inflexible, but hopefully he will listen and provide you with a good rationale in his dosing protocol.  I was on neupogen for over 40 weeks, most of them 2x per week.  I didn't want to do any dose reductions, nor did my doc, so this was he course of action.  Now that I'm SVR I have no regrets.  Read up and go into your appt prepared to make your case.  Good luck.

[frijole]

Diane
No I would not do a colonoscopy now either but I do wonder why you are having the pain.  You asked about low neutrophils

"I was at that stage wondering if any other viral infection such as flu or low level bacterial infection such as root canal can be a reason for the drop "

I think other infections actually do the opposite - that is, infection causes the WBC to go up as they are needed to fight infection.

I  hope you get an answer as to why neupogen is not used.

[Diana66]

Hey Idyllic

Neutrophils went up to 0.55, platelets at 54 so I restarted interferon shots on my usual day (Thu) but only at 90

So to recap: skipped dose for week 19 but continued with full dose Riba and done week 20 at 90

On Wed I will see the doctor and I will get some answer on why Neupogen was not supported and . Since platelets are not very high I very much doubt that I will ever be back to full 180 even with Neupogen. But maybe I could go back to 135

I also need to hear from him what impact skipping the dose has on the end results and WHY he did not prescribe support although it is available !!!!!

Since when I see him I will be at the end of week 20 maybe they will test my VL again?  I am very low because I am concerned that skipping that dose will make me fail tx and also because I am in lots of pain - stomach, colon and I do not know what it is !!!!

Not sure that is the right time to do an endoscopy/ colonoscopy now with the blood counts I have.

[Idyllic]

Hey Diana! I was wondering the outcome of this? Has enough time lapsed for results and all that? I hope you are doing OK♫

[BoceprevirGal]

  Sending good thoughts your way, Diana~    

[lisa108]

Wish you the best Diana ! My riba has been reduced to 600mg per day because of the low hemoglobine. Doctor says that it will not comprise the result of tx. I didn't  want to reduce the dose but I have to follow the doctor. I understand that you're not feeling very comfortable about this, I know the feeling. I felt the same when reduced riba. We want so much to get rid of this virus and we have been suffering so much with tx.

I hope all goes well for you. Let us know the lab results. Sending you POSITIVE energy !!! :)

[Advocate1955]

"I agree with you that if you were to have a breakthrough or a relapse, it would likely be due to the allele."

I need to correct the statement I made above.  

We don't know currently know that potential treatment failures are due to genetics.  Genetics is thought to be a contributing factor, resistance another, and compliance another.  There are many other factors as well.

Currently we do not know specifically why some people have a viral breakthrough, some people relapse, or some people in other ways fail treatments.  We do know that approximately 21% of treatment naives did fail treatment with triple therapy with Incivek in trial studies.  

For those of you who are currently on triple therapy with Incivek, do not miss any doses of any of your three treatment meds.  If you do, make sure to follow the dosing guidelines regarding when to take your next dose, and contact your treating doctor right away.  I want to clarify that one's chances of SVR are improved with adherence to dosing protocols.  

Advocate1955

[Advocate1955]

Diana, the most likely explanation for your neutrolenia is, in my opinion, your treatment meds. If you get a chance to ask your treating doc, I would be interested in knowing why he does not want to prescribe Neupogen for you to support your bone marrow in producing neutrophils. Obviously your specialists know far more than I do, so I am interested in learning. And obviously your case is more complex than others due to your history of lymphoma. I agree with you that if you were to have a breakthrough or a relapse, it would likely be due to the allele. There is also the unknown component of the resistant strands of virus that mutate either when Incivek is stopped or when Interferon is stopped. There is much still to learn about poor response to Interferon and about resistant virus. But we are getting ahead of ourselves, because you are still on treatment, and you won't find out til later today if you will need to reduce your interferon again. Best wishes, and of course follow the advice of your doctors.
Advocate1955

[Diana66]

And I thank you everyone for the suggestions

I might have been expressed it wrongly but the initial purpose of my questions was to find out if there are any other reasons for neutrophils to bottom except interferon

I was at that stage wondering if any other viral infection such as flu or low level bacterial infection such as root canal can be a reason for the drop

I guess since for the last few days I did not have a fever I can eliminate that

[can-do-man]

"Any ideas, suggestions?"

Since you started this thread and asked, people were kind enough to answer. But you and your doctors seems to have the answers you need.

[rivll]

Wishing you all the best, Diana.

[Diana66]

Hi Advocate

the initial dose reduction on week 8 was the right thing to do and was due to low platelets. Not much to do about that unfortunately. At least I was still in the game to go through Incivek. I am surprised that I bottomed now 2 weeks after I finished it

If tx is not successful, it will probably be because of the CT allele and not due to the dose reduction. It was always going to be a challenge because of the cancer situation and somehow I surprised the doctors doing so well for so long. Not to mention no rash on Incivek

Fingers crossed and will see what results today will be

[Diana66]

Hi Bean

i am on the costant care of 3 or 4 specialists: hepatologist, hematologist/oncologist, renal specialist, general medicine specialist, immunologist, orbital specialist :)

Between all of them I hope I am getting the best I can
We will see in a few hours what the blood counts are coming back at. Was not much to do over the weekend. Tx will not be interrupted but a dose was only delayed and will certainly be reduced, so when I will go back, it will be on 90

Since I am on public system, all these doctors are receiving updates on the same day. Hematologist is aware and is following up my case.

Hepatologist is the one deciding right now and he will be the one prescribing neupogen if considered so.

I did start with a lower neutrophils number at only 1.64 and we always knew that it might be a possibility that it will bottom.

I am not worried about an infection, there is a very low probability for that
I know the stats regarding the interferon dose reduction, not looking great if reduction is under 80% but in reality those studies are for interferon and Riba only. I have not seen yet one on the triple tx

My doctor on the other hand has more exposure to this as he is running some of the majors trials in the world

We will see what his update is today

[Diana66]

There is a reason I treat with a doctor.

If he considers that I have to delay the dose, I am sure this is the right decision as painful as it might be.
Just had my new tests so in a few hours I will know if I can do my shot today. That will be only 4 days delay

Yes, ANC will go up and down and it did, but 0.3 is way to low not to do something about it.

I went down to 36000 on platelets only with minimal dose reduction so my doctor is certainly pushing the limits. Will see what happens today, fingers crossed :)

[frijole]

Diana, from your profile...

"Diagnosed at the end of March 2012 with Marginal Zone Lymphoma Stage 4 with 28% Bone Marrow Involvement"

Diana, are you under the care of a hemotolgoist to monitor your blood, notwithstanding your hepatitis C treatment?  I admit to being too lazy or busy or out of the loop to research right now, but this seems to me to be comorbitity of the highest.  If you have bone marrow issues, is this not increasing the chance that your bone marrow cannot make more white blood cells?  That is what neupogen does - it helps the bone marrow make more blood cells, and at .3 ANC it appears you need that.

I (personally) think that if you are to be successful at this treatment for hepatitis C, you need to stay on interferon.  Are your treatment doctors aware of and capable of making decisions that may also relate to the lymphoma? Did your lymphoma doctor sign off on treatment for hep C?  This is a complicated case. You say it is out of your hands, but I suggest going to the doctor who is treating your lymphoma.

I don't think any of us here can help you.  We can discuss dose reductions vs neupogen, and we can discuss the side effects of both, but I think this goes beyond whether or not you are going to get an infectino.

I wish you success with hard decisions ahead.

bean

[nygirl7]

No dose reduction. Missed dose? Your ANC will go up and down. Please listen to the people above. My doc scoffed at my lowering ANC ... I am svr seven years. That is your goal.

Hang in there. Take your meds. .5 is fine. I was on 69 weeks of 80k Procrit I never dose reduced.

[Advocate1955]

I'm really concerned about your dose reduction and now missed dose as well.  I know that you're UND, but part of the problem with has to do with what happens when Interferon is decreased or stopped.
Wishing you the best with your labs on Monday and hoping that your ANC is coming back up so you can continue or they will prescribe Neup so you can continue.
Advocate1955

[Idyllic]

I have four shots of Neupogen I would send you if possible. I realize you don't know me from Adam (or is that Atom) ...plus I doubt they would make it around the world at the right temperature. I hope you are seeing we are just frustrated on your behalf. I know you have read and researched all this and you are very well informed so you are likely already aware of much of what has been said already.

This was in a 'missed Peg dose" post last month
http://www.medhelp.org/user_photos/show/369543?personal_page_id=1282072

Like Can-do points out much of these guidelines are based on combination therapy. You are breaking new ground.

[can-do-man]

Lets not forget them "guidelines" were made when it was just SOC, and we had a 38% cure rate for geno 1's and that would have been less if it wasn't for the "good" doctors who paid no attention to those...

[Diana66]

Unfortunately it is not my choice. There is not much I can do, someone needs to prescribe the neupogen and at the moment they don't :(

So 17 have relapsed with dose reduction. Out of how many?

Jules, I do not have a choice here unfortunately

[Idyllic]

I can imagine how frustrating this must be right now. I really hope the timing of all this works out and your ANC rebounds enough for you to continue treatment.

I am not sure what you can do since you are right. It is the weekend and on most of the guidelines it does indicate to discontinue PegIFN until resolution when ANC < 0.50.

It's as flcyclist said in his post as well as in this chart
http://www.medhelp.org/user_photos/show/368377?personal_page_id=1282072
________________
The table as well as others are:
http://www.hepatitis.va.gov/provider/guidelines/2012HCV-tables.asp


Hang in there!

[Dee1956]

I hope your numbers are back up on Monday so you can take your shot. or hopefully on Monday they will give you Neupogen.
Since you are already on a reduced dose I would worry about skipping a week.
Saying that your doctor knows your entire story/history so he/she knows what is best for you

I hope the best for you.  My ANC dropped below the 500 several times during my first tx and nothing was done about it.  At the time I did not know anything about it.  It stayed low for a long time after tx, still they did nothing.  I was on INF, RIBA and a polymerase inhibitor (trial drug)

Good luck
Dee

[flcyclist]

http://www.gene.com/download/pdf/pegasys_prescribing.pdf

Tabe 3, pg 5.