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Low neutrophils

My husband Mike went to the hospital on Friday with a nasty bruise we were worried about. That was fine but when taking a blood sample they found that his neutrophils count was 0.91. He is on the spirit trial on 400mg Glivec a day and interferon injections once a week. He was told to stop all medication and come back today for another blood test as the level was below 1.0. The test today showed that it has gone down further to 0.71 in four days which has really worried us. He has been told that it is to do with fighting infections and asked us all sorts of scary questions about symptoms Mike might be having. He now has to go back for another test Friday and stay off his medication. He is back at work full time now after being diagnosed and I am so worried he may get ill and catch an infection. The Dr we saw wasn't very confident sounding and didn't seem to know an awful lot about CML so not able to ask him much. Has any one had this happen?, I thought that they would just give him a blood transfusion to put the levels up to normal. Can any one advise me?

Thanks
Sara

He had his last results a few weeks ago at a 2 log reduction
Sara

Hi Sara,
Our lad's neutrophil counts went quite low a couple of times during the first 2 or 3 months after he started on Glivec. He was told to stop medication for a week or two and then restart. Eventually the Doc decided to reduce his dose slightly. He is now on 200mg a day, but is only 13 years old so not taking adult quantities. His counts have been stable for the last few months.He didnt suffer from any infections, but was lucky that at that time they were doing weekly blood testing and caught the neutrophils before they got below 1. All the best - hope Mike stabilises soon!

kestrel

Hi Sara
It does happen that Glivec suppresses the wbc and then you have to stop the medication and allow it come back. Since Mike is also on IFN this makes it even more likely. He may have to end up dropping the IFN and to carry on with the Glivec as quite a few patients have done. Where is Mike being treated ? You say his doctor doesn't seem to know much about CML and this worries me as Mike should be monitored by someone who fully understands the disease and the drugs he is taking. Mike's wbc will recover but the doctor will have to decide what to do if this happens again as Mike's drug regime will have to be adjusted. He is obviously responding to therapy with a two log reduction. Keep us posted.
By the way at 0.71 Mike should be ok, it is when the neutrophils drop below 0.5 that he should really abstain from going to work. A blood transfusion would only help his haemoglobin levels not the white blood count.
Best wishes
Elizabeth

Thanks for your comments Elizabeth and Kestrel. Mike is being treated at Nottingham City Hospital. He was in day case as his consultant Jenny Byrne was away, so the Doctor was an SHO on duty. Have spoken to a Senior Nurse today who has spoken to Jenny he is going back Friday morning for a further blood test and to see if any further action is required. So now feel alot happier because I have got answers to all my questions. Mike puts it out of his mind most of the time it is me that does all the worrying, I think sometimes he thinks he is invincible.

Sara

Hi Sara

I’m also on the SPIRIT trial with the 400 mg Glivec and weekly IFN injections, and was in a similar situation to Mike. In my case, however, the infection came first (in my throat and chest) and I ended up in hospital for 10 days – I was neutropenic and also had a blood transfusion. I could hardly swallow anything during that time so went off the Glivec, as well as IFN. I resumed Glivec once out of hosptial and now 3 months later I am only just back on IFN (at moment only half dose fortnightly). The good thing is that my PCR didn’t seem at all affected by the whole thing (currently at 0.002) but it wasn’t a pleasant experience. If you think Mike's neutrophils are compromised I would recommend being vigilant about potential signs of infection (sore throat, rise in temperature etc.) and then seeking immediate medical attention as my experience shows that things can get out of hand pretty quickly.
Good luck – I hope you find that Mike’s neutrophil levels are soon back up and if they aren't, a short Glivec or IFN may be all that he needs.

Sarah

Sorry - the last line of my post was meant to say that a short Glivec or IFN holiday may be all that Mike needs.
Sarah

Hello Sara, I am not sure if your doctor is acting a bit hasty or not? I am not a doctor just another CML patient.
I have very low ANC down below 400.. I am not sure if your husband's count is 910 as figures in Nova Scotia, here they add 100 to the count.
The way they figure ANC is WBC X neutrophil X 100, or at least that is how mine is done. I have been as low as 290. or .29
and I do have to be careful, My doctor feels, keep the drugs coming, hoping he will get results. I suffer from all my blood coutns being low. You and your hubby can see my diary at the bottom of my diary page,I have all my counts for the world to see HA... I did this on request of people just new to CML and Zavie from the North American CML2 group. I'm feeling fine no problems even with low ANC and Low Platelets and HGB etc etc... This is a quote from another web page "However, low counts do not always lead to infections. Nearly all people on chemotherapy have low counts during chemotherapy. But only a few people develop infections." This is the webpage with explanation http://lymphoma.about.com/od/issuesduringtreatment/p/bloodcounts.htm

here is my site with my counts. http://easyskip.tripod.com
I hope my diary of counts will reassure you and your husband
that low counts can be managed. I would suggest your doctor consult with someone..Going on and off drugs is not a great idea. I am no doctor just a long time suffer
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dx' 1978 29 years