Small trial suggests the scans might help, but experts aren't so sure
by Wendolyn7 on Tue Jan 10, 2012 04:27 PM
I have been diagnosed with Idiopathic Neutropenia (unknown as to why I have it) I don't have cancer, but my hematologist/ oncologist is wanting to put me on Neupogen. I am just wondering if there is anyone with the same diagnosis as me and if so, what did your physician do for you? Help Help Help
by jennie61071 on Mon May 14, 2012 09:14 PM
I as well have Idiopathic Neutropenia (unknown as to why I have it) I like you do not have cancer. Depending on how low my Neutrophil count is(under 1000) I receive a Nuelasta Shot. Just one side effect that I get and that is bone aches. Lasts about a day or so then it subsides. Have you taken the Neupogen?
by Wendolyn7 on Mon May 14, 2012 09:30 PM
I have tried Neupogen, and to no avail doesn't work at all. :-(
Do you mind if i ask how old you are?? I am in my early 40's but was diagnosed at the age 39.
by eternalife on Tue May 15, 2012 12:12 AM
Can you tell me what constitutes idiopathetic neutropenia, ( what is the value for the white blood cell count).
by jennie61071 on Tue May 15, 2012 12:34 PM
I am 40 almost 41. I was diagnosed in 2007. When I was first diagnosed I took steroids and that did not work. I have had my spleen removed that did not work. So far the only thing that works for me is Nuelasta and that lasts about 2-3 months then I have to have another shot. They are very costly but if you have a great doctors office they will help you in any way that they can to get you financially set up with help. They would like for me to try Rotuxan. The downside is that it is very costly and experimental and my insurance will not cover any of the cost. I have written letters to the manufacturing company of Rotuxan and letters to state legislatures with no luck. I have fallen through many cracks due to the fact that I do not have cancer and that is what they associate with Neutropenia. I am thankful that Nuelasta works for me currently.
by jennie61071 on Tue May 15, 2012 12:40 PM
I have been told that Idiopathic Neutropenia is when there is no explanation as to how you got Neutropenia. They look at the Absolute Nuetrophil Counts. The normal level of neutrophils in human blood varies slightly by age and race. Infants have lower counts than older children and adults, and African Americans have lower counts than Caucasians or Asians. The average adult level is 1500 cells/mm3 of blood. Neutrophil counts (in cells/mm3) are interpreted as follows:
by eternalife on Tue May 15, 2012 07:46 PM
My bloodwork shows I have chronic low WBC, but the hematologist told me the level is not so low he is concerned. He labels it mild neutropenia. It is 1.4 , the lowest range is to be 1.5, so I am just below the normal range. It bothers me because he also said that he sees cancer patients that are severely low .
Well, good news , I am not a cancer patient, but just wonder if there is cause for concern.
by jennie61071 on Tue May 15, 2012 07:59 PM
I worry evey day. I have a 12 year old and I want to make sure that I do eveything possible to be here when she is old. I wish that I could complete the Rotuxan but I am a single mother and I have been told that the Rotuxan would run around $15000.00. Obviously that does not fit in my budget. It is a scary thing to have hang over your head. My question to you is do you know when your WBC is low. Do you have any symptoms that let's you know when you are low? Feel different? We are both blessed that we do not have cancer. But I also worry that I will have more infections. I have be hospitalized three times since diagnosed with Neutropenia. Once for the spenectomy, once because I had an infection in my tear duct and the last was to re-route my tear duct due to it being blocked.
by Wendolyn7 on Tue May 15, 2012 11:56 PM
I worry also. My physician has not extended my treatment as much as yours. I get regular lab work and the a bone marrow bx every year. I'm not sick alot, but I do get bronchitis every few months and have a tendency to run a low grade fever. My worst complaint is being tired all the time. I work all week and by the weekend do absolutely nothing. I have been told there is nothing that can be done except to wait it out. My white count stays about 1.4 to 1.8 on a continual basis and never increases even when I was on the Neupogen.
by eternalife on Wed May 16, 2012 01:10 AM
Hi Wendy ,
Last year on 3 different blood tests from March - May, my neutrophils were 1.4, below the range of 2.0 that is expected.I was so tired in Feb 2011, I was off work for the month. This year last month, the neutrophils were 1.6 , yeah... the WBC always rides below 4.0, generally 3. 5 . Why did your doc want to put you on the Neupogen.. what is that. I am not at work right now, cause my husband has esophageal cancer, but regardless, I too when working by the end of the week am exhausted like a dog... panting... I do not understand how if you lie just outside the normal range.. there is no concern.. at least from my doctor... What do you mean about waiting it out.. what are we waiting for.. I have had shingles twice, mono once and pneumonia over my years.. obviously I have trouble dealing with infections... if I get an infection.. it lasts a long time and wipes my out.. I have bronchial problems sometimes and have to take a puffer.. this is ``normal
What do you think
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