Well after a few good months Rachel has just set off back to A and E. Her neutrophil levels have been fluctuating between 0.2 and 0.36 but she has had a cold for a couple of days and today neutrophils are down to 0.16 and CRP up to 84 which is a sure sign she has another infection. I couldn't even take her to hospital since I have to look after the kids. I'm so depressed right now and this is the only place I can vent my feelings. We don't want to live the rest of our lives like this with a simple cold landing her in hospital for antibiotics.

Maybe they will send her home with a big dose of oral antibiotics but my feeling is that it would be best to get her on IV antibiotics as quickly as possible to stop this infection spreading.

:(

Chris

That stinks! As the caregiver your emotional burden must be huge. I am the patient and I think emotionally the problems might be easier for the patient. It must be a very lonely feeling to have your family separated by the disease. I hope Rachel has rapid improvement. You are in my thoughts and prayers.

Scott

Dear Chris,
I am so sorry for the pain and heartache that your wife and her family are going through. I can totally understand why you feel you're at the end of your rope.
But you will find the strength to endure. God never gives us more than we can handle. He will get you through this.
God Bless,
Sally

Dear Chris,

I am so sorry to hear about what you and your family are going through with neutropenia.

Thank you for your reply to my thread a while back on alternative therapies for low WBC. I am trying things very conservatively (I will post a reply with more details on that thread).

You and your wife are in my thoughts and prayers. I hope very much that her neutrophils begin to climb, whether it be spontaneous, or by finding some treatment that works for her.

Kevin

Severe neutropenia
 

Hello Chris,

Please hang in there. Your wife needs you and so does the rest of your family. I just finished reading the thread as I felt connected to what your wife and you are going through. I can definitely relate to some of this from my end. I don't know how my story will help but I too have had pretty low counts of neutrophils since July '12 (mostly fluctuating b/w 200 and 600). But the counts have been essentially at or near 0 for the last two months and I have been struggling with multiple hospital visits.

The real difference that is so obvious here is that your wife hasn't been successfully diagnosed with anything concrete so far, unless I missed it. I'm sure that's one single factor making all this even more difficult since proper treatment options can't be reliably thought of and carried out.

I was diagnosed with Cyclic Neutropenia in '01 and had been taking the G-CSF Neulasta shots every 21 to 18 days which worked out great overall all these time as a routine - until March or April '12 when the BM stopped responding to them and I was soon diagnosed with T-Cell LGL Leukemia. After my system was "reset" or so to speak through a therapy of ATG-horse (anti-thymocyte globulin), I was given a few neupogen shots, prednisone 60mg, and cyclosporin 400mg course over about 3 weeks while in the hospital, the neutrophils finally returned slowly and reached a high range of 6 or so.

But the neuts once again phased out a few weeks later as the overproducing T-Cell lymphs again took over the BM suppressing the neuts - autoimmune nature of the disease. I have been battling the disease and the conditions since then as now I'm on my 3rd round of oral chemo - cytoxan (cyclophosphamide) 100mg daily after cyclosporin 400mg and MTX (methotrexate) 20mg weekly didn't work. I'm still on prednisone though tapering off once again. Fingers crossed that my BM responds with reduced # of those T-Cell LGL's, giving neuts a chance to survive and help rebuild my immune system to some reliable level.

It seems that your wife and I are in the same boat as far as the ANC is concerned - essentially 0. The difference is that I'm given a diagnosis (or so they say) and have targeted treatment options with the two first line of treatments not working in my favor so far. I just don't get it that why your wife's docs are so clueless?? Maybe you need to reach out and consult with a completely new set of oncologists/hematologists - including those in the US perhaps.

Please stay strong and more importantly, stay hopeful, upbeat and positive. I personally know that saying or thinking in that manner is easier than actually practicing it in real...but we have to push harder and keep the faith. I will pray for your wife and for you. Wishing you all the best!

8 Years later - Finally found someone else with exact same issue as me!..
 

Hello, Chris

I was just wandering if you and Rachel are ok? How is her condition? I have only just come across this thread - eight years later.. I really hope you are both ok?

Kindest of Regards, Sarah :)