Neutropenia

[Jill2008]

My absolute neutrophil count recently dropped to .9. I was considering going back to work, but with an ANC this low, I don't know if I should be going out in public at all. Any advice?

[Birgitta-A]

Hi Jill,
I should be very careful - you know if you get an infection your platelets will probably decrease too . They are low already.

In the clinic where I am treated I can ask the nurses to control for example neutrophils every day if the neutrophils are very low. Then I ask for more Neupogen if I need more than my ordinary 2 injections/week. Last summer I took Neupogen every day during 9 days because my neutrophils were very low due to treatment with an iron chelator not approved in the US.

Neutropenic fever/sepsis should be prevented if possible - it is dangerous for you and will cost a lot to treat.

Hope your counts will improve!
Kind regards
Birgitta-A

[Jill2008]

Hi Birgitta!
I have been in a "wait and watch" mode for over a year now and my counts just recently began to drop again. I don't have another appt. at Stanford until Jan 15th, but I suspect my doctor will want another BMB and will possibly recommend going ahead with the SCT. He mentioned starting me on Revlimid to prolong the need for a transplant, but I'm worried it will lower my platelets even further and I heard it is very expensive.
Jill

[Birgitta-A]

Hi Jill,
Then we hope that your neutrophils will improve without Neupogen or similar drugs ! Jan 15th is coming soon.

As far as I understand patients with isolated 5q- have the best response when they are treated with Revlimid but patients with other chromosome aberrations can respond too.

If your doctor recommend a SCT you have to take very good care of yourself and perhaps not go back to work but eat well, sleep well and take exercise that suits you .
Kind regards
Birgitta-A

[Chirley]

Hi, It looks like different doctors have different ideas. My haematologist is happy if my ANC is above 0.5. I have been told that it's okay for me to work and socialise and do what ever I want as long as it's above that level. Personally, I get a bit worried when it's under 1.0 because I work with people who have infections. These infections can range from H1N1, VRE, Norovirus, HIV, TB to the always present MRSA.

At present my ANC is 0.8 and I redeveloped cellulitis of my ankle, which I had in September and had to have weeks of IV antibiotics. I also developed and abcess over my medial ankle bone whch I had to have incised and drained yesterday (without any kind of local anaesthetic). The doctor used a scalpel and made (2) 1 centimetre cuts and I think I might have squashed the nurses hand from squeezing so hard. I am on 2 different types of oral antibiotics and have to go back tomorrow to see if it needs to be drained again. I'm not looking forward to it.

I think I would be happier to have Neupogen if my ANC is less than 1.0 (which it always is) but my doctor says that it may cause me to start producing leukaemic cells so I feel quite confused.

I hope the start of 2010 isn't an indication of what's going to happen for the rest of the year. First I cut my hand washing a jug and had to have 6 stitches (never had them before while I've been awake, at least I know now that they don't hurt) and then the ankle.

Best of luck to everyone for the New Year.

Chirley

[Birgitta-A]

Hi Chirley,
Yes, we really do get different treatment. You know when my dx was myelofibrosis I didn't get Neupogen though my neutrophils were 0.3 after 3 infections because the bone marrow is supposed to recover much better in myelofibrosis patients. Then I got neutropenic fever and a new BMB showed MDS.

I had probably had this disease from dx because I don't have spleen enlargement or symptoms like fever, night sweats, weight loss and fatigue. Since then I have got Neupogen mostly 2 injections/week. I avoid everything that eventually could give an infection and havn't been infected since the summer 2007 (knock on wood).

In Sweden the doctors don't think that Neupogen or similar drugs increase the risk for leukemic transformation. They have done several long term follow up studies. You could look at page 55 of this dissertation from 2008.
http://diss.kib.ki.se/2008/978-91-7409-100-7/thesis.pdf

Too bad with the cut in your hand and cellulitis .
Kind regards
Birgitta-A