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Forum Name: Hematology Topics

Question: Neutropenia


 edcarta - Sat Aug 13, 2005 8:00 am

2 years ago, my primary care physician ordered routine blood work. My CBC showed an absolute neutrophil count of 0.5 with 1.4-6.5 being the established normals. My platelet count was slightly low at 135,000. Subsequent CBC's sometimes also showed a drop in Hgb and Hct (but within normal range). A hematology oncologist found no significant results in a CT scan, serum protein electrophoresis, ESR, flow cytometry, CMP + LDH. With neutropenia as the only diagnosis, the oncologist suggested bone marrow aspiration, but also said that I may just be on the low side of the "bell-shaped curve" which constitutes "normal". I have not yet had a bone marrow aspiration, but my primary care doctor is encouraging me to. I have also recalled when reading about neutropenic conditions that I have worked with such chemicals as benzene and toluene with no real protection, radioactive Iodine-125 used to iodinate proteins used in hormone assays and I have had numerous mammograms trying to identify microcalcifications in my breast. I will see the oncologist on August 24 to discuss whether I should still pursue the bone marrow aspiration. I would love to hear what another Dr. might offer about my case.
 Theresa Jones, RN - Sat Aug 13, 2005 9:30 am

User avatar Hi edcarta,
I am not a physician on the forum, but I would like to give you an opinion. In some people, mild neutropenia exists without any specific disease process or cause and is considered normal. I would however, strongly encourage you to have the bone marrow aspiration to identify if a disease process, or chemically induced condition exists.
Sincerely,
Rntdj
 edcarta - Sat Aug 13, 2005 11:48 pm

Thanks for the info, Rntdj!
edcarta
 Theresa Jones, RN - Sun Aug 14, 2005 8:53 am

User avatar Hi edcarta,
Best wishes and I hope you will consider posting a follow up if your time would permit doing so.
Sincerely,
Rntdj
 edcarta - Thu Aug 25, 2005 6:36 am

I went to the hematologist yesterday to discuss having a bone marrow aspiration, but she is more concerned with a lymph node under my right arm. I recall her mentioning "a node" on my last visit, but this time she wants a surgeon to biopsy it after she sees another mammogram. ( I have not mentioned before that I had a needle biopsy of a lump in my right breast and a needle localization biopsy of microcalcifications in my left breast in May of 2004). All were benign, but I ended up with a seroma and infection of the left breast possibly due to my neutropenia. Anyway, when I thought I was seeing the end of this, things seem to be going in a different direction. I'm definitely bummed out.
 edcarta - Fri Sep 30, 2005 10:58 pm

Last week I had an excisional lymph node biopsy and Wednesday a bone marrow aspiration and biopsy. My oncologist called today with my diagnosis. Hairy Cell Leukemia. 2 1/2 years after the first abnormal CBC. I start Chemo October 10th. Thanks Rntdj for encouraging me to have the bone marrow done.
 Theresa Jones, RN - Sat Oct 01, 2005 10:43 am

User avatar Hi edcarta,
I am so glad that you had the bone marrow biopsy done. I will keep you in my thoughts and prayers for you to be granted strength, guidance, understanding, and encouragement. I hope that you will keep us posted on your treatments and progress. Good Luck and we are behind you edcarta!
Sincerely,
Rntdj
 Dr. Tamer Fouad - Sun Oct 02, 2005 12:43 am

User avatar Edcarta,
Good luck with your chemotherapy! What regimen are you going to be taking?
As you may already know, hairy cell leukemia is a chronic leukemia with dramatic response rates to several forms of chemotherapy. One of two drugs are usually chosen as initial therapy: either cladribine (Leustatin) or pentostatine (Nipent). They have response rates in the range of 80-90% (meaning, 90% of patients respond favorably to this form of treatment). Most patients remain disease-free 10 years after treatment with these purine analogs. Other viable options for treatment include: Interferon alfa and splenectomy.
Your neutropenia could be expected to increase initially, especially with cladribine as a side effect to chemotherapy.
Please keep us posted and best wishes for a quick recovery!
 stumpedNSJ - Mon Oct 03, 2005 8:07 pm

Dear Edcarta,

I have been following your post since you recommended I visit http://www.Neutropenia.ca and my heart goes out to you. You must be, in some crazy way, relieved that you finally have an answer. Best of luck with all your treatments and may find the stregnth to get through this trying time.

Regards,
StumpedNSJ
 edcarta - Thu Oct 13, 2005 9:07 pm

Today was Day 4 of my 5 day 2hour infusions of Cladribine (2-Cda. I'm getting 20 minute infusions of Kytril and Decadron for nausea and inflammation and doing quite well. On Saturday I will receive a shot of Neulastin to boost my WBC and then I'll have a CBC every Monday to watch for remission. I'm thankful there are such great treatments out there and I'm diagnosed at about the mean age of 52 (I'm 53). I am in a very special group as it is very uncommon in women. I've heard of one person who has had the disease for 30+ years, but is now relapsed and in need of the more experimental BL-22. I am already a political activist and foresee supporting the HCL cause. Because it is rare, there is no government funding for research programs. Thanks for your interest. I have found great support in another forum specifically for HCL.
 Theresa Jones, RN - Fri Oct 14, 2005 8:56 am

User avatar Hi edcarta,
I was thinking about you this morning and am glad to see an update :) I am happy to hear that you are doing well with your treatments and I hope that it continues this pattern. Congratulations on your activist efforts to make a difference. Our best wishes to you :)
Sincerely,
Rntdj
 edcarta - Sun Oct 16, 2005 11:01 am

Hello to anyone watching this forum,
And thanks again to Rntdj. Are you an oncology nurse? You seem to have a wealth of knowledge. I'm done with my Cladribine infusions, received a Neulasta shot yesterday and am starting to have a mild fever and joint pains as the malignant cells are being killed. I feel confident this treatment is working. It's a little tougher than what I presented to friends and family, but it feels like everything in my life thus far has brought me to this point and I will have the strength in me to do this. My husband talks about how we'll look at this as we grow older--the before and the after. When I'm relatively pain free, I feel a strange euphoria. Probably just "chemo-head", ha ha!!! This is a whole new world.
 Theresa Jones, RN - Mon Oct 17, 2005 3:38 am

User avatar Hi edcarta,
Actually I am primarily a medical/surgical nurse although I do have many oncology patients on my unit. As for knowledge, sometimes I feel like a very small fish in a very large ocean with so much to learn :) but thank you. Sometimes illness gives you a different outlook or view so the approaches, decisions, and appreciations are taken less for granted (if that makes sense). I am glad to hear that you have a good support system with your family as this is an important encouragement. Now, since you are fevered, and have recently finished your chemo, you should promptly notify your physician and I will watch for future posts from you about your progress :)
Our best wishes.
Sincerely,
Rntdj
 edcarta - Thu Nov 10, 2005 5:28 am

Hello,
I am 26 days post 2CdA treatment for Hairy Cell Leukemia. I feel great and after receiving a "return to work with limitations" letter
from my oncologist on October 27th, I did return on October 31st. I work in a hospital laboratory and the limitations were not clear nor was there a defined time line for when the limitations would cease. When I asked for clarification, my oncologist wrote a new letter which I received on Nov. 9th which says that I may return to work "when my blood counts recover in 1-2 weeks". I work part time and have already covered 3 shifts before I got the second letter. My WBC on October 31st was 1.9 with Absolute neutrophil count at 0.7. Nov. 9th , WBC was 2.2 with Absolute neutrophil count at 0.7. Before I was diagnosed, my absolute neutrophil count was as low as 0.5 and I was never restricted from work.

I feel I have had no guidance in this matter. I'm sure I'm not the first person who has returned to work after chemo, so why is this so difficult? I work for a small hospital in a large hospital system and I think they are already frustrated with the lack of clarity on my return to work. Our laboratory is currently short staffed which is why I planned to return to work as soon as I could.

I don't want to put myself in jeopardy, but I'm so frustrated that I'm not being helped in this matter. I called my oncologist's office when I received the second letterand heard nothing back. What can I do?
 Theresa Jones, RN - Thu Nov 10, 2005 6:28 am

User avatar Hi edcarta,
Even though your cell counts were low prior to the chemotherapy the reason for a little more concern after beginning a regimen is because you may be even more susceptible to infection. Chemo not only destroys the cancer cells but some of the "good" cells as well. I would suggest that you make a specific list of requirements needed by your employer, for instance, how many hours you may work, what activity restrictions are evident, etc. As for a time frame, this could be listed as a preliminary time frame pending on the chemotherapy course and adjusted or changed as necessary. Take the list into the physician's office or call and speak with the nurse (not the receptionist) etc., as sometimes messages may get delayed or undelivered. In my opinion, the physician is probably unsure of exactly what your particular employer is expecting. I hope this was somewhat helpful and we are glad to hear that your treatment is going well :)
Sincerely,
Theresa Jones, RN

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