I went to the ER the other day for pain in my liver and spleen areas. I guess the hospital is use to people seeking pain meds. I won't even take a vitamin. After sitting in the ER waiting area for over two hours and after labs I was called back to triage and was told my WBC was 1.8 and immediately rushed to the back. Doctor came in and said I was a medical mystery and to follow up with my oncologist which the appointment isn't until July. My regular oncologist has left the cancer center and I'll see a new doctor. I had a referral yesterday for a second opinion and he wanted to his own labs. My WBC was 1.3 and I'll go back to him in a week. Do I need to be concerned? And I have a lot of low labs and some high. I have been trying to get a referral to a CLL specialist at OSU but the cancer center here will not fax my records and that is the only was OSU will take them.
WBC: I went to the ER the other day for pain in... - CLL Support
WBC
You need to be clear what your neutrophils and lymphocytes are specifically. You mentioned previously that you are on treatment so if your lymphocyte count is low had is to be expected. But a low neutrophil count would have more immediate concern.
Treatment can cause both or one of those to be low.
Typically CLL doctors pay attention to a neutrophil count of less than 1. It didn’t necessarily mean straight to hospital unless you also get a temperature. Certainly have a low threshold for going back to an a and e if you get a temp / symptoms of an infection. And if it’s below 1 you’d be wise to consider implementing things like a neutropenic diet.
But you will need a more urgent follow up with repeat bloods to be clear what is happing. Try and get a copy of your blood results to understand what the breakdown is.
Call your treating specialist and ask for help and advice on this.
All treatments was stopped in January because they was not doing what the Dr expected it to do.
Please change your doctor. !
The oncologist I had told me on May 1st he was leaving and my next appt is July 17th and I would be assigned a doctor and then they would give me a permanent one. I am trying to find a CLL specialist and there are none in my area. I've tried.
I think anything over 4. Is considered a normal WBC. Please correct me if I’m wrong ( Admin) anything under 1.5 is considered neutropenic & anything under 0.5 is severe. The worst I have been is 0.6. I went on prophylactic antibiotics & steroids in readiness for further treatment. Subsequently it rose to 1.1, 1.3 & now stands at 1.7. You do have to be really careful if you are neutropenic - I am so susceptible to opportunist infection.
It’s important to distinguish between the WBC and the lymphocyte count. As the most frequent two types of white cells are neutrophils s and lymphocytes the WBC is a combination of the two. So you’d want your lymphocytes to be low if you have had treatment. But having any neutrophils is better than having none. So the more you have the less the haems get concerned. For sure anything less than 1 raises an eyebrow for them and anything less than 0.5 more concern. You are also right that neutropenia does increase your risk of bacterial infections especially pneumonia and food Bourne illness. But note that we are also more susceptible to infection even if we don’t have low neutrophils.
Mamawof25, you don't appear to be having adequate health care, particularly if the reason for your WBC is neutropenia - and it has to be. Neutropenia is defined as under ~1.8 to 2.0 (depends on lab), so even with a WBC of 1.8 you had to have been neutropenic. Stages are:
Stage 1 1.5 to lower reference limit
Stage 2 1.0 to 1.5
Stage 3 0.5 to 1.0
Stage 4 under 0.5
I've even seen a stage 5 mentioned on one occasion (under 0.25).
So Mamawof5, as everyone is saying, you need to find out your neutrophil count and see how low it is. Your risk of infection from bacterial and fungal infections goes up dramatically as your neutrophils fall. Below 1, febrile neutropenia/neutropenic sepsis becomes a concern. Any symptoms and get to ER ASAP. If you don't start IV antibiotics promptly, there's a high risk of death and deterioration in your health can occur rapidly. Neutrophils have a very small half life (a few days). If your bone marrow has stopped making them, you might be stage 1 or 2 one day and stage 4 in a week or less. Happened to me and I've had several emergency admissions either for febrile neutropenia or because I had skin infections and was at serious risk of developing it.
With a WBC of 1.3, it would be almost impossible to have a neutrophil count above 1.0. You should doing all you can to stay away from anyone unwell (2m or 6 foot clearance). Wash your hands well before touching around your eyes nose or mouth. Treat any cuts or scratches with antiseptic such as betadine. Check your skin daily for any infections and avoid any food that could have high bacterial counts.
Stay safe and well,
Neil
OSU as in The James @ Ohio State? Excellent place. Try to get appt with Dr. Byrd. Get copies of ur records/tests and fax them yourself.
1.5 is neutropenic. That is a concern.
What state do u live in? 💕
Good information and advice from Adrian and Neil. I agree with GMa. Get copies of all of your records and keep a file for yourself that you can add to after every appointment so you can access them whenever you need to.
In the US the HIPAA Law guarantees you the right to all of your medical information including doctors’ notes. You can be charged a per page copying fee, but you can’t be refused! You are supposed to be given a copy of how each doctor or center implements the law.
You definitely need a new doctor now!
Mama, in the meantime I think you should limit your risk of exposure to anyone who might be sick. Can you get on the portal for the lab that does your blood work? Go to your hospital system or lab website and try to request access to the patient portal. Your blood work should all be there. My other suggestion is that you should take your temp every afternoon. If you don't feel well or if you get a temp over 100.4 go to the ER immediately. If possible call an ambulance. You have to say that you have leukemia and you think you may have sepsis. If you go by ambulance you will get right in. If you go to the ER desk, tell them right away and emphatically that you are at risk for sepsis. They should take you right away and you also can avoid sitting in the waiting room with other sick people. Call the oncologist office and be insistent that they see you asap.
Yes you should be concerned and be seeing a Hematologist or Oncologist as soon as possible. I don't want to be an alarmist, but if I had this WBCs as low as yours, I would be beating down someones door. The ER is the wrong place to go. Find a cancer center ASAP and demand an earlier appointment. Here is an article you may not have seen---copy and paste it into your browser. Good luck and God bless. cancer.org/treatment/treatm...
Mamawof25,
As already mentioned in responses, you need specifics of what the low numbers represent. If the low count equates to neutrophils being below acceptable range, you are at risk of infection.
It is not uncommon for a clinic to not fax records because of the size requirement, however, you can go to the admin desk and request a release of record form. The form will ask you to state the parties who the records will be released to. After you sign it, take a copy and fax or email it to the physician of your choice. After you verify that the form has been received then you can proceed the followup with clinic of choice.
JM
WBC
Good news
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very high WBC
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