How does leukemia (or similar diseases) present in blood work?

Hi @michaelamspahr How frustrating and worrisome for you. I can imagine this is quite stressful not knowing what’s going on and not getting any answers. I’m glad to see you’re seeing an appointment at Mayo Rochester. That’s my home away from home after spending many months there after a bone marrow transplant for Acute Myeloid leukemia. It truly is a place of hope…I’ve been in remission over 3 years. ☺️

With your blood numbers not being in the normal ranges, along with your symptoms it really would be in your best interest to see a hematologist. They’re blood specialists who can evaluate all of your blood numbers. This doesn’t necessarily mean leukemia as there are a number of autoimmune diseases and such which can affect blood numbers as well. It is troublesome that you continue to decline. You must feel so miserable!

Have you heard of term, or in any of your blood results, have you seen the phrase blast cells in your peripheral blood? That would be an indicator of leukemia. I want to talk more with you about this but I’m away from my computer until tomorrow. I’ll get some more information from you and we’ll work through this together.
In the meantime, have you been to see a hematologist?

I am not familiar with those terms , or what to look for on my bloodwork! I have attached two photos of some recent blood test, maybe you could let me know if there are anything related to those terms? Thank you for responding!

Good morning @michaelamspahr, Anytime we look at our lab work and see numbers flagged above or below the norm, it sends our hearts racing. I’ve been there. But over my past 3 with hundreds of these lab tests, I’ve learned from experience that our blood numbers fluctuate quite frequently while our immune system tweaks the dials for continued good health.

These latest blood numbers of yours are pretty normal. If you didn’t have the miserable symptoms your experiencing, none of these numbers would raise an eyebrow. You mentioned your ANA was high. That can be an indicator for an autoimmune response. Your platelets are in the normal range, the WBC is just barely below what’s considered normal range. Decreased WBCs count can indicate an immune deficiency, whether due to primary issue in the bone marrow or as a reaction to some bacterial and viral infections.

With your ANA high and your WBC just a tick low, have you been tested for Epstein Barr Virus?

Hi! I have been tested for all infectious diseases, HIV , TB , EBV , you name it! As well as a brain tumor and any rheumatological diseases.

I have started having immense bone and joint pain and fatigue to where I cannot move.

Are there forms of leukemia,myeloma, or blood disorders than can only show up in bone marrow?

My doctors and I are frustrated but my health continues to decline

I know you’ve had a number of labs run and the latest results you shared had the numbers all pretty well in the normal range. A blood test may also show the presence of leukemia cells, though not all types of leukemia cause the leukemia cells to circulate in the blood. Sometimes the leukemia cells stay in the bone marrow.
So it might be a good idea to have a bone marrow biopsy/aspiration. That goes right to the manufacturing process of your immune system. If you had any leukemic cells they would likely show up in that biopsy.
Have you had a bone marrow biopsy?

Also, did you by any chance have Covid? Can you pinpoint a period when your symptoms began? Have you been checked for Lyme’s disease?

Hi! I have just seen my primary care and she is referring me to a Hematologist at the Mayo clinic (Rochester) . Hopefully I will be seen soon for a bone marrow biopsy.

I am being tested for Lyme now, waiting for results!

I had covid a a year ago in September, but I was relatively unwell before then as well.

It sounds as though your doctors have been very thorough in their search for a diagnosis for you. Heading to Mayo’s an excellent idea when you’ve run through all of your options with no answers.
Mayo Rochester is my home away from home so I hope you get in soon and can finally get to the bottom of things. Twenty is way to young to be feeling this sick all the time. You have a lot of living yet to do and need to get back to good health!
If you need any info for travel or lodging in Rochester don’t hesitate ask. It’s a smaller city, very easy to navigate with tons of hotel accommodations. Are you near Rochester?

Hi all! I had posted on here a while back but I have had new symptoms.

Quick recap,
Most symptoms have been in waves they come and go often
- lost 20-25lbs in 2 months (down to 110lbs now)
- joint and bone pain
- extreme fatigue
- shortness of breath and cough
- bruising easily

New symptoms
- swollen lymph node in neck
- itching, peeling and darkening of skin around armpits
- skin is itchy on stomach and arms

The issue is that my bloodwork is normal. Only thing that is off is mcv (high) . I have been trying to get in with a hematologist for a bone marrow biopsy but no one will take me seriously because the bloodwork is pretty normal.

I’ve heard of so many leukemia or lymphoma stories where their bloods are normal but they still have cancer. I don’t understand why doctors keep turning me away because of it.

I obviously don’t want it to be cancer but I have had so many tests to rule out everything else. Any advice is appreciated!!

Hi Michaela, welcome back. I moved your latest post to your previous discussion so that members can see all your posts and the exchange you've had thus far with @loribmt.

I'm sorry to hear that your health continues to decline while bloodwork doesn't give a clear indication why. Have you pursued seeing a rheumatologist?

Thank you! And yes, I saw a rheumatologist and they ruled out anything related!