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to be more thorough and get more testing. Love to get some advice.

February 12, 2024
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Answer Summary

Members overwhelmingly advised waiting on a bone marrow biopsy at stage 0 CLL, sharing that their oncologists relied primarily on blood work... Read more

Members overwhelmingly advised waiting on a bone marrow biopsy at stage 0 CLL, sharing that their oncologists relied primarily on blood work during early monitoring and only ordered biopsies when necessary, often years later or to confirm remission. Several members offered practical guidance, including requesting sedation if a biopsy becomes necessary, asking about Flow Cytometry and FISH tests first, and trusting the oncologist to track key indicators like lymph node size, spleen enlargement, and blood counts. A recurring theme was reassurance that stage 0 is pre-leukemia with many years often passing before treatment is needed, encouragement to live healthy and reduce stress, and confidence that modern CLL treatments offer good options when the time comes.

A MyLeukemiaTeam Member

Dear Leah, it's great that your pneumonia and RSV infect are dissapeared and you healthy from that.
We both have a similar hematologic situation. I could watch the development since 2018, when it was in a pre-CLL-stage.
So I had a lot of time to study the CLL in detail.
Brenda made very good points, the oncologists will tell what the best will be to do.
What I can share with you:
Usually the CLL diagnosis from blood is reliably, so usually a bone marrow should not give additional important information.
This is different for many other hematological entities, where bone marrow diagnostics is essential.
Stage 0 may mean Rai stage 0 (?). If this is the case, this may mean that you have not swollen lymphe nodes, no swollen liver or greater spleen and no low counts in red blood cells or thrombocytes, which are important for hemostasis.

Mostly many or many many years may pass till a specific CLL treatment may be necessary, in some cases there are even people who never need a treatment. Most probably your oncologist will look for your wellbeing rather than for the cell counts of your white blood cells. The oncologist may have told to you that the CLL cells are a fraction of the white cells, the B-lymphocytes.

There are good treatment options for CLL today. In earlier treatments the genetic markers made a difference, this is better in new treatments, which two of our friends talked about.

So I hope I could help a little bit. But there will be good options for you, if necessary, please remain confident, that will help !

All the Best
- Alexander -

February 12, 2024
A MyLeukemiaTeam Member

Good for you. You are pre-cancerous. For now you only need periodic blood testes.

February 12, 2024
A MyLeukemiaTeam Member

Having been through diagnosis, wait an see, infusion treatments and oral treatments, and remission without having a bone marrow test... I'd say, unless the doctor suspects something seems suspicious. My Hematologist gives me the printout from my blood labs, my blood labs track things I've never heard of.

February 12, 2024
A MyLeukemiaTeam Member

My oncologist didn't order a bone marrow test for a year and a half. Then it was to see if I was in remission. I went with what the doctor thought was best. They can tell a lot from the blood work. I wouldn't worry about the bone marrow test just yet, based on my own experience ๐Ÿ˜Š Good luck.

February 12, 2024
A MyLeukemiaTeam Member

Leah3, I think the advice you have been given from our group is sound advice. You oncologist knows best how to guide you. I'm a retired nurse and diagnosed 5/2022 and it appers you are in the pre cancerous stage. You and your oncologist will know when or if you have to proceed and if your numbers change or symptoms to consider. Let us know how this visit goes.

February 12, 2024

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