IDK NEED HELP

[Family2017]

Got test results back from Hemoglobins. Main issue Igm is high 989 range for lab is 70-775.

What is the level indication

[cllady01 Former Volunteer]

I know you have said you were diagnosed, but it isn't clear to me what your diagnosis is. Do you have Chronic Lymphocytic Leukemia (CLL)?

I ask because it is most important that the question you ask be given as relevant to your diagnosis. Also your treatment last time you posted did not seem to fit the profile of what would be being used to treat CLL.

The one thing that keeps cropping up in regard to frontline BR treatment followed by Rituxan maintenance is that the maintenance time is considered progression free time and a rise in IgM can possibly (I'm not a medically trained person) mean the progression free time is over--another treatment may need to be proposed.

[AussieNeil Partner Administrator in reply to cllady01]

Hi Patti,

Further to Cllady01's reply, you've only supplied one blood test result. Its hard to know why that slightly high IgM could be happening, particularly with no other context. It's far, far more usual to have a very low IgM result than a slightly high result with a CLL diagnosis.

In your last post of 4 years ago, I expressed my concern at your non-typical treatment for CLL. I think you'd be reassured if you arranged for a second opinion with a CLL specialist, or at least someone who has lots of leukaemia/lymphoma patients. If you can't easily find someone where you live, because you live in the USA, you are able to request a free review with a CLL specialist through the CLL Society's Expert Access program. cllsociety.org/cll-society-...

I can highly recommend this.

Neil

[Family2017 in reply to AussieNeil]

Hello AussieNeil, Again as always thank you for the link and advice. I am lost and seeking answers. My new Hem/Onc 11/21 at last appointment was more forthright and sincere. However, l leave still wondering about my CLL health status. At the last appointment she stated I was no longer in (Hematologcal remission). Therefore, I am stage 0 - 1 I guess never really explained other than my lab results and I am experiencing symptoms. For example: enlarged lymph nobes in neck and night sweats.

So, l won't go on about the situation. Until l post information. Dr called and said that the lgm was high and waiting for remainder of CBC Labs.

I will follow-up with a CLL splst via the link.

Thank you kindly!

[Family2017 in reply to cllady01]

Hello cllady01. I am waiting for the rest of medical records to be uploaded via hospital. However, the Igm results were recent.

My Frontline BR treatment was in 2016, (3 treatments) then the Rituxan maintenance (2). Due to getting sick Onc/Hem postpone. Yes, from what I was told l was diagnosed with CLL. Once diagnosed there was discussion of either FCR or BR me and family decided at that time that BR was best due to age and exsiting comorbidities. Once records have been obtain l post pertinent information.

Thank so very much for replying to my request.

[LeoPa]

Will you fill up your profile with your disease history?

[Family2017 in reply to LeoPa]

Hi, LeoPa l am waiting on medical records. Once obtain l will post pertinent information. Thank you for replying to post.