Low risk?

[Pinkdark2018]

What exactly does having low risk disease mean? I have progressed to Stage B during the pandemic and have only been diagnosed 2 years now, but am still told I have low risk disease. It doesn’t make sense.

[lankisterguy Volunteer]

Hi Pinkdark2018, -

I will try to guess at some answers to your question, but it would help us if you would follow tip #3 on this Pinned Post healthunlocked.com/cllsuppo....

Knowing your country, health system, your medical background and CLL history from your profile would allow us to provide more appropriate answers.

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Since you are in the UK (a guess from your word choices) and not nearing treatment (another guess), you likely have not had a FISH test or a IGHV mutation test. If the results of those tests indicated 13q deletion and Mutated status, then you would likely be considered low risk.

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If you were being evaluated for starting Venetoclax and your ALC / Lymph# was below 25 and you had no enlarged nodes you would be low risk.

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So if the two above assumptions are correct, then your GP or Consultant is considering a modest WBC / ALC / Lymph# below some arbitrary number like 25 or 50 and your number is not rising quickly. Your nodes, spleen etc. are not enlarged, and you have no B- symptoms and no frequent infections.

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Len

[Pinkdark2018 in reply to lankisterguy]

Thank you for your reply. I know the given circumstances around why I am considered low risk, however, low risk of what exactly?

[AussieNeil Partner Administrator in reply to Pinkdark2018]

Low risk of needing any intervention because of your CLL, i.e. not likely to need to start treatment in the forseeable future, or require additional medical support, such as hospitalisation, for serious infections.

Neil

[Pinkdark2018 in reply to AussieNeil]

Ok thank you.

[JigFettler Volunteer]

Low risk disease, in UK medical speak, as AussieNeil states, suggests your Drs don't anticipate you will have a troublesome time with your CLL. Your road won't be rocky, is the expectation. I agree its ambiguous.

My advice is that you ask your Drs, which ever gave that opinion, at the next opportunity, to elaborate and explain to you. There should be no need for you to carry this as a burden or a worry.

Keep in touch.

Jig. (UK)

[Pinkdark2018 in reply to JigFettler]

Thank you for your response. I have had 2 consultants state I am low risk. First at diagnosis and then a second when I moved house. I pottered on fairly happily, once I’d come to terms with having the condition in the first place, I’ve had symptoms for a year prior to diagnosis, then during this last year I developed something new. Result ....tests, a consultation, further tests and phone follow up. Treatment mentioned on 3 occasions but because of Covid and I have low risk disease I can wait. Initially I took low risk to mean this is it and it shouldn’t cause me any problem. Now still low risk but??? My next consultation is by phone so I will try and get some answers but they seem monopolised by Covid. I believe they listen out for key words indicating a significant change in condition and discuss vaccine etc and then give another appointment. I have gone from community monitoring to 3 month appointments and yet still “low risk”.

[JigFettler Volunteer in reply to Pinkdark2018]

I really understand. There are key issues on the CLL journey that they will be listening out for. No need to worry as such - for the Hematologists should ask you specifically. Fatigue, weight loss, infections are amongst them. Lymph node bulk, Lymphocyte count and Hb and Platelets are others. No hard fast trip wire to treatment.

I stalled my FCR chemo 5 months, as a got a 2nd opinion. Best thing I did. I had FCR and its been good for me. When I sought to stop after 4 cycles, my regular local Haematologist used my 2nd opinion Haematologist to persuade me to to complete the full 6 cycles. I did and he was right.

I hope you feel able to bring your concerns to the Forum - for a sympathetic diversity of support. We are not Drs and would not seek to direct your choice. CLL is a complex and varied condition, often there is not a "right" answer.

Stay safe.

Jig

[Pinkdark2018 in reply to JigFettler]

Thank you so much for your response. I do get a lot of support, indirectly, from the forum. It gives me some confidence.

Stay safe