how often should markers be tested(checked) when having a periodical full blood count? apologies for not keeping uptodate.

[chrismac]

other health problems occurred.been told my mothers markers are not strong,but highly suggestive.is it common practice to revisit,or just look to FBC?

[AussieNeil Partner Administrator]

Generally prognostic markers are checked at diagnosis and prior to commencing treatment as some do change, with some level of checking along the way. What actually happens will of course be influenced by where you live, what stage you are, how active the CLL is likely to be based on prognostic markers and observed change over time and of course the specialist concerned.

I can't help with what happens in the UK, but I've been monitored regularly via a Complete Blood Exam (what you term a FBC and is the panel of tests that monitors your different blood counts) plus a Blood Chemistry Exam. On the Blood Chemistry panel the LD/LDH result provides an indication of how active your CLL is and importantly a rapid jump is an indicator that you may have developed Richter's Transformation. Other important tests show your liver and kidney health. The names of these test panels and what is included and their presentation varies from country to country and between pathology testing laboratories. Other tests I've had include B2M, SEPP, CRP plus one flow cytometry test to check for any changes since diagnosis. These and other possible tests may or may not be useful for your mother to have.

As to the frequency of checking the FBC/CBE, that also depends on your stage and how rapidly your CLL is developing and can vary from monthly or more frequently at times, to perhaps once or twice a year - again depending on all those influencing factors I mentioned above.

Read also this response elsewhere by Cllcanada:

healthunlocked.com/cllsuppo...

Neil

[chrismac]

thanks for the reply aussie neil.there are other health problems involved,most notably thyroid and burning back,which i think was an allergic reaction to steroid injections. her CBE/FBC is presently being checked at 3 mnth.intervals by a haemotologist,which apparently is CLL specialist,so treatment may or may not be needed? the markers are highly suggestive,so a close eye is needed on them...thanks for your advice/support chrismac

[AussieNeil Partner Administrator in reply to chrismac]

Sounds like your mother is in good hands chrismac. Prognostic markers for CLL are still an inexact science and it is reasonably common to have what look to be poor markers and still have a long time to treatment, presumably due to the coarseness of the marker identification and/or the influence of other genetic abnormalities as yet poorly understood. And yes, the converse can also be true.

Based on three monthly blood test monitoring, I'd say that your mother's CLL specialist is not particularly concerned about your mother needing treatment in the near future. Five years ago, I was having monthly blood tests and I now have them every other month and I'm still in watch and wait.

It might help you better understand what your mother's specialist's concerns were about the 'highly suggestive markers' if you could attend the next specialist appointment with your mom and ask for more detail.

Neil

[JerrysGirl3 in reply to AussieNeil]

I don’t understand why my cll specialist sees me every 6 months when everyone else is 3 months. I mean I don’t want to rush into meds. But my bone marrow has never been tested. I was reading results and I saw after five years that I was noted as CLL/SLL. I just had a spleen scan done at a town screening and showed with mild splenography (sp?) and have been feeling mild swelling under my left rib, and have had some cases of night sweats. Not HEAVY DUTY but enough to wake me up to then freeze in the cold and change pjs because I’m sweating. Not frequently. Occasionally. I’m not due to see him again until March. Should I insist on three month visits ? I was diagnosed five years ago and on W&W. The following note was from The PA to my doctor:

“One isn't better or worse than the other. CLL means involving blood/bone marrow, SLL is involving lymph nodes predominantly/only. I think you fit more into CLL. ” and this also:

“All of these tests were run back in 2016.

Flow cytometry did confirm CLL type cells in blood, FISH studies showed 13q deletion, IGHV status unmutated, and NGS panel didn't show any genetic features that we know how they impact the CLL diagnosis (most importantly it didn't show any of the worrisome findings we look for on this panel). 13q deletion is a good feature and unmutated IGHV can sometimes indicate sooner time to needing treatment - so these findings are mixed. Again these are only predictors, the best way to follow the CLL is how we are doing it now - by trending your counts over time and seeing how you are feeling.”

I wish I could understand all of this.

[AussieNeil Partner Administrator in reply to JerrysGirl3]

The essential point is this: "Again these are only predictors, the best way to follow the CLL is how we are doing it now - by trending your counts over time and seeing how you are feeling.”

In our community, a word commonly used to summarise this point is what we term the tempo of your CLL. A quicker tempo CLL requires more frequent observations than one with a slower tempo.

Along the way on our CLL journey, our tempo can change, or symptoms might emerge that could indicate we are closer to needing treatment. Bring up your splenomegaly and night sweats at your next visit and ask if these warrant more frequent follow-up.

My specialist examines my spleen every visit and asks if I've had any night sweats. I've had just one bone marrow biopsy in 11 years and even they were done rarely back then when I was newly diagnosed. They only tend to be done by CLL specialists when they can't work out what's happening from other, less invasive examinations.

After an initial more frequent appointment reviews, mine were extended to 3 then 6 monthly, then I was seen more frequently as I neared the need for treatment. I had blood tests between monthly and 3 monthly or when I was ill. I had them daily while in hospital recently.

Matching appointment frequency with the tempo of your CLL is good management. Thankfully you seem to have a slow tempo. Long may that continue.

Neil

[JerrysGirl3 in reply to AussieNeil]

Thank you !