Am I worrying over nothing

[buzzybab]

Hi can anyone give advice on my last bloods Hemoglobin 121 WBC 128 Platelets 262 Neuts 6.4 LDH 238 Lymphocytes 119 my hematologist said my count doubling time is 8 months jumped up quickly could feel spleen enlarged and nodes . Done sample for FISH ,virology and Pneuumovax. Said I might need treatment in near future and gone from 6 monthly to 8 weeks. The only other symptoms are fatigue and the permanent cough and cold since October.

[Newdawn Administrator]

Hi Buzzybap,

You may find this useful in explaining the indicators for the treatment discussion to start with CLL. Your levels are generally ok and little change in your platelet level since the last figure you gave 10 months ago. Once over the 30 level, a doubling time of 6 months in the ALC prompts greater monitoring but not necessarily treatment unless other factors are evident. Your platelet and haemoglobin levels seem within accepted range.

I notice from other posts that you've had a problem with severe sweats during the day and some recurring infections. You also have severe fatigue and now the haematologist has indicated spleen and node enlargement. It would be useful to know to what extent but I note you've had pain in the spleen area for some years and a scan indicated nodules on the lung.

These indicators particularly would form a good basis on which to have the treatment discussion with your haematologist as well as the recurring infections and severe fatigue issue. Consideration of sweats are generally seen to be the nocturnal ones and I hope your daytime sweats have subsided now.

* Evidence of progressive bone marrow failure manifest by low blood counts (cytopenias) including anemia (low red blood cells) or thrombocytopenia (low platelets)

* Massive or symptomatic splenomegaly (enlarged spleen)

* Massive lymph nodes or clusters of nodes (>10 cm) or progressive or symptomatic lymphadenopathy (enlarged lymph nodes)

cllsociety.org/2016/03/cll-...

Sounds like your haematologist is just starting the discussion with you about treatment Buzzy and is doing all the necessary tests in advance. It's so important that our consultations are personal because our individual CLL presentation is unique to us and there may be factors we or others advising are not fully aware of.

Don't be freaked. It sounds like your haematologist is being vigilant and keeping a closer eye on things but please ask him to explain the rationale behind recommendations for treatment.

Best wishes,

Newdawn

[AussieNeil Administrator]

Sounds like your haematologist is monitoring you appropriately. Other than your LDH being on the high side, (which probably reflects your more active CLL, but can be due to a poorly taken blood sample), your blood test results are fairly good, so if you do need to start treatment, it will probably be due to your internal nodes enlarging sufficiently to meet recommended requirements to start treatment. I suspect the check in 8 weeks is to see if your count doubling time has slowed (lymphocyte counts can plateau or even decrease after rapid increases) and monitor your nodes/spleen.

You might like to share where you are in the UK to seek feedback from others living near you that have had treatment on what treatments are (were) available, including clinical trials if going onto a clinical trial appeals. Treatment should help with your fatigue if it is CLL related, but with the uncertainty that's inherent with CLL, that could still be years away!

Neil

[SunnyCA]

Hang in there - I actually found starting treatment was a relief to all the watching and waiting that goes along with this.