Probably nearing treatment -some questions

[JEEA]

My haematologist has sent a letter to my GP that she will be asking me to meet with her in several weeks time "with a view to starting treatment given the evidence of cutaneous progression." I missed my last appointment with her because she was ill, so had a phone appointment with another of the consultants in the Haematology department --none of who are CLL specialists. The consultant who saw me then phoned me as well to say that they would discuss me in the Multidisciplinary team--but that it wasn't my blood results indicating treatment so much as the fact that the CLL cells had spread to my skin.

You may remember that my last post was about my dermatologist writing to me about a biopsy she had done on a very small mole on my back which showed "" The biopsy results have actually shown features consistent with your diagnosis of CLL." She sent these re=ts to my haematologist.

I am aware that I am probably getting near to treatment. Having said that, I have no enlarged nodes, nor spleen, am not losing weight, nor having night sweats. I had Covid 3 weeks again and was left with fatigue which is now much better, but generally I feel that I have less energy. The haematologist on the phone thought that although I was 'slightly anaemic' she thought it was probably Covid that was making me more tired.

In some other posts I have read, I think that I understand that there is a 'sweet spot' for beginning treatment and am not sure how I would know when I reach that? I am thinking that I will ask for a CLL specialist referral (or pay privately to see one), but in the meantime, I would welcome comments from others who may have some thoughts about where I am at present with my CLL. With thanks in advance, Eleanor

My last blood results on July 12th were

Neutrophil count: 8.53 10*9/L

Total white cell count: 208.10 10*9/L

Lymphocyte count: 192.70 10*9/L (A year ago my Lymphocyte count was 136.16 10*9/L)

Monocyte count: 5.83 10*9/L

Eosinophil count: 0.42 10*9/L

Basophil count: 0.62 10*9/L

Red blood cell (RBC) count: 3.64 10*12/L

Haemoglobin estimation: 104 g/L

Haematocrit: 0.33

Mean corpuscular volume (MCV): 90.8 fL

[Spark_Plug]

Sounds like this report: ncbi.nlm.nih.gov/pmc/articl...

[JEEA in reply to Spark_Plug]

Thanks Spark Plug. Interesting to read that article but disconcerting. Having said that, I have only had one very small mole so it may or may not be leukemia cutis. Of course I hope not, but I guess that is what the haematologists are probably worried about. Now comes the question of whether I take the time and energy to find a CLL specialist to explore this, or just accept the inevitable and start treatment. At my age --80--we have already have talked about acalcibrutinib as apposed to V and O .

[Spark_Plug in reply to JEEA]

Well, age is a valid consideration, of course even at the same age we vary. At 89 my grandmother's body started shutting down, at 88 my mother it is her cognitive abilities.

In my opinion, very unmedical, if treatment is already on the table, why wait? You may have very good reasons, but that comes under your own choice. My question is, your systems must have some energy for any therapy to work, do you see a sudden rebound in vital energy in your future...

Best hopes and wishes, 🙂

[JEEA in reply to Spark_Plug]

Very good point, Sparkplug. I'm tending towards going ahead with the hopes that it will also help my energy to improve. I'd love a sudden rebound in energy! Having said that, we're 10 pin bowling with our grandchildren at present and I'm winning --so far--so clearly I have enough energy for therapy to work, methinks.

[Spark_Plug in reply to JEEA]

STRIKE 🙂👍

[mrsjsmith]

Eleanor sorry to hear this,

Would Barts be your nearest hospital ? Samir Agrawal is definitely a CLL specialist and does NHS and Private.

Colette

[JEEA in reply to mrsjsmith]

Thank Colette and thanks for Barts recommendation. I am in the Oxplore Trial in Oxford (seen every two years) and go to Oxford weekly for grandchildren, so I'll try there first, I think. But good to have other names.

The question if whether or not I have the time and energy to go to a CLL specialist if I am going to have to start treatment in any case......but it may be useful to know whether or not it really is leukemia cutis. I think not.......🤞 Eleanor

[mrsjsmith in reply to JEEA]

Sitting having my IVIG but just looking Tony Eyre is in Oxford !! I would definitely see him.

[JEEA in reply to mrsjsmith]

Thanks Colette. I don't know him but good to know. I'll look him up and phone tomorrow.

Off to Oxford just now for daughter's birthday. 51! My energy is returning. Eleanor

[mrsjsmith in reply to JEEA]

Have a lovely day.

Yes he does NHS and private at Churchill. I have heard him talk and he is very knowledgeable.

[Skyshark]

Get your vaccinations up to date.

(UK NHS) CLL patients should receive, the pneumococcal conjugate vaccine (Prevenar® (PPV13)) followed by the pneumococcal polysaccharide vaccine (PPV23, Pneumovax II®) at least two months later, irrespective of previous vaccinations. Pneumococcal polysaccharide vaccination should be repeated at five yearly intervals.

Patients who have been previously vaccinated with pneumococcal vaccine only (PPV23 Pneumovax II®), should receive a “catch up” dose of the pneumococcal conjugate vaccine (PCV13, Prevnar®)

nssg.oxford-haematology.org...

If there isn't time before treatment for both PCV13 and PPV23, then just PCV13 and delay PPV23 until at least 3 months after treatment.

nssg.oxford-haematology.org...

Also shingles vaccine, 2 doses of Shingrix vaccine 8 weeks to 6 months apart. If there isn't time for the 8 week gap then delay both until after treatment. They will give you an antiviral during treatment.

[JEEA in reply to Skyshark]

Thanks Skyshark. I had all my vaccinations updated about a month ago knowing that I was nearing treatment. But I must double check my pneumonia one--not sure I got that particular one. I had my 2 doses of Shingrix a few years ago. Eleanor

[AussieNeil Partner Administrator]

Hi Eleanor,

Whether on not you have Leukaemia Cutis, your haemoglobin is on the threshold of needing treatment. As such, you are about to enter the optimum treatment window. One of the reasons trends are important with CLL, because they provide some guidance on the width of the optimum treatment window. Haemoglobin or platelet counts quickly trending down will indicate a small optimum treatment window, whereas slower downward trends means you'll have more time to get up to date vaccinations and investigate clinical trial and your optimal treatment.

Per Skyshark 's reply, your priority now, before you start treatment, is to wisely choose which vaccinations can give you the best protection against your increased risk of infections during your treatment. I'd add ensuring you are up to date with the latest COVID-19 booster if you can. The pnemococcus vaccines are important in reducing your risk of pneumonia from this common bacteria, but viral infections like COVID-19 also set you up for an increased risk of pneumonia.

Neil