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
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JEEA
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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 .
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...
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.
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
(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®)
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.
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
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.
Hi JEEA,I'm a bit late to the party, but chiming in to say that I have Leukemia Cutis, with mild lesions in 3 or 4 different areas on my torso. Mine seem to have started as hives following COVID vaccinations (especially summertime vaccinations) that became inflitrated by my CLL.
I was prescribed a steroid cream (Clobetasol) that clears them up, but they seem to pop back up eventually.
I have no other CLL symptoms and my neutrophils and platelets are in the normal ranges so far, though my lymphocytes are creeping up a bit. I'm in year 3 of W & W at age 56. My doctor is also not a CLL specialist. At every appointment he tells me that treatment time is coming up. Because of my age and total lack of symptoms I'm not excited about starting treatment too early lest I run out of options too early.
Anyway, I'm interested in what happens with you and I'm cheered by the fact that you're still bowling and loving life!
Thank you so much for your reply. It's very good to hear that Leukemia Cutis is not causing you huge problems at present. Like you, I'm not excited about starting treatment but at age 80, I am a lot older than you. It does look like I am probably nearing the sweet spot for starting.
By the way, I too, am Canadian, but have lived in the UK for 54 years --married to a Scot's husband. I've just been back to Canada for a 3 week visit to friends and relatives in BC and Alberta. I decided to go while I was in pretty good health. My daughters said 'go now, before something else goes wrong'! Such in ageing. It sounds like you are enjoying your youth!
I'll let you know what happens.
Eleanor
ps I seem to remember you are in Ontario, but may have that wrong without checking past posts? I've lived in Calgary, Victoria, Montreal and Inuvik.
Hi Eleanor,Yes -- I'm in southern Ontario now, but have lived in Montreal and New Brunswick. One of my sons lives on Vancouver Island now, and what a lovely place that is!
My partner is a dual Canadian/UK citizen... we have a little fantasy that when I retire (he's already retired), we may go live in the UK or Ireland for awhile. We were in Cornwall in 2021 and loved it, and in West Cork in southern Ireland (where my own forebears are from) this past April. Both those places would be wonderful to live in for awhile... as would Scotland. It's hard to choose. Maybe the thing to do is to buy a "caravan", as folks call it there!
Good for you for getting some travel in before starting treatment. Staying away from germs while your immunity is low will be frustrating... but hopefully the payoff will be continued high energy!
Best wishes to you for a smooth course of treatment.
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How to decipher a letter from the haematologist?
Lymphocyte count going down slightly
Increased fatigue levels / Breathlessness and Petechiae
Swollen lymph nodes 
