I want to share with you my method to keep Lymphocytes count at bay.
I am a sport man 57 years old living in Malaysia (Italian citizen) first CLL diagnosis on 2018. My sport activity is a kind of miscellaneous:
- each day I walk and climb the big rocks and cliffs in front of the Pacific Ocean
- I arrive on a long sandy beach where I practice speed-walking for 2 km (speed above 8 km/h). Pulse reaches 160 per minute during the run and goes down to 80 per minute in about 5 minutes after termination of the walk. Sometime I run instead than speed-walking (speed of run above 9 km/h).
- Then I dive in the sea where I swim for 10/15 minutes.
- After that I take sun for 10 min lying on quite hot rock surface.
- Then I go back, walking and climbing again the rocks and cliffs, partially using also a track inside the primary jungle, just behind the rocks.
I conduct this activity around noon, when rocks are really hot, also to get some vitamin D and controlled irradiation from the sun. (I always wear cap to avoid damages from the tropical sun).
In the evening I often have sessions of finnish sauna at 80-90 C, sometimes up to 100 C, and very low humidity (around 10-12%).
Sauna durations are fixed: 10 min sauna, 15 min relaxing time, followed by a second sauna session of 10 min.
After each sauna session I monitor my body temperature, oxygen saturation level in blood and pulse.
Recently I discovered Kombucha drink, which apparently gives a boost to my sport performances, so I guess it could also be working in reducing Lymphocytes count.
My feeling is that the best way to reduce mutated Lymphocytes could be in order of importance:
- Lying on hot rocks for about 10/15 minutes
- High temperature sauna
- Controlled exposition to sun
- Aerobic activity
- Active drink and food (e.g. Kombucha or Curcumin)
I am not sure of all these, it's just my personal feeling.
My first year of CLL (2018) I had Absolute Lymphocytes Count at 12-15k, now (April 2022) I am at 9-10 k.
I don't have any symptom at the moment (after 4 years of wait & watch), except a little bit of fatigue in the evening.
From my last blood test :
Red Cells 4.4 10^12/L
Hemoglobin 13.4 g/dL
Hematocrit 40 %
Platelet 235 10^9/L
MCV 9.25 FemtoLiter
MCH 30 Picograms
MCHC 33 g/dL
I am thinking to put together a system able to transfer heat to spine and pelvis bone (70% of red marrow is there). It could be a lava stone, as the ones used for cooking, but modified with an electrical heater and of course a thermostat to keep the stone temperature within body tolerance limits.
Please let me know what is your opinion on my method and please share your personal natural method if you have any.
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Nikotati
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I remember reading the story of a CLL patient that got very good results with a regular regimen of saunas. Unfortunately due to covid, I stopped going to saunas for the last couple of years. In my opinion your exercise routine, with limited sun exposure and the saunas should give you good results for a long time. Just be careful not to over expose your skin to the sun, that can cause other types of problems. Best of luck to you…
Congratulations on keeping yourself fit. There is plenty of evidence that exercise is beneficial when we have cancer and I've posted about the benefits several times. Exercise can also help reduce fatigue.
Per your flow cytometry results,
healthunlocked.com/cllsuppo... your CD38 negative status is consistent with your stable disease. Good on you too, for plotting your absolute lymphocyte count and not your absolute white blood cell count.
CLL cells are more fragile than healthy B cells, but I'm not aware of any good quality studies that show a possibile CLL improvement from heat exposure. I too would be concerned about the skin cancer risk from sun exposure others have mentioned. Infra-red sauna in your apartment might be the safer way to go.
My Flow Cytometry reports 25% of abnormal Lymphocyte cells, what does it mean? Does it mean that if, for example, I have ALC=16 only 4 are CLL Lymphocyte cells?
What are the implication of CD38 negativity? What this parameter is linked with?
That 25% of cells express a pattern consistent with monoclonal CLL/SLL cells. However perhaps due to a translation issue, it's not clear to me if that 25% is of all white blood cells or just the lymphoid cells. 18% are (helper and cytotoxic) T lymphocytes, but the 52% which are said to be granulocytes (neutrophils) and 3% monocytes are not lymphoid, but myeloid cells. It's normal to have more T than B lymphocytes perhaps making up about 60 to 70% of your lymphocyte count.
Following on from that I'm not sure if you are plotting your total white blood cell count or just your lymphocyte count. It's usual to report in the Complete Blood Examination/Count (CBE or CBC) which you haven't shown, a total White Blood Cell (WBC) count and a differential. The differential includes reports of granulocytes (neutrophils), lymphocytes, basophils, eosinophils and monocytes by percentage and hopefully also absolute counts. (The lymphocyte count includes helper and cytotoxic T cells, healthy B cells and clonal (CLL) B cells and Natural Killer cells. These different lymphocyte types are virtually impossible to tell apart visually, which is why the immunophenotype flow cytometry test is used for this.) If absolute counts aren't provided, multiply the percentage of each white cell type by the total WBC amount to work out the absolute count. Do not use the percentages for other than calculating absolute values as percentages are dangerously misleading with CLL. That's because as the lymphocyte count changes (usually increasing) with CLL, because the total percentage must be 100%, the percentages of other white blood cell types must decrease even if their count goes up a bit less than the lymphocyte count does.
With respect to you being negative for CD38 expression, that correlates to a slow CLL progression. It's an independent marker from IGHV mutation status, which unlike CD38 is unlikely to change over time. If you are CD38 negative, you have around a 60% chance of being IGHV mutated which is also very favourable for slowly progressing CLL. IGHV and FISH testing which can also give more information on your likely journey with CLL, don't tend to be done until just before treatment unless you live in the USA.
You are correctly plotting your ALC, but I can't match your CBC with your flow cytometry report. Your monocyte counts match closely enough, 2.7% vs 3%, but your neutrophil counts are widely different at 18% vs 52%.
Your other counts are fine, confirming that from this aspect, you are in the early stages of CLL.
AussieNeil I send you my complete excel file statistics. As you can see neutrophils never went over 36%. Could be a mistake in the flow cytometry report?
I bought an infrared solo sauna last year. The theory is that with a sauna if you get your temperature up 3 degrees your body thinks its sick and try's to heal it. It felt wonderful. It's a long tube and it was very comfortable. turned on youtube with soft music set the timer and was in heaven. It costs about 2500 but i felt like i was healing. A couple of months later i had melanoma on my arm. Long story short, it went into my lymph nodes because a surgeon at city of hope thought it was ok to wait 7 weeks to cut it out. I had no idea we were prone to melanoma and now I wait for it to come back somewhere in my body like, spleen, brain eyes ect. googled melanoma and cll and there it was. How prone we are and how infrared sauna's can be the culprit. That's my experience with sauna's.
akajeanie1 Thank you for sharing your experience. So now I think I won't install an infrared sauna. I will keep on with finnish sauna where the irradiation it's completely natural and given by a stove.Regarding body temperature, my body usually get to 39.8 C after 10 minutes in sauna at 90 C, so there is an increase of 3.3 C respect to my basal temperature.
Finnish sauna is anyway a pleasant and relaxing moment. I' ve been doing it with a frequency of about 5 days in a week since 2019 and I didn't have any problem so far.
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High white count, need advice 
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