WBC/ABSOLUTE LMPHS/LMPHS % HAVE UNACCOUNTABLY ... - CLL Support

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WBC/ABSOLUTE LMPHS/LMPHS % HAVE UNACCOUNTABLY RETURNED TO NORMAL RANGE

hutampico profile image
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Total WBC, and ABSOLUTE LYMPHOCYTE COUNT have returned to normal range from around 13,000 WBC/6,200 ABS LMPHS/ 45% LYMPHS to,...... NOW down to 10,200 WBC/ 3,570- ABS. LYMPHS/ 35% LYMPHS (as of C.B.C. DIFFERENTIAL two days ago). Diagnosed B-CLL 2+ years ago, watch & wait-RAI-1, mild leukocytosis evident in past annual C.B.C.s going back to 2011. BM BIOPSY 2017- ZAP-70 NEGATIVE/ CD-38 NEGATIVE. I was prescribed Transendis 80 mg/Hidroclorotiazide 12.5 mg (anti-hypertention med) for mild hypertention 2+ weeks ago. Some studies published online refer to extremely rare "spontaneous CLL remission/regression" wherein oral anti-hypertention meds were suspected in up to around 1/3 to 1/2 of the regressions... Any insight out there...(?)..... (THANK YOU!... John G. Reynosa, Mexico Dec. 30 2019)

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AussieNeil profile image
AussieNeilPartnerAdministrator

Great news! Do you know your IgHV mutation status? Spontaneous remissions (~1% chance), nearly always occur in mutated IgHV CLL folk. Given you are negative for both ZAP-70 and CD38, you have about a 66% chance of being IgHV mutated.

Neil

hutampico profile image
hutampico in reply toAussieNeil

HI NEIL!... MERRY CHRISTMAS, AND A VERY HAPPY NEW YEAR TO YOU!!!... My hematologist only ordered the CLL Biopsy/Karotype /Pathologists' report back in August 2017. She later explained to me (in Spanish) that the ZAP-70, and CD-38 negative status likely leaned towards being mutated. I still haven't gotten coverage yet under U.S. Merchant Marine, but even if I do get it, those tests are cheaper back in India (Example;... only $60.00 U.S.D.(!) for CLL BM BIOPSY vs. $1,260.00 in 2017 down here in Mexico, or $10,000 + across this here (Rio Bravo/Rio Grande) river over in the U.S.A... I'd like to go back to India anyhow next year if I can get some useful sea-time/employment, and money saved up. (My whole mouth was EXPERTLY redone in Zirconia crowns back in Pune, India 4+ years ago for only $5,000 U.S.D. vs. perhaps about $30,000 here in Mexico, or even $85,000 to $100,000 in the States...(!)..... Here in Mexico the IgHV mutation biopsy was at LEAST as high cost as the CLL biopsy if I recall correctly the price list my hematologist here showed me last year. The actual Pathology lab is located down south in Morelia, Mexico... As regards my recent regression. In those studies that I ran across they qualified a complete CLL "Spontaneous Remission" as one that was going on past 9 MONTHS, (But I'll KEEP MY FINGERS CROSSED!) and it indeed evidently was the Telmisartan anti-hypertention tablets that were implicated in those regressions, and remissions. Interestingly,... I ran across some other studies that implicated Telmisartan as exhibiting strong apoptosis/autophagy in Melanoma, and some other malignancies. I sure HOPE it isn't like you suggested to another fellow wherein the malignant lymphocytes perhaps could even be being forced into lymph nodes/spleen/bone marrow to fester, and bounce back someday in some manner of Richters' Syndrome nightmare! In any case, if this Telmisartan stabilizes my blood pressure so that I can soon regain "fit for duty" status to ship out for a few months, save some money, and get the requisite 90 days sea-time to initiate med. coverage again,... I will be in a MUCH better position than right now to face lifes' myriad other future contingencies as well... Thank you again for your upbeat, and SUPER-FAST feedback Niel! ( I somehow suspected you might answer, which I am certainly thankful to you for!) John G. Reynosa, Mexico Dec. 30, 2019

hutampico profile image
hutampico

P.S.,.... Ultrasound from Oct 30, 2019 was showing a bit enlarged spleen and liver, but 2 recent Ultrasounds from 2 other different Ultrasound labs several days ago showed BOTH are actually in the normal range, with only minor presence of fat reported in liver, and 30 cc prostate at 58 years old. Everything else in all three ultrasounds were normal. My Absolute Eosinophils, and Absolute Basophil results this week are both ZERO though... I.D.K. what THAT entails... Still residual coughing after week of bronchitis 2- 3 weeks ago. Otherwise robust, and hiking daily all around "Cartel-Land"/Reynosa here...(BUT NOT LATE AT NIGHT...(!).....) THANK YOU AGAIN!... John G. Reynosa, Mexico Dec. 30, 2019

AussieNeil profile image
AussieNeilPartnerAdministrator in reply tohutampico

It's quite usual to have zero counts for basophlils and eosinophils, as the lower reference limits are close to zero and cells of these types may not be found in the sample taken for counting.

I'd be interested in references to. CLL remissions with oral anti-hypertention meds.

Nice side benefit from your job in lower medical costs - provided you can schedule getting ill at the "right" time!

Neil

GrumpyFrog profile image
GrumpyFrog

I am mutated and had a similar experience. Previously, when they did a CT scan they found many enlarged lymph nodes, and a few months later my ALC went down significantly. I think probably the reason the lymphocytes in the blood went down is because they were being sequestered in the lymph nodes. I do NOT believe this indicates an increased risk of Richter's, but in my case one doctor (a leading CLL specialist) said my disease looked more like SLL than CLL. He said that recently they have come to understand that these two diseases are really one and the same, they just present differently.

In any case, it might be a good idea to get a CT scan to see what is going on with your lymph nodes. I am not sure they would show up on an ultrasound.

The IgHV mutation test is rather expensive (I think mine was about $1,500 in Switzerland, which is a high cost country) but I found that it was worth it for the peace of mind you get if you turn out to be mutated. That test literally changed my life.

Bet of luck with everything.

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