Tom McCune's CLL Page

- Chronic Lymphocytic Leukemia -

CLL Links

BMT-Talk Email List  BMT-Talk is the email list devoted to all the patient, family, and clinical issues of bone marrow transplant.

Chronic Lymphocytic Leukemia List Archives  is a collection of all the postings to the CLL email list, since it was created in November, 1996.  To access it, you must be a subscriber to the CLL email list, and have a password.

CLL PDQ  "PDQ is a computer system that gives up-to-date information on cancer and its prevention, detection, treatment, and supportive care.  It is a service of the National Cancer Institute (NCI) for people with cancer and their families and for doctors, nurses, and other health care professionals."

Dana-Farber Cancer Institute  DFCI is one of the finest of the comprehensive cancer centers.  This is where bone marrow transplant curative attempts for CLL began.

GrannyBarb and Art's Leukemia Links  This has to be the most comprehensive collection of leukemia links in the universe.

My CLL History

In May or June of 1988, I noticed an enlarged lymph node under my beard.  I ignored it until I noticed another one and then decided that I better go in for antibiotics (July, 1988).  The Physician Assistant thought that I had Hodgkin's Disease and sent me for blood work.  The blood work suggested CLL (Chronic Lymphocytic Leukemia). I was there when the Physician Assistant called the Hematologist-Oncologist who would not believe that at age 36 (my son was 9 years old, and my daughters were 12 and 5 years old) that I could have CLL, until he saw the slides and got the bone marrow biopsy results.  Everything I could find to read indicated an average survival of 4 to 5 years, and that no one had ever been cured of this.  Through some searching and good fortune, I received a telephone call from Dr. Susan Rabinowe at Dana-Farber Cancer Institute (DFCI) in Boston.  She explained that they had some very positive results with bone marrow transplant (BMT) in the similar disease of Non-Hodgkin's Lymphoma and they felt that bone marrow transplant could be used in younger CLL patients to produce either long term remission or possibly cure, and that otherwise these younger patients would die from the CLL.  It was stressed that bone marrow transplant should be before other treatments produce either excessive treatment resistance or excessive bone marrow damage.  My HMO (Health Maintenance Organization) would not pay for me to travel the 300 miles to Boston for consultation so I had to wait until November when I had the option of changing my insurance to a more expensive alternative.

Tests at DFCI indicated that I had extensive lymph node involvement, 95% bone marrow involvement, and that my spleen was 4 to 5 times normal size.  My life expectancy was not more than 4 or 5 years with standard treatment.  I began CHOP (cytoxan, doxorubicin, vincristine, prednisone) in March, 1989, with very positive response.  After 6 treatments, my spleen was still twice normal size; so it was removed (splenectomy) in October, 1989, to reduce the chance of relapse after I would have my bone marrow transplant.  I then had a weekend hospitalization for some heavy duty cytoxan to further prepare for the bone marrow transplant, and my marrow involvement went down to less than 5%.  Since my sisters were not a match, I was going to have an autologous bone marrow transplant (using my own lab cleansed marrow).

In January, 1990, I had my 3.5 week stay at DFCI for the autologous bone marrow transplant (as the first BMT curative attempt for CLL), followed by 8 days in Boston for outpatient follow-up at DFCI.  I couldn't believe that when we were outside of Boston my wife asked if I would like to drive home - I did (but it was wintry weather, and a foolish thing for me to do).  After a 4 month absence, I returned full time to work as a psychologist with the local state psychiatric center.  I am now retired from New York State, working half time for a major data security/encryption company, and working part time as a psychologist.

Long term side effects from my treatment have been minimal.  For a couple of years, I had to have antibiotics after dental work.  Due to the total body irradiation, I need to avoid prolonged exposure to the sun unless using sunscreen.  Also from the total body irradiation, I was found to have cataracts in 1995 - this causes much sensitivity to light and requires me to wear sunglasses when outside or in bright light.  In 2000, I began hormone replacement therapy for hypogonadism that men frequently have after bone marrow transplant.

My 7 year evaluation was on 2-10-97.  According to my local oncologist, his test results from the blood and marrow samples showed no leukemia.  My diagnosis for the work up was Hx CLL, rather than the CLL that it had always been previously - a nice change to History of Chronic Lymphocytic Leukemia.  Email from DFCI reported: "Your bone marrow biopsy has been interpreted as 'not diagnostic of lymphomatous involvement', meaning free of tumor."

My 8 year evaluation was on 12-2-97.  Except for elevated triglycerides, my blood test results were essentially the same as in February.  This included a white count of 7.2 (40.7% lymphocytes).  Since I quit doing X-rays and CT scans out of concern about accumulating radiation, and I agreed with my oncologist that bone marrow biopsies were no longer necessary, this was as official as my 8 year Disease Free Status could be.

My 9 year evaluation was on 12-4-98.  Blood test results were quite similar to last year's, including a white count of 7.1 (33.8% lymphocytes) - apparently 9 years of Disease Free Status.

My 10 year post BMT evaluation was in September, 1999, and was comprehensive.  Dr. John Gribben, Dana-Farber Cancer Institute, reports: "Everything is completely negative.  You have NO disease on CT scan, no disease in your BM, flow cytometry is negative and your PCR is negative.  At 10 years out from BMT, may I for the first time ever in CLL suggest the word CURED might be appropriate in your case!"

9/18/2001 Update: I don't have much to add, but it has been two years since I updated my status here.  I remain healthy with no indication of CLL or any other kind of cancer.  My CBC from a couple weeks ago has every single value within normal limits, including a White Blood Count of 6.7.

6/10/2002 Update: All remains as above, with my CBC of 5/28/02 having all values within normal limits, with a WBC of 6.4.

6/14/2003 Update: All contnues as above, with my CBC of  5/30/03 having all values within normal limits, with a WBC of 6.5 (38.1% lymphocytes).

6/25/2004 Update: Nothing really new to report - my CBC of 6/16/04 still has all values within normal limits; WBC is 6.2 (38.3% lymphocytes).

6/29/2005 Update: CBC of 6/17/05 still has all values within normal limits; WBC is 6.3 (36.4% lymphocytes).  The only thing new to report is that I am looking forward to retirement at about the same time that I will be doing my next annual update here.

6/30/2006 Update: CBC of 6/23/06 again has all values within normal limits; WBC is 7.1 (35.6% lymphocytes).  Today was my last work day!  I am on vacation until my effective date of retirement in July.

8/18/2007 Update:  My 6/2007 CBC was again within normal limits.  Late last year after my retirement, I had the good fortune of starting  work for a major computer security company, converting my long term hobby into employment!

1/12/2009 Update:  I am now in a very early, and apparently very slowly progressing, relapse of the CLL.  Looking back at my June, 2007 CBC, my WBC had risen to 9.8, and my absolute lymphocyte count to 5.2; nothing of great importance, but apparently the beginning of this relapse.  My June, 2008 WBC had risen to 13.2, and the absolute lymphocyte count was 9.  My 1/5/09 WBC is 14.4, with an absolute lymphocyte count of 9.2.  The lymphocyte doubling time is in the desired direction!  Marker results include FISH showing the desired 13q deletion, and the desired Negative ZAP-70.  Flow Cytometry shows the only undesired marker: Positive CD-38.  The available data makes it realistic to expect a period of years before needting treatment, and to then respond very well when treatment becomes necessary.

4/11/09 Update:  The relapse doesn't appear to be progressing at all so far - testing on 4/6/09 showed a WBC of 12.9 and an Absolute Lymphocyte count of 8.3!  Everything else is "normal."  Maybe this small improvement is related to my vacation trip to China the prior week.  :-)

10/13/09 Update:  When I saw my oncologist yesterday afternoon, she started by saying that she could not explain it, and she initially thought she must have been looking at someone else's blood results, but my white count (and everything else) is now in the normal range. Three months ago, my WBC had a little dip to 14.0, and my Absolute Lymphocyte Count had gone to my lowest point since the relapse, to 7.7. Now, my WBC is 6.8 and my ALC is 2.8. She checked me for enlarged lympth nodes and couldn't find any. So, my very early relapse now appears in remission.   :-)

10/25/09 Update:  I thought I should add something about the other more recent significant health problem in my life.  On 5/15/09, I was cruising down the highway on my motorcycle at 60 mph, when an oncoming car suddenly turned in front of me.  It was listed in the paper as a head on collision, with me then going over the car and about 90 feet further down the road.  I was hospitalized for 33 days and treated for a spinal compression fracture (spinal fusion), fractures to my left femur (now have a long titanium rod in the leg), multiple left foot fractures, and left toe fractures.  When I came home, I was wearing a shell like back brace and using a walker with hoping around on one foot.  I've been very fortunate with things healing well, and am now in the process of weaning myself off the cane use, driving again, and being back at work.  I still need to improve my walking and back pain, and the improvement is still ongoing.  My large foot laceration is not yet completely healed, but is also still progressing.  I guess I'm not so fortunate in avoiding medical problems, but am extremely fortunately in dealing with them.

1/27/10 Update:  Although not quite as good as my last report, my latest blood test (1-6-10) shows a WBC of 8.1 and an ALC of 3.7. 

4/12/10 Update:  My blood work from last week shows a WBC of 7.3 and an absolute lymphocyte count of 3.2.  These results are better than that of 6/19/07, which was the first  hint (ALC was 5.2) of a possible relapse coming.  Today, my oncologist checked for enlarged organs and lymph nodes and couldn't find any.  She agreed with my suggestion of moving from three month checks to four month checks.

9/24/10 Update:  The remission continues!  8/5/10 testing for my Hem-Onc includes a WBC of 7.0 and an ALC of 3.3.  My 9/15/10 testing for my Internist includes a WBC of 7.9 and an ALC of 3.3.  I've had great recovery from the motorcycle accident., and was very happy to have returned to my pre-accident weight lifting performance until I started having some problems with my shoulder a couple months ago.  My Internist says it is a rotator cuff  problem and I'm going for a PT evaluation this morning.

5/3/11 Update:  There is no change in my CLL status.  My last bloodwork was on 3/28/11, and includes a WBC of 7.7 and ALC of 3.2.  Although not completely eliminated, PT was very good for the rotator cuff problem.  I've been back into my lifting for some time now, but am avoiding a couple of my old exercises that my PT says are bad for the shoulder.  However, I've increased the number and type of exercises, doing more reps with slightly less weight, and have better results from it. 

8/4/11 Update: The remission of nearly two years remains: 7/26/11 WBC of 6.1 and ALC of 2.8.  It has been five years since having a lower ALC, before the relapse.

12/2/11 Update: I'm very glad to say that there is little to report.  My 11/22/11 blood results include a WBC of 7, and ALC of 2.9.  The greatest personal issue in my life right now is deciding which new cell phone to purchase on the 11th.

7/24/12 Update: My nearly three year spontaneous remission continues with my 7/16/12 blood test results including a WBC of 6.99 and ALC of 2.9.  Four months ago, I began martial arts again; this time in the American Cane System - I'm scheduled for Yellow Belt testing on 7/30/12!

12/5/13 Update.  I've not updated this page recently, simply because there was really nothing new to report.  However, since it has been a long time:  My spontaneous remission continues; 11/26/13 WBC of 6.62 and ALC of 3.33.  I'm excited about my 12/16/13 scheduled Blue Belt testing.

11/19/15 Update:  I was shocked to notice that it has been so long since updating this page, for the same reason given above.  The only CLL related change is that my ALC has been slightly elevated for the past year - most recently at 4.4.  In July, I married my wonderful wife Cheryl - I now live in the Syracuse area.  I passed the reported Blue Belt testing above, and subsequent testings for Purple, Tan, and Brown - there is the possibility of achieving Black Belt status around the time of my 65th birthday.

CLL (Chronic Lymphocytic Leukemia) is usually not treated until there is some physical symptom(s) that requires it.  In my case, it was the high level of spleen and marrow involvement - I had felt extremely well except for lymph node enlargements that were rather obvious, and one morning when I thought I was having a heart attack (my spleen).  I think it makes a lot of sense to avoid treatment until required and then to decide whether to proceed with traditional treatment (such as oral Chlorambucil or intravenous Fludarabine), or to proceed towards a potentially curative bone marrow transplant. It seems wise to also use the "watch and wait" time to keep an eye on recent CLL treatment developments.

Sometimes I have been asked why I have had the successful cure that others have not been so fortunate in achieving.  My thoughts on probable key components:

CLL Email List
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