Chronic Lymphocytic Leukemia (CLL)-Mayo Clinic

[Titant2]

My father was just diagnosed. But he has type 0 still. No treatment needed. And he is in top condition, runs marathons and is 57. I hope this remains untill the day he dies of old age.

[Josh1980z]

@Titant2 My Father was also a fit and healthy man who ran marathons and was an avid gym junkie. Please god may your father continue to beat the dragon that is CLL. My father unfortunately wasn't so lucky.

[Titant2]

@Josh1980z

I am sorry to hear that, however for now i remain positive. 

[Titant2]

@Titant2 (about my fathers situation)

[Josh1980z]

My 63 year old father Peter Lewin Sadly passed away on 25th November after suffering from CLL for over 8 years. My father was a brave, brave man who fought like a lion until the very end. To all the CLL sufferers out there i wish you nothing but the best and i also wish you all a full and speedy recovery. Dad I miss you and I love you very much. X

[bimjim01]

Thanks, dprosenberger... I am now on my third oncologist - same hospital - and the at least the most recent one tells me that unless things change drastically I will have about 2 to 3 years between the chemo cycles.

My white cells remain below normal but leukocytes are in normal range. I am prescribed 2 Septra antibiotics 5 days a week to fend off infections. I also take additional if my wife gets a cold or I feel slightly "off", and that appears to make a real difference.

Thanks again!!

[dprosenberger]

@bimjim01 I was diagnosed 3 years ago and the studies I have seen indicate approximately 65% of CLL patients die due to complications from pneumonia as our immune system stops fighting.

[pagansoul1]

I'm 23 years old and suffering from CLL. My oncologist did not put me on the rituxumab. I am currently on prednisone and chlorambucil. Both my liver and spleen are enlarged in addition to enlarged lymph nodes. I'm going to talk to him about the rituxumab, since he hasn't mentioned it at all. Thank you for the information.

[gallohad]

My father at the moment is suffering with CLL and begins his Chemotherapy in a week's time

Because of his young age and his good health they have decided to give him 3-4 days worth of hard Chemo. They have told him EVERYONE reacts differently, he could go through these 4 days worth of Chemotherapy and not have to have any treatment for the next 5 years. They have also told him 3-5 years life expectancy but that is according to surveys of people who have bad health and above the age of 70+

[bimjim01]

At the time I started the chemo, in December last year, my red blood counts were only being maintained by the transfusions... indeed, I had a blood transfusion before I received the chemo. My employer's insurance was covering the Rituximab (about CAD$6,000 per bag), but OHIP now covers that as well.

[bimjim01]

My work stopped, of course, and from then until about May this year I have had over 50 Blood tests, over 40 2-bag packed red blood cell transfusions (5 hours each), 16 Neupergen shots (@ home), 1 Bone Marrow Biopsy, 3 Chemo rounds (14 bags of chemicals) composed of 6 bags of chemical F, 6 bags of chemical C, and 2 bags of Rituximab (trade name Rituxam).

[bimjim01]

With my red cell count at 40 my skin was grey, and my blood system had to be built up with transfusions twice a week to a point where I could start the first chemo (in December).

[bimjim01]

Last year (2009) in September, about three months after the periodic minor chemo treatment, I experienced unspeakable fatigue and exhaustion, and my family doctor took a blood sample. Three days later i had a call from my oncologist to get in there early the next morning, and I received my first transfusion of 2 bags of packed red blood cells.

[bimjim01]

I have CLL, and the entire process is now fully covered by the government Ontario Health Insurance Program (OHIP). I was deadly tired for literally decades, but was diagnosed when a small bobble on my collar bone was bothering me, was removed and biopsied back about 2003.

I had the slow-growing version that only required a series of small pills (I was given Leukeran) every few years to bring the whites down from the stratosphere and the reds back up when they started to fall.

[lekenat]

Thank you Dr. Tim. The explanation about CLL was helpful. I hope you succeed with your research, and give patients hope, that they will be cured some day.

[marinagipps]

My father died of CLL.

[eelkonio]

Great video - thanks a lot for this. I will do some research on the "Retuximab" you mention to see if it's also been tried here in the Netherlands.

[1lukigur1]

Nice introductory video! Thanks -