First of all I would like to thank all how participate and post in this great forum .I am glad I founded it close after my diagnostic, It is an excellent place for updated information which helps allot (as Waid writes : “our little corner of the internet” ) . It is encouraging to read about many success stories in this forum.
63 years old, was diagnosed having HCL at the end of March 2014. I was feeling good before and at that time when it was discovered, following routine CBC I have been doing every one year.Since April 2014 I was on watch & wait (see background below)
Today I finished my 5 day cladribine treatment by injections under the skin. Feeling good during the treatment with no major issues.
The following are my blood counts before each day of treatment
My understanding is that I am on the “right direction” in terms of initial response to the treatment. (WBC went down,% ANC up and % ALC down )
I would appreciate your thoughts about the possible ANC numbers from this point and on ,taking in to account that my ANC after 4 days of treatment is 1.3.
Should I be ready to the possebility that the ANC will bottom below 0.5 in the comming days (dangerous zone) ?
Wish all hairy free
63 years old, was diagnosed having HCL at the end of March 2014. I was feeling good before and at that time when it was discovered, following routine CBC I have been doing every one year:
Two years before diagnostic I noticed that since 2008 at each routine blood check my platelets (PLT) counts were declining in low slope. Since the counts were in the normal zone (150-450) my family doctor did not pay attention to the slope until I talked to him about it. Finally when my counts were at about 100, my family doctor sent me to hematologist for more checks. At the end of addition blood tests and BMB (that was almost painless, due to my doctor how did it with allot of patient and local anesthesia ) I was diagnosed having HCL. Needless to tell that I was in shock . I was even afraid to write the word “leukemia” on google. I lost 6 pound in that week due to the tension and concern. Than I found this forum ….and magically I gain the 6 pound I have lost in the following weeks.
Since April 2014 I was on watch & wait and I have met my hematologist every 2- 3 month with updated CBC. During that period of time two of my hematologist doctors left the hospital to private practices and now I have my third hematologist (MD professor ). Generally I am feeling good, exercise in the gym 2-3 times a week , but 10 month ago I was hospitalized for two weeks due to acute pneumonia. It was a hard experience (as Pat and otherd described in this forum).
Most of my counts are currently close to lower normal and were not changed much during the last 3.5 years from the diagnostics. For example: Hemoglobin from 13.9 to 12.7 today, NEUT from 2.2 to 1.6 today. Spleen enlarged from 13 cm to 16.4 cm.
Counts on December 2017 :WBC 4.6, RBC 4.07,LYM% 60.5 , NUET% 34.7, MONO 0.1 , NEUT 1.6 ,Hemoglobin 12.7, PLT 44 ,LYMP 2.8 .
Counts on March 2018 : WBC 4.0, RBC 4.28,LYM% 58.6 , NUET% 35.7, MONO 0.1 , NEUT 1.4 ,Hemoglobin 13.5, PLT 47 ,LYMP 2.3 .
Unfortunately PLT counts dropped significantly from 80 to 47 in last 4 years. PLT counts values fluctuate between 52 to 47 at the last 1.5 years .I am not bruise, except for minor bruising gums during brushing teethes.
Few days ago my hematologist and I agreed to treat on 03th June 2018. She kept saying that she afraid that my PLT will drop below the 47 during treatment .PLT= 40 was her “red line” for treatment.
Thought I would give you a summary of my HCL treatment and experience. I was diagnosed in 2009 after having a number of infections/problems in the year before. At the time I started chemo (5 days Cladribine) my red Blood cells, white blood cells, platlets and hemocrite were all at dangerously low levels and my chemo was treated on an emergency basis, I felt fine immediately following the chemo and was sent home with 10 days of nuprogen injections packed in dry ice for my wife to give me one daily. Within 2 or 3 days after getting home I got very weak and hurt all over. I ended up spending the next three weeks lying flat on a single mattress in my den (with TV). I hurt badly enough that I couldn't even sit in a recliner. I had to get a blood test every three days and on day nine the blood counts were still not much improved so the hospital gave us another 10 days of nuprogen. Around day 13, my fever got a little out of control and if I remember right we had been told to go to the emergency room if it reached 101.3. We packed and prepared for the hospital visit and the fever peaked at 101.2 and down from there in a few hours. On day 16, had a blood test and the hospital called on day 17 and said stop the nuprogen, that my blood counts were much improved and on the way up. I was not pronounced in remission until about five months after the chemo. My blood counts have been great since then. There is a recent downside, two days ago on a routine follow up doctors appointment, a blood test showed a sharp drop in Lymphocyte's, next step is a CBC. The Hematologist is concerned that I may be in the beginning stages of relapse. It's been nine years since chemo and the average relapse is 10 years. I really hope not. Anyway I was pretty weak/sick for about three weeks after chemo, but was able to go back to work. Good luck and keep an eye on the fever. My understanding was that the fever was caused by dead and dying hairy cells from the chemo.