Just finished today 5 days treatment by SC cladribine

Joined: June 7th, 2018, 8:11 am

June 7th, 2018, 8:22 am #1

Hello all

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
Day 1/Day3/Day5
WBC:4.07/3.11/2.01
ANC:1.7/1.4/1.3
HGB:13.5/14.0//12.9
%ANC:40.7/46.0/65.6
%ALC:54.7/48.9/31.8
PLT :54/56/50

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

Simoneil
 
Background:
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.
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Joined: May 4th, 2010, 1:03 pm

June 7th, 2018, 5:33 pm #2

 simoneil,
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.
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Joined: June 7th, 2018, 8:11 am

June 12th, 2018, 7:42 am #3

FLCcoyote

Thank you for your detailed story.

Sorry to read  you have had very hard time during treatment and soon after.

Hoping  your Blood count at the next CBC will come back to normal .

Today I am in day 10 from the first day of treatment.I fell good no fiver or pain.

I try to be isolated as much as possible (stay at home) and follow the basic precautions that was adviced  in this forum also .

Tomorrow CBC and on Thursday see my Hematologist to evaluate my situation.

I will update.

Simoneil
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Joined: March 27th, 2014, 7:18 pm

June 13th, 2018, 7:39 pm #4

Thanks for the update. I hope that you get good news tomorrow!
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Joined: June 7th, 2018, 8:11 am

June 14th, 2018, 8:04 am #5

Update on day 12  :

 
I met my hematologist  today  with updated  CBC . She was pleased to see that my PLT  is 70 ( since low PLT was my main problem   ). The numbers looks good she said.
 
Although I am  neutropenic she have decided not to give me neupogen  to speed the ANC (unless I will have a fever )  and not to take sulfa due to the possible of having  rush .
 
The following are my  blood counts  since day one of treatment :
 

Day 1/Day3/Day5/Day 11
WBC:4.07/3.11/2.01/1.3
ANC:1.7/1.4/1.3/0.6
HGB:13.5/14.0//12.9/12.5
%ANC:40.7/46.0/65.6/45
%ALC:54.7/48.9/31.8/47
PLT :54/56/50/70
 
I will  meet my doctor next week with updated CBC. I will update.
 
Hope to be the lucky 50%  that will pass the “nadir” without fever .


 
Simoneil
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Joined: March 27th, 2014, 7:18 pm

June 14th, 2018, 2:39 pm #6

This looks good. Platelets are usually the first thing to get better, so perhaps your neutrophils will start rising soon.

The research says that Neupogen doesn't help HCLers unless we already have an infection, so I think your doc made the right choice about that.
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Joined: June 7th, 2018, 8:11 am

June 21st, 2018, 1:07 pm #7

I met my hematologist  today  with updated  CBC . She was pleased to see that my counts are improving after treatment . The numbers  looks good she said.


Generally I feel good with no side effect. I am still at home and lucky to be able to watch  3 World cup  games each day .
 
The following are my  blood counts  since day one of treatment:
 

Day 1/Day3/Day5/Day 11/Day 18
WBC:4.07/3.11/2.01/1.3/2
ANC:1.7/1.4/1.3/0.6/1.3
HGB:13.5/14.0//12.9/12.5/12.7
%ANC:40.7/46.0/65.6/45/62.5
%ALC:54.7/48.9/31.8/47/33.8
PLT :54/56/50/70/107
 
I will  meet my doctor in three week with updated CBC. Mean time she asked  to take CBC tests  every week till our next  meeting. I will update.

Best
  .
Simoneil
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Joined: March 27th, 2014, 7:18 pm

June 21st, 2018, 7:15 pm #8

This looks very good. Congratulations on feeling well.

I hope that your favorite teams are winning, too.
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Joined: March 30th, 2003, 5:17 pm

June 22nd, 2018, 2:40 am #9

Congrats on your recovery and progress. -- Rob
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Joined: June 7th, 2018, 8:11 am

June 27th, 2018, 3:35 pm #10

Today I made  the weekly  CBC tests .  The numbers are almost the same as a week ago, except  PLT that  dropped from 107 to 77. 


The following are my  blood counts  since day one of treatment till today :
 
 
  Day 1 Day 3 Day 5 Day 11 Day 18 Day 25
WBC 4.07 3.11 2.01 1.3 2 2.1
ANC 1.7 1.4 1.3 0.6 1.3 1.3
HGB 13.5 14.0 12.9 12.5 12.7 12.7
%ANC 40.7 46.0 65.6 45 62.5 63.4
%ALC 54.7 48.9 31.8 47 33.8 32.3
PLT 54 56 50 70 107 77
Any thoughts ?
 
I will  meet my hematologist  in two  weeks with updated CBC. I will update   next week with updated  CBC numbers.


Best
  .
Simoneil
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Joined: March 27th, 2014, 7:18 pm

June 29th, 2018, 12:28 am #11

Sometimes platelets will be low, when the lab technician doesn't mix the blood properly.

Also, counts bounce, sometimes for no good reason. It might be better next week.
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Joined: June 7th, 2018, 8:11 am

July 5th, 2018, 6:22 pm #12

Today I had  the weekly  CBC tests .  The new  numbers looks   good  to me. I was pleased to see that  PLT counts climbed  this time from 77 to 100 and ANC from 1.3 to 2 .
 
I don’t  know about my spleen size yet  . When I started the treatment it was 16.4 cm .BTW all  my ( 3 )hematologists  have never succeed to feel my spleen by hands exam.  
 
 
The following are my  blood counts  since day one of treatment till today :
 
 
  Day 1 Day 3 Day 5 Day 11 Day 18 Day 25 Day 33
WBC 4.07 3.11 2.01 1.3 2 2.1 2.8
ANC 1.7 1.4 1.3 0.6 1.3 1.3 2
HGB 13.5 14.0 12.9 12.5 12.7 12.7 12.1
%ANC 40.7 46.0 65.6 45 62.5 63.4 74.1
%ALC 54.7 48.9 31.8 47 33.8 32.3 19.2
PLT 54 56 50 70 107 77 100
 
I will  meet my hematologist  in a  week  with new CBC. I think that she will move from weekly CBC to monthly CBC tests  . I will keep update.


Best
  .
Simoneil
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Joined: March 27th, 2014, 7:18 pm

July 7th, 2018, 7:37 pm #13

Congratulations! These numbers look very nice. I love the low %ALC, too.
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Joined: June 7th, 2018, 8:11 am

July 13th, 2018, 4:03 pm #14

Thank You Waid for your comments and insights.

I had  the weekly  CBC tests .  
 
My hematologist  was very pleased to see that  PLT counts climbed  this time from 100 to 164.  This is the first time since my diagnostics that PLT counts is above 150 which is the lower normal .
 
She  was pleased and said : “….good response to the treatment …” and added that my immune system is still weak and I need to be cautious.
 
However my HGB and RBC are in a small slide down HGB: (12.7, 12.1 ,11.8 ) RBC: (3.95,3.9,3.85 ). Hope that it is a local  situation .
 

The following are my  blood counts  since day one of treatment till today :
 
 
  Day 1 Day 3 Day 5 Day 11 Day 18 Day 25 Day 33 Day 40
 
WBC 4.07 3.11 2.01 1.3 2 2.1 2.8 2.8
ANC 1.7 1.4 1.3 0.6 1.3 1.3 2 2
HGB 13.5 14.0 12.9 12.5 12.7 12.7 12.1 11.8
%ANC 40.7 46.0 65.6 45 62.5 63.4 74.1 71.6
%ALC 54.7 48.9 31.8 47 33.8 32.3 19.2 19.5
PLT 54 56 50 70 107 77 100 164
 
I will  meet my hematologist  in a two months   with new CBC.. I will keep update.

 
Best
  .
Simoneil
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Joined: March 27th, 2014, 7:18 pm

July 18th, 2018, 1:11 am #15

Congratulations, Simoneil. It looks like you are headed in the right direction. Your platelets are normal, and it looks like your neutrophil count is barely normal, too. No wonder your doc is pleased. Are you feeling well?
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Joined: March 30th, 2003, 5:17 pm

July 18th, 2018, 6:21 pm #16

Looking good. Your platelets are where mine are--last time I checked.
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Joined: June 7th, 2018, 8:11 am

July 22nd, 2018, 1:21 pm #17

 Thank you  Waid and Rob

Generally I feel well  . Sometimes in the mornings ( especially after wake up)  I feel a short of breath that  disappear  in about half an hour or less. Lately my gums stopped bleeding while brushing my teeth (PLT jumped from 54 to 164 )  .My  glucose  began to raise from the beginning of treatment on 3th of June  (105 to 117 ) after 8 hours of fasting. I can attribute it to the fact that I stopped exercise in  the GYM since the beginning of the treatment to avoid possible of infection  . My family doctor wants to monitor  closely and to see if it is locally  or a trend that should be treated . By the way my HGB A1C is in the normal rang.
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Joined: March 30th, 2003, 5:17 pm

Workouts, etc.

July 22nd, 2018, 4:39 pm #18

I'll never forget the time DR Nieva working with Saven was taking my bone marrow bio. I asked him if I could still exercise or workout with my counts so low. He asked, and I quote, "Your not jumping out of helicopters are you?" He thought I was still in the Marines doing maneuvers! I said hardly, I'm 51 years old with leukemia. He said, "Oh. I thought you were still ion active duty. In that case it's OK to go to the gym if you feel up to it."
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