The Leukemia & Lymphoma Society - Fighting Blood Cancers
17 Replies Last post: Sep 11, 2009 6:46 PM by Susan61   1 2 Previous Next
Jamar   26 posts since
Aug 29, 2009
Currently Being Moderated

Aug 29, 2009 7:03 PM

New to the board

Hello,

 

Not too happy to be posting here but, I am looking forward to meeting some new people.

I am 38 and was diagnosed with CML Friday 8/28/2009.

What started out as a doctors visit on 7/8 due to stress at work and sleeplessness led to 2 months of blood tests, white blood cell counts, and general anxiety wondering what exactly was going on.

My wbc counts ranged from 23.5 to 36 and back down to 22.5 over a period of 4 weeks. There was some hope that this wasnt leukemia due to the fluctuation of the wbc count.

Friday it was confirmed that the Philidelphia chromosome was present and that I do have CML. I go in for a bone marrow test this coming Thursday and will start taking Gleevec the following Friday.

 

I stated reading the board after my first hematologist told me that I could possibly have CML on (7/27). I have since changed doctors (her follow up visit isnt scheduled until 9/4!!!)

I was able to get an apointment with another doctor who ran blood tests and was able to give me a diagnosis in 1 week.

 

While I am not happy about the diagnosis, I am relieved to finally know what is going on and that I can start treatment.

Trey   619 posts since
Mar 27, 2009
Currently Being Moderated
1. Aug 29, 2009 7:45 PM in response to: Jamar
Re: New to the board

Welcome.  Sounds like you were diagnosed very early, since your white blood count (WBC) is fairly low.  That is a good thing.  If you have not seen this posting for the newly diagnosed, it might be useful:

 

http://community.lls.org/thread/2600?tstart=0

ROM1212   29 posts since
May 4, 2009
Currently Being Moderated
3. Aug 30, 2009 11:25 PM in response to: Trey
Re: New to the board

Jamar, welcome to our family.

 

All this will be new to you, and processing it all takes alot of time.  Know there are many people here who can help you wade through it to make it meaningful to you.

 

Blessings to you.

Susan61   244 posts since
Apr 4, 2009
Currently Being Moderated
5. Aug 31, 2009 6:03 PM in response to: Jamar
Re: New to the board

Hi Jamar:

     Welcome to our group. That sounds so odd everytime I have to say it, but as you get to know everybody you will feel better mentally.  You are scared because reality sunk in.  It will be 11 years for me this December, and I still can remember the day I was told I had CML.

Never thought I would see another Christmas, but here I am.  In remission and taking one day at a time.

     The side effects will be different to everyone.  Not everybody gets the same aches and pains etc.

     Just ask us anything anytime.  You were diagnosed early as Trey said, and I attribute my progress due to my early detection also.

     I had no symptoms.  Just went for my regular yearly work-up, and my WBC was only 14 and then 18.  They did a bone marrow biopsy on me almost immediately, and I am so grateful for my doctor.

    Let us know how your doing as you do your treatment.  You will be okay.

   God Bless You

RJF   17 posts since
Jun 10, 2009
Currently Being Moderated
6. Sep 1, 2009 11:29 AM in response to: Jamar
Re: New to the board

Hi Jamar - Welcome to the website.

 

I was diagnosed this past April at age 39.  Much like you, I went to the doctor because of aches and fatigue.  My WBC ranged from 18-44 before I started treatment.  After 4 months of Gleevec I seem to be headed in the right direction (won't bore you with details).  I feel fortunate that my life hasn't changed much other than a once daily pill and more regular visits to the doctor.  There are still times I am reminded about my condition, but I am no longer consumed by the thought of having CML.  I wish you the same short-term response.

 

When I originally posted here http://community.lls.org/message/13419#13419, I was struck by a reply I received from Gunner..."I truly do not have a monopoly on life's challenges".  This has helped me to keep things in perspective as I have gone through tough times (thanks Gunner).

RJF 

Larry Smith   26 posts since
Apr 18, 2009
Currently Being Moderated
7. Sep 1, 2009 6:32 PM in response to: RJF
Re: New to the board

Hi Jamar - I am sure by now if you have been reading in this site, you will see you don't have to worry about asking a dumb or stupid question.  We are blessed evan though we have this terrible illness in our choices of medicine.  You will hear about side effects being differant amongst us and that is true.  I was dx in Nov of 05 and was on Gleevec until July of 08 and have been on Sprycel since then with good results.  When I tell anyone now that about CML - I am able to say that "I have CML, it doesn't have me".  If I have a bad day now, it is not becasue of Leukemia, it is the medicine.

 

Keep posting with any question you have and read thru some of the older posts too.  You may see something that is true to your story.  Keep us informed about your doc and make sure he or she is a blood oncologist for sure and not just an oncologist if you can help it.

 

Take care and God bless.

 

Philippeans 4:6 & 7

 

Larry

Sneezy12   74 posts since
Apr 21, 2009
Currently Being Moderated
9. Sep 2, 2009 6:16 AM in response to: Jamar
Re: New to the board

Hi Jamar, Who is your Doctor at Mayo? Thanks, Frank

RJF   17 posts since
Jun 10, 2009
Currently Being Moderated
11. Sep 2, 2009 3:03 PM in response to: Jamar
Re: New to the board

Jamar - I agree.   The people in this community are great.

 

As for "I truly for not have a monopoly..."   

 

As you have seen/heard already, the side effects of Gleevec hits some harder than others.  I feel greatful - so far - that I have had little to no interuption in my lifestyle.  I am able to work (with a decent amount of travel), manage a little leauge baseball team, and squeeze a round of golf in here or there.  My wife and I still have a social life as well.  Who am I to complain?  Don't get me wrong...I am sometimes reminded about my CML and my mind wanders.  But in the whole scheme of things, if this is my biggest burden I feel blessed.  There are others in my immediate network of family/friends that have bigger problems than mine.

 

RJF

MomMom   192 posts since
Apr 3, 2009
Currently Being Moderated
13. Sep 4, 2009 5:51 PM in response to: Jamar
Re: New to the board

Like the others, I too , welcome you to the boards.  Sorry to meet like this.  I was diagnosed July 21,  2008.  Surprise!  Not the best one you could get, but not the worst.  I asked a lot of what I thought were dumb questions, (still do). have presented some strange side effects, vented my ill feelings,etc. and no one has jumped on me yet!  This is a great group of folks who just happen to have CML.  We are here for each other and the support I have received over the last year has been tremendous.  I couldn't have gone through this first year nearly as well without them. (Ya'll are the best).

 

I am doing well on Gleevec (400) and you should too.  I was diagnosed early on and that's good for us. I understand the nervousness.  I found just talking about having CML was difficult at first. How do you explan to others what is going on and that you take a pill for cancer?  Well, you first tell yoursefl it's okay to be jittery and it's okay to take a pill for cancer.  It can be a roller coaster ride for sure, but it's life like it is.

 

Just keep talking to this group about how you are doing and ask anything anytime no matter how minute it may seem.  If you have questions, they are all important.  Likely, one of us has experienced what you are going through at one time or other.

 

I'm not the medical quesiton go to person, but I can offer prayers and encouragement.  Let us know how taking the G goes.

 

MomMom

Susan61   244 posts since
Apr 4, 2009
Currently Being Moderated
14. Sep 4, 2009 6:40 PM in response to: Jamar
Re: New to the board

Hi Jamar:  Glad you got through the BMB with little pain, or tolerable pain.  I can still remember when I took my first dose of Gleevec on Oct. 25, 2000, I only remember because it was my daughters Birthday on the 25th.  You sort of wait, and think something is going to happen and that you will feel something.

     In my case I felt no different.  I will say as I continued to take it I started to get some of the side effects, but its 2009 and I still take 400mg. a day.  Ask any questions you have at anytime, because we have all been through it.  Always somebody ready to help you out with a answer or support. 

God Bless You

Susan

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