26 replies to this topic

[ritan/]

so--i've been reading a variety of threads here and i find that i am having trouble keeping track of who people are.  silly, i know, but i like to have bits of info to identify with people... i find it helps on message boards, at least it helps me.

so.... if you feel like it introduce yourself, when were you dx, where do you live, what meds you're on, etc. 

[ritan/]

i'll start

i'm rita; i live in rapid city, SD;  i was diagnosed early sept, 2011; i'm on gleevec

[pammartin]

Hi Rita

Pam = Diagnosed October 6, 2011, I am currently on Sprycel and Hydrea, my platelets were extremely high, so this is not a regular scenario, Allopurinol and Aspirin.  I live in Western Pennsylvania.  I have till next Tuesday for the Hydrea, then I have to stop taking it, something about me growing horns combining the first two medications after two weeks?

Welcome

[Taylor]

Hi Rita,

My name is Taylor, I'm a 25 year old male in Oklahoma.  I began displaying symptoms, primarily by developing blind spots in my eyes, at the end of May 2010.  Later there was fatigue, increased infections, and a lump in my abdomen (spleen), among other things.  I was finally diagnosed with leukemia January 31st, 2011, when the ophthamologist sent me to have blood work and my white count was 230,000.  I was in the hospital for treatment (hydrea, allopurinol, and leukopheresis) and diagnosed for CML by biopsy on Feb 6th I believe; I remained in the hospital until February 8th, when I started Tasigna.  I achieved PCRU almost exactly 7 months later--on the 22nd of Sept or so I found out that my bone marrow biopsy sample from Sept 6th showed no molecular evidence of the disease.

[mikefromillinois]

Hi Rita,

I'm Mike.  60 years old from the Chicago area.  Diagnosed July 20, 2011.  Went to ER with shoulder pain (thought it was heart related).  Turned out to be my spleen was swollen and "referring" pain to other areas.  WBC was 220K.  First month on hydro and allo.  Switched to Sprycel - have been on Sprycel for 2 months.  Minimal side effects.  PCRU 100 days from diagnosis.  BMB was <5% blasts.

Wishing you well...

Mike

[grannyd]

Hi, I'm granny d.I live about 2 hours south of  Cleveland  in a small town in Ohio Had my routine BW done November 18th, 2010. Had elevated WBC, another BW to make sure it wasn't an infection. WBC higher. Had a BMB Dec. 28th. Diagnosed finally Jan. 10th, 2011. Went to Cleveland Clinic & was told to take tasigna. My husbands insurance denied me until Jan. 28th. Started Tasigna Feb. 1st 2011. Was in CMR 6 months later & just had my 3 month PCR--still in CMR!!!! Hope I can remain in CMR--& stay on tasigna, I have had a very good response to it, with tiredness as the only side effect!!!!

[cleocans]

Hi, I'm Kim.  I live in SW Oklahoma.  I was diagnosed in July 2011.  I am on 100mg of Sprycel.  This coming Tuesday I will find out the results of my first PCR test.  I am excited and nervous about that!  Rita, I have been following your onc stories.  As I will be moving to Rapid City in about 2 years when DH retires from the Army.  I really like my onc and I dread having to find a new one.

[ritan/]

oh my gosh! what will bring you to rapid? 

[cleocans]

My husbands family is there.  That's where he wants to retire.

[SB3]

Hi. I'm Sharon. I was diagnosed on Sept. 23, 2011 after routine bloodwork showed elevated WBC -- a bone marrow biopsy confirmed the diagnosis. Asymptomatic except for fatigue and night sweats, but as the mother of three active children and someone who is approaching 50, those symptoms didn't seem out of the ordinary. I'm on 100 mg of Sprycel and my WBC count was within normal range within 2 1/2 weeks (although it wasn't high to begin with at 19,000). As my husband likes to say, I don't think the doctors could have caught the CML any earlier. Having very few side effects on Sprycel -- some digestive issues and scalp itchiness but nothing too bad and expect those to go away soon. My fatigue is slowly improving. My first PCR won't be for another month so I'm a bit anxious until I see those results. I live in Charlotte, NC.

[KerriD]

Hello,

I'm Kerri from Kansas City... I started this journey after routine bloodwork showed elevated WBC and Platelets. I had no symptoms other than fatigue and as a 47 year old working, single mom of 2 boys ages 9 & 12, I thought I was suppose to be that tired.  Confirmed diagnoses after a BMB and started Tasigna on 8/15/2011. My bloodwork returned to the normal range 2 weeks later on 09/01/2011 ( my birthday),  I have not missed work except for DR appts and my side effects are not bad.  I had a upset tummy and fatigue for the the first few weeks but now I am making it through the day without laying down.  I do have the scalp tingles and some rash issues but Claritin seems to help ( when I remember to take it)  I feel very lucky and blessed to have caught it early, to have a great onc Dr. Ethirajan and good health insurance (so far). And oddly enough my older brother is the VP of Sales of Clarient ( a cancer pathology company) so he has helped direct me to the right docs and when quest labs couldnt seem to figure out how to test for BCR-ABL quantative...he had me change to draws at the local hospital and my bloodwork all goes to Clarient.  It has been a trip for him as well....seeing the patients view first hand.

What I am trying to say is ...I feel lucky to be diagnosed with this disease at this time...when it is so treatable.  It has given me a richer, deeper look at my life and the people I love.

Staying in the Light,

Kerri

[Lisal]

Hi everyone,

Lisa from Chicago area.  I was diagnosed in May 2007.  Been on 300mg Gleevec since then. Routine bloodwork showed above normal WBC and other counts in Aug 2006, but it took 9 months to diagnosis due to a myriad of other tests I ended up having. ( When the hemologist said to have a bone marrow biopsy, I should have just have it!)  Currently looking to switch to Sprycel due to fatigue from Gleevec.

Also, I am looking into starting a CML networking group in the Chciago area.  Stay tuned for more information!

[Lizzybee]

Hi Rita,

I'm Elizabeth and I live near Raleigh, NC. I was diagnosed on June 30, 2011 after going to the doctor for a routine physical the day before.  My wbc were 317k and my hgb was 7.1. I started hydrea and allopurinol on July 1. I was hospitalized July 2 when I starting spiking fevers. It was surreal being wheeled from the ER to the Cancer Unit when 3 days earlier, I thought I was a normal, healthy, tired middle-aged (age 47) working mom.  After 2 units of blood and repeated cultures to confirm there was no infection, I came home on July 4 with instructions to take 6 wks off work and avoid stress.  My wonderful onc also told my husband that he should do the housework for six weeks. I started Tasigna on July 12 and I'm waiting for the results from my first pcr.

[Marnie]

HI, all. . .

Marnie from Denver. 47, middle school teacher.   My introduction is on the roll call thread, so I won't retype.  Started on Gleevec in June 09, now on Sprycel.  Welcome to the club!  Lots of new names out there lately, so another introduction thread is a good idea.

[Marnie]

I still have 3 months of being 47, darn it!!.  And then I still have another year of being in my mid-40s.  Here is the accepted scale:  Early 40s = 41 to 46.  Mid-40s = 47 and 48.  Late 40s = 49.  Though as I recall, the scale was adjusted a couple of years ago (when I hit 45 and decided that 45 belonged in the "early 40s" range).   Don't make fun of the scale.  My husband does and that gets him nothing but trouble.

[bkspecialk]

Hi Rita,

I am 47 yrs old. I was dx July 2010.  I had exrutiating pain in my left shoulder and side.  I thought I possibly had thrown my shoulder out of place.  I went to the emergency room.  My platlets were 1.1 million and WBC was at 228.......and soooo the journey began.   I was living in Las Vegas when I was dx...I now reside in Washington State.....and yes it is getting chilllllyyyyy. lol.

I was on Gleevec 400mg  for the first year.  I started taking Sprycel 100mg the end of August........more tests in two weeks and hoping for progress!

I have a 26 year old son who is in the Marines.......has been for a few years.  He is an awesome person.

I have a 12 year old daughter(I know I know)...yes it was a shocker. Lol.   She is also a very good person...no touble...good grades...lots of help to me.

My husband is very supportive of me................I truly feel blessed.

Good luck to you and stay warm!

Sherry

[Happycat]

What, do we have to fess up to birthdays, too???

I just hit the magic 45, so now my work-based life insurance premium just doubled!   I hope all these senior discounts I keep hearing about will make up for all the added costs!

Traci

[Happycat]

Hi, Rita,

I'm Traci, live in the Boston area, and was dx'd back in April 2011.   I just typed my dx story on another thread, and the other info is in the Roll Call thread... and I'm too lazy to retype! 

I'm taking Gleevec, and all is going well.

Welcome and sorry you had to join the club!

Traci