The Leukemia & Lymphoma Society - Fighting Blood Cancers
32 Replies Latest reply: Mar 31, 2012 10:12 PM by momruns RSS

How did you find out you had CML?

0vercast Registered Users
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• Was it an unrelated blood test, or were there symptoms from the CML that led you to go to the doctor?

 

Here's how I found out.  I had a series of nasty legs cramps, bumps, and bruises over the course of a few months from Nov 2011 thru Feb 2012.  I ended up going to the doctor twice over these issues.  The cramps were frequent and surprisingly bad, and they sometimes caused dinner plate-sized dark bruises on my calves, shins, and hamstrings.  Other times, the bumps and bruises just appeared mysteriously.  The first time at the doc, the novice that was filling in for my regular doctor decided not to do any blood tests, but instead sent me to the hospital to have my legs ultrasounded for blood clots.  I was told they were just hematomas, and that I was fine. 

 

The second visit on Feb 29, two months after the first, all it took was a quick blood test to find that my WBC count was at 250,000.  Received the call a couple hours after the visit, and an hour later, I had a suitcase on my shoulder and I was admitting myself to the hospital.  I found out the next morning when I saw my oncologist for the first time that I had the largest spleen he had ever seen or heard of.  It extended from hip to hip, ribcage to waistline, with equal coverage on both sides of the abdomen.  On the CT scan, it looked to me to be about 4-5" thick in the middle.  I had been dieting and working out almost every day over the past few months and I had lost almost all of my excess weight during that time.  I figured the abdominal firmness and minor soreness was normal, due to all of the core and abdominal workouts I had been doing.  I felt perfectly fine and I was full of energy, so I felt blindsided by this diagnosis.  Now I'm curious to find out what symptoms, if any, led people to go get blood work?

 

Thx, Joe

  • Re: How Did You Find Out You Had CML?
    HeatherZ Registered Users
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    I was at work, walking up the stairs after getting some fresh air and passed out on the way to my desk.  I went to the hospital in an ambulance but by the time I got there I felt fine (except for my face which really hurt from hitting the floor) but the docs and nurses were treating me like I was a druggie.  They kept telling me no one passes out for no reason and they kept asking what drugs I had taken.  They did the routine bloodwork and the doc came in and asked why my WBC was so high - it was 40,000 - and I said, "You're the doc, you tell me."  I was admitted because I showed no other signs of infection or anything and they called the Hematologist (sp?) to see me in the morning.  The hematologist told me right away he thought I had CML and was going to do the bloodwork to find out.  That was on a Monday.  By Thursday morning they had the results back to confirm CML, I had a BMB and was released.  That was exactly 2 years ago today. 

     

    It seems most people find out either through routine bloodwork during a yearly physical but sadly for me, my story was a little more exciting.  BTW, I did not break my nose when I hit the floor but did end up with raccoon eyes for a few days.

  • Re: How Did You Find Out You Had CML?
    Happycat Registered Users
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    I'd been getting faint bruises with a rash off and on for a year. But it started with poison ivy, so I figured it was that. I went to a dermatologist twice, two different ones, to ask about the rash and bruising. Neither said much about the bruising, but gave me creams for the rash.

     

    Then I got an allergy shot, one of my usual biweekly shots I've had for over 8 yrs now. I was at work and noticed the injection site hurt and felt like it was growing. It was, due to a huge hematoma. I called my doctor a few days later, because it was too weird to let pass. He felt it was likely due to the high amounts of ibuprofen I was taking for a neck injury, but ordered the CBC. Told me he'd call me in a few days when he got the results back.

     

    He called me at 10 am the next morning, told me it looked like I might have leukemia, and that a hematologist would call me in a little bit to arrange an appt.   The lab had called the hematologist to get his opinion, because my blood smear was full of promyelocytes. He suspected APML, and sent me into a hospital in Boston. Many tests later, I came back with CML.

     

    So here I am today, being treated with CML due to a hematoma.

     

     

    Traci

  • Re: How Did You Find Out You Had CML?
    CML_in_ATL Registered Users
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    I was diagnosed one year ago after running a 5k road race with my 2nd grade son.  My running had been gradually getting slower over the past few months, but I couldn't figure out why.  I saw my doc on a Thursday and he took blood as a precaution.  On Saturday, I ran the race in 26.40, which was slow and winded for me.  Two hours later I received the call to report to the ER with 155,000 WBC.  Yesterday, I ran that same race at a comfortable 21.15, thanks to Gleevec!  Looking back, my time wasn't all that bad considering the level of leukemic burden I had... :)

  • Re: How Did You Find Out You Had CML?
    billronm@roadrunner.com Registered Users
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    Dear Joe,

      I just went for a routine bloodtest, and my wbc was 90,000. Now that I think back I had symptoms, but I just didn't realize it.   Billie

  • Re: How Did You Find Out You Had CML?
    Lizzybee Registered Users
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    I had some symptoms I thought I should mention to the dr, but I didn't piece it all together to figure out that I might have something serious.  I was having increasing difficulty concentrating (as in working 10-12 hours to have 6 hours that I could account for), fatigue, ankles and legs swelling, short of breath with any exertion even going up one flight of stairs to my office, losing weight without dieting or exercising, night sweats, and I was barely doing any cooking or housework at home.  I was due for my every-other-year physical in 2010, but put it off because I didn't have time - cause I was working so hard and doing so little.  Finally in April 2011, I made an appt for a physical, but couldn't get an appt until June 29.  During the physical, the in-house lab couldn't read my CBC, but they did get a very low reading for my hgb.  The dr also noticed my spleen was swollen and I had some edema in my legs, although it wasn't enough that I had noticed it that day.  She added a ton of blood tests to the ones I usually get.  About 10 am the next morning, I got a call from the dr's office telling me to bring my husband and come in.  They told me they thought I had leukemia (wbc 317k, hgb 7.1) and they had a stack of records for me to take to my oncology appt that they'd already made for me that afternoon.  The onc was matter of fact about telling me I had CML.  Until then, I hoped it was all a big mistake.  I had a BMB right there at my first appt.  Two days later, I was hospitalized with fevers and to have a blood transfusion because my hgb was down to 6.5.  I have never been stuck so much; every time my fever went over 101, they drew cultures - 2 sticks each time. After I got out of the hospital, my onc gave me 6 weeks off from work.  Fortunately, my firm has been very flexible with me, because even after I went back to work, I had a hard time working more than 20-25 hours/week for awhile.

     

    Every time I catch myself running up the stairs at work, I am amazed at what I've been through and thankful for the opportunity to live a long life thanks to the meds that are available now.

     

    Heather, I remember reading your story before. I'm so glad I didn't pass out at work and get diagnosed that way!  Every day, I had to stop at the top of the stairs and catch my breath before I went into the office because I didn't want anyone to see me out of breath from walking up one measly flight of stairs. :-)

  • Re: How Did You Find Out You Had CML?
    cleocans Registered Users
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    I was having some abdominal discomfort and felt a large mass.  Went to my Drs and she ordered a Cat scan and blood tests.  I went in for the results a week later and she told me I had CML.   Looking back though I also had night sweats and a dry cough.  I didn't think anything about the night sweats as we were having 100 degree weather for quite some time.  Like Dan my running was suffering.  I ran a slow half marathon two months before diagnosis.  But I thought it was from the increased mileage I was doing.  I was running 50+ miles per week.  At diagnosis my WBC count was 240,000.

  • Re: How Did You Find Out You Had CML?
    Susan61 Registered Users
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    Hi:  I went in for a routine yearly blood test, but I was feeling very fatigued for quite awhile.  I just attributed it to the stress on the job.  Apparently it had something to do with the CML.  I was also having a lot of joint pain, and ignored it because I already had been diagnosed with Arthritis.  If something does not seem right, then its not.  I have so many friends who never go to the doctor because they say they feel fine or they diagnose themselves.

         I do not think people should run to the doctor for every ache and pain, but certain things that seem to be out of the ordinary are worth getting checked.

  • Re: How Did You Find Out You Had CML?
    CallMeLucky Registered Users
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    I was in perfect health with no symptoms at all.  I went for a routine physical and my doctor called me to come back and repeat my blood work because my white count was unusually high (around 35K).  I didn't know any better and just assumed it was an infection or something.  A couple of days later she called me back and said it was up to 65K and she was making an appointment for me that day with a hematologist/oncologist and I needed to leave work and head over to see him.  I asked her to level with me and tell me what I had and she said most likely leukemia.  The hem/onc took one look at my CBC and said "CML".  He did a BMB/FISH/PCR and I was diagnosed officially a few days later.

  • Re: How Did You Find Out You Had CML?
    Sunshine48 Registered Users
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    I went for a new patient appointment since just moved to area. Said I had been working out lost a lot of weight but still felt tired all the time and in a lot of pain. She though I had anemia or thyroid problem so sent for labs... Doc office called me said wanted me to come in to talk to doctor about my lab results, ok didn't think anything about it thought prob at worst thyroid problem... Thirty minuets later got a call from strange number and it was cancer center confirming an appointment for the next day. I was driving and needless to say my heart dropped to my feet and instant tears, I had NO idea and of course the appointment lady wouldn't tell me anything, just said I guess you didnt know and kept apologizing saying all my info because I was kind of in denial. I sat on the side of the highway for a good 20 minuets crying, I mean i was 24 and just found out I have cancer but no one will tell me what kind or any details. I called my pcp back and said ya'll can't do this to me you have to tell me now... You can't make me wait another three hours for my appointment, my nurse said she had no idea whats going on she will call back in 5 minuets he promised... Next thing I know my pcp calls me personally saying sorry that they weren't suppose to call me and said to please come talk to her she wants to see me that I had a blood cancer and left it at that. She said come now shed put me in right away when I got there she said the word "leukemia"... Let me tell ya crappy to find out you have leukemia/cancer period but finding out this way was just poop!! So there's my story too ;-)

    • Re: How Did You Find Out You Had CML?
      tiouki Registered Users
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      I was hiking in the Alps. The first day I was barely able to follow my friends with the heavy bag I was carrying, my heart was racing I had to stop every minute to rest.

       

      After the first day I walked down the mountain, I hitched to get transported to the closest town. I went to the doctor, had a spleen echography (22cm spleen), a blood test (400k white cells, 6.6g hemoglobin so severely anaemic that's why I couldn't walk and was so tired)

       

      I also had fatigue, headaches, pain in the bones (sternum) and enlarged spleen for several months before that but as I was doing ok I didn't really pay attention.

       

      Pierre

  • Re: How Did You Find Out You Had CML?
    mikefromillinois Registered Users
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    Had been having roving pain for a couple weeks that started on my left side above the beltline then wandered around my left shoulder and neck area.  The pain came and went at first but eventually was there all the time.  After concluding the pain was heart related I finally went to the ER and after a half day of testing I was given the news by a wannabe comedian masquerading as an ER doc:  "The good news is that your heart is fine - the bad news is you have leukemia - the good news there is you have the good kind of leukemia."  WBC was 220,000 and my spleen was swollen.

     

    Hindsight: in the months leading up to the diagnosis I had moderate fatigue, excessive bruising, and had been losing weight - much of which was muscle. 

    • Re: How Did You Find Out You Had CML?
      hannibellemo Registered Users
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      Ok, it's kind of hard to top "I was hiking in the Alps"!  So, how about, "By phone as I was resting after a colonoscopy"?  Truth, I had had blood tests done that morning because I was fasting anyway and they discovered my extremely out of whack counts. They had never seen counts that high and assumed that I had acute leukemia and set me up at Mayo for that afternoon.

       

      I had been to the doctor several times since August with upper left quadrant pain. They finally did a CT on 12/6/08 and discovered my "markedly" enlarged spleen. I was already scheduled for the colonoscopy on 12/8/08 - no connection to the symptoms.

       

      Pat

      • Re: How Did You Find Out You Had CML?
        billronm@roadrunner.com Registered Users
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        Hi Pat,

           Boy hiking in the alps, is a tough act to follow, but after a colonoscopy? Wow, When I got the phone call it scared the s--t out of me. Well I know you didn't have any s--- left I hope you didn't lose any vital organs!

         

        Pierre, I would love to read your autobiography, I bet it's full of adventures!

         

        Tedsey, I had bw 7mos before dx and it was fine. It seems strange that this cml just turns up out of the blue. Because of my vascular problem, I had been getting bw every six months for years. Boy cml was the last thing I ever expected to hear!                                   Luv U All Billie

        • Re: How Did You Find Out You Had CML?
          simone4 Registered Users
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          Well, there is one common trait with those with CML.  We are clever, right?

          Billie, Pat's response was so funny (with her dry sense of humor) and then

          your reply to Pat about scaring the s...t out of you, but not in Pat's case.

          And then Sarah's milk cow lept on top of her....

          I have wondered how this many people from all around the

          world "get each other" so well.  Amazing to me.

           

          To answer Overcast's question, nothing interesting.

          I'd just lost both my parents (in France), came back here

          and went to my doctor for routine blood work. He sent a

          nurse to my house the next morning to repeat the test and

          then called me in to give me the bad news.  Sent me the next day

          to the best hematologist in town and he has been great. 

          I hope you do as well as the majority of us have.

          Simone

          • Re: How Did You Find Out You Had CML?
            Marnie Registered Users
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            I had a weird bruise on my leg that just wouldn't go away. It didn't hurt, but had a huge lump in the middle.  My husband kept telling me to go to the doc, but (stubborn as I am) I wouldn't.  One of my colleagues at work saw it and suggested that maybe I had a blood clot that would let loose and kill me.  She scared me so badly that I made an appt for the next day.  Doc thought it was blood pooled under the skin and stuck in a needle to try to pull the blood out, but nothing came out.  So he decided to run a blood test to see if I had an infection going on.  Got a phone call from him a few days later to come in to re-do the test.  He said my white cells were incredibly high, but it was probably a lab error.  He took more blood and ran the tests.  I got home from work to a message on my machine saying I needed to come in to see the doc immediately, but I was currently involved in contract negotiations for the teachers in my school district, so I didn't call him back. . .just too much important stuff to do.  Got home one day to another message that he had made an appt with a specialist for 9:00 the next Monday (first day of summer vacation) and he gave me the address.  When I drove up to the address that Monday. . .it was the Cancer Center.  I walked in in a bit of a trance wondering why the hell the doc had sent me there.  Met with the oncologist and as he talked to me about cml, I kept thinking "why the hell is this guy talking to me?  I just have some kind of infection going on!"  Finally about half way thru the meeting it dawned on me that this doc seriously thought I had leukemia.  I was supposed to fly home to MN to see my family the next week, and the hardest thing I had to do was call them and tell them that I couldn't fly home because I was scheduled for a BMB to see if I had leukemia. 

             

            Later, I realized that I'd had signs. . .just didn't recognize them.  I'd had horrific night sweats for about 3 years.  I had attributed it to early, early peri-menopause.  Obviously, now, I realize that it was something completely different. 

             

            My biggest concern, after getting the BMB results and confirmation of cml, was to get my white count down (265,000) to a level that my doc felt was safe, so that I could attend dirt-bike camp in mid-July, and then on to a 3 week road trip on our big motorcycles.  Gleevec did the trick and I had a blast at dirt bike camp (though I was totally freaked out about taking a hard fall) and only had a few instances of Gleevec-induced panic (riding over Lolo Pass in Idaho. . .no bathrooms for miles and Gleevec doing its thing).

             

            Seems like most of us catch it with routine blood work.  I'm just really lucky that my work colleague scared me enough to send me to the doc.  Otherwise, I'd be in much worse shape. . .who knows if I'd have waited until Accelerated or Blast Phase. . .scary to think about!

             

            Marnie

  • Re: How Did You Find Out You Had CML?
    CindyS Registered Users
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    I went in for my yearly physical and routine blood tests showed an elevated wbc - only 33,000 so I think it was caught pretty early.  I had been quite tired, but just chalked it up to a lot going on at work and home and didn't think anything of it until after the blood test.  I tell my husband I felt great until they told me I was sick!!  Cindy

  • Re: How Did You Find Out You Had CML?
    Tedsey Registered Users
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    Yearly physical.  Ironically, my spleen swelled up about a week before my appt.  So, I asked to get in sooner (thought I had a hernia because my friend had one after giving birth).  Ironically, again, my WBC was 180,000K and I had a normal CBC 8 months prior to dx.  I felt fine.  Never felt sick.  Had no bruises, fatigue, cramps, pain, etc.  I did have mysterious weight loss for 3 years prior to dx though.  As my husband and I worried, I went to a couple docs and was also sent to specialist, (wrong one though), to check it out.  They all told me it was because I was nursing 2 babies and not eating enough.  Clearly, they were wrong.

     

    Tedsey

  • Re: How Did You Find Out You Had CML?
    sarah Registered Users
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    i was dx on oct 23 2009. i was out in the pasture with my milk cow. as i was going thru the gate she decided to go for a piggy back ride well needless to say when a 2500 lb cow jumps on your back u go down we took out the gate. i hurt my side. my left side continued to get sore and i noticed my stomach was rock hard. i had no insurance so i just went with the pain. i continued milking my cow and goats feeding the stock and heaving hay bales. life went on !! i was short of breathe(blamed on smoking)legs,belly back were always in pain. finally went to the hospital(3 mos later) they did xrays and blood work.well the next thing i know i have a appt with the big hospital 250 miles away for a cat scan,went for it was sent immediatly to the cancer center and was told i have cml+ph. put on hydrea,then gleevec,then tasigna and now sprycel. i am also told i show mds.went to oshu in portland oregon was told i might need a bmt. but for now watch and wait which is hunky dory for me as i dont want a bmt. rather just pop a pill till the end.oh yeah when i was dx my spleen was HUGE. went from ribs to hip around to back bone and past my belly button. but at present i am holding my own .other than the stupid fatigue and some muscle bone pain i am still kicking. i just made 2 trips by myself from idaho to oregon and back again. i try to stay active. i dont do stairs well or long distance walking. but heck i am still kicking,breathing and a b@@@@@@g

  • Re: How Did You Find Out You Had CML?
    sdl722 Registered Users
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    My wife and I went to Maui last March for Spring Break.  While there we took surfing lessons.  Naturally being a beginner, I fell a few times.  And I also got hit accidentally by another surfboard.  The day after the lessons I noticed a large bruise on my inner right thigh.  At first I thought it was related to the falling or being hit by the other surfboard.  However, over the next several days  a few more large bruises started popping up on my body on my inner thighs and side of hips.  I had never seen bruises like that before so I decided to go in for a physical (hadn't had one for years).  My physical showed my WBC at 450K, RBC at 3.26, and HGB at 9.9.  In thinking back to other symptoms, a week before my physical I saw my parents and they later said they thought I didn't have much color in my cheek and that perhaps I had lost some weight.  Additionally, in reflecting back, my work outs at the gym we a bit more challenging and I was having night sweats (but I thought the night sweats were just because I was hot). 

     

    Originally we we supposed to go to Egypt for Spring Break.  But when the revolution broke out in Jan 2011, we changed our trip to Maui.  Had we not changed our trip, I don't go surfing and get those bruises. It would have probably been a lot longer before I ended up going to the doctor and my situation could have been a lot worse.  So in a way the Egyptian revolution saved my life.

     

    Stephen

    • Re: How Did You Find Out You Had CML?
      momruns Registered Users
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      Stephen,

      Small world, Jim and I were to go on an Egypt tour March 2011, in January when the tour company cancelled all the tours that next week Feb 4th I went for routine blood work and there it was a WBC of 70, CML so the first week in March we went on a cruise.  It has been a year of changes and challenges.  So we might have met in Egypt instead of the CML website. 

      Loreta

  • Re: How Did You Find Out You Had CML?
    kellbell Registered Users
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    hi, i was just diagnosed a little over 1 month ago.  I was going to my dr. often over the past couple years for being tired, cough, pain in side.  I was told to rest and that its a cold. My old dr. said i had anxiety.  Then about 6 months ago I asked to have testing done because I was so tired and thought I had allergies.  The allergy test came back normal but the cbc was high wbc.  I had to kep going back to have it checked, took antibiotics for a possible sinus infection and the wbc was still high.  I was refered to a hematologist and he also tried antibiotics and rechecking the cbc.  My wbc count kept going up.  It was 19.9 by this time so they did a bone marrow test and found cml.  My dr. told me to come in to tell me the results and I was so scared because I didn't expect to have anything serious.  I was thinking it was just an infection or something little and easy.  I never have really been sick never even had the flu. I was happy though to find out finally what was causing all these symptoms and am feeling better since taking sprycel and my blood count is normal.   I also just wantd to say that i am new to this and and i've been reading this site whenever I have had any questions , It's been very helpful. thanks

     

     

                                                                                                                                             Kelly

  • Re: How Did You Find Out You Had CML?
    luvmybees24 Registered Users
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    I was having heart palpitations (which the dr. said has nothing to do with my CML). I had had them for years but they got really bad around October 2011. I got a flyer in the mail telling me of my new doctor ( I was on a county health plan) and I thought "well I guess I could give this guy a shot and see him for my heart palps" Those 2 things most likely saved my life. I went in on Halloween 2011. They ran blood tests and thyroid tests just to see why I was having heart palps. A week later the WBC came back with 28,000 and my other cells were all off the chart. The doctor told me this was REALLY concerning but not to worry, they would re-run the test and see if it was a fluke. Well 2 days later they called me and told me my WBC were 31,000 and I better go straight to the hospital and check myself in for testing. I totally freaked out, packed a bag and cried the whole way there. I was in the hospital from Fri night-Monday am when they did my BMB, told me I had CML and sent me home with instructions to see an oncologist within 4 days to get on Tasigna. Scary as hell but I am really lucky it was caught so early. My spleen was never enlarged.

     

    I did have hip pain/a few odd bruises in February 2011 and October 2011. My friend said "Gee, I hope you don't have leukemia!!!" Little did I know....

  • Re: How Did You Find Out You Had CML?
    mbrown2010 Registered Users
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    I had fatigue and night sweats for a couple months. Thought it was just menopause. Then came down with flu and fevers of 105. Dr. put me on antibiotics till lab work came back 4 days later and sent me to hospital. At hoapital, they blasted me with antibiotics trying to get my fever down and ran endless test. 5 days later, I had C-Diff (thanks to the antibiotics killing all my good bacteria), CMV, (similar to Mono), and my BMB showed I had CML. Had an oversized spleen.

     

    Looking back, I now know I had not been feeling well for some time. Sypmtoms were fatigue, night sweats, feeling like I was catching a cold every other week, and bruising. Never went to doctor because I thought even though I was done with menopause, maybe still had some going on and just getting older. Also had just finished dealing with an unexpected death of my Mother and a very close Uncle. Have never been really sick before. Was dx in May of 2011...still trying for CHR. Getting close.

    Melanie

  • Re: How Did You Find Out You Had CML?
    Stevea Registered Users
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    I was coughing for about 2 years and no one could tell me why or stop it.  Finally while at the doctors office again they took blood from me before I left (only because my mom asked them to, I was 19 years old at the time).  A few hours later they called me and told me to go to Moffitt Cancer Center where they had a bed waiting for me (thats all they said on the phone).  We went and I was diagnosed with CML the next day.  Looking back I had most of the symptoms, I just didn't know and the doctor didn't see them.

     

    I also found out later that I had walking pneumonia and continued to cough for 2 more years until I got full blown pneumonia and was in the hospital for a week with 105+ fever (I don't remember that week at all because my fever was so high and it was for Christmas).  After that i stopped coughing.

     

    April 19th will be 10 years for me.

  • Re: How Did You Find Out You Had CML?
    PhilB Registered Users
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    I'd been struggling to throw off a cold for weeks then had a sudden deterioration in my vision which turned out to be leukaemic retionpathy- the gloopy blodd from the high WBC count won't circulate properly in the tiny capillaries in the retina.  I wnet to the doctor about the eye and he sent me to the eye clinic they did a blood test and sent me to immunology without saying why.  I expected to be told I had a virus or something and was told I had Leukaemia.  The nurse waited until the doctors had leftb the room before telling me I would want to go and check that my life insurance was in order.

    Strangely the three charities my wife and Ialways  donated to regularly were cancer research, the blind and the lifeboats.  After my eyesight going haywire (fortunately it recovered) and being told I have cancer, I've been very careful to avoid boats.

  • Re: How Did You Find Out You Had CML?
    KerriD Registered Users
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    I went in for my annual gyno appt with the nurse practioner in Aug 2011 and she was asking about my cycles, I replied they had gotten much heavier over the last year.  She recomended a CBC to make sure I wasnt anemic.  She then called me less than 24 hours later asking me to come in to do a second blood draw because my numbers were "wacky"  I nervously went back and then was on pins and needles for 2 days repeatedly calling them back for results and no one would tell me my results of the second test. I finally got someone I had never talked with to give me the the numbers  WBC 40 and Platelets were 847,000...    When I aked her what I needed to do next she said call your primary care doc..I did not have one at the time ( i do now) I said I didnt have one and she said I should call a hemotologist.  I was so upset and confused.  My brother is the VP of sales of Clarient a pathology service in California. (I live in Kansas City)   My brother and his family happen to be in town visiting at the time.  He knows alot of the oncologists in town and reccomended an hemo/onc.  I called and it was going to be 3 weeks before I could see the onc.  At this point I had NO idea how serious this was....I have a close girlfriend that is a nurse and she wanted to see the labs.  So I sent the report to her and she called and said " we arent waiting 3 weeks to see someone"  My brother sent my lab results to a pathologist friend of his and it was my brother that called that night and told me it was probably CML.  My brother made some more calls and I was in to see the hemo/onc that I still see the next day.  He comfirmed it looked like CML and set up my BMB.  I had that done under concious sedation. Got the confirmation of the Philadelphia Chromosome and started Tasigna.  My blood counts were back in the normal ranges in 2 weeks after starting Tasigna and reached MMR in 4 months.  I feel lucky.

  • Re: How Did You Find Out You Had CML?
    JMGrad Registered Users
    Currently Being Moderated

    I went to my PCP after a trip to the ER for pneumonia. When I saw her she ran a CBC and while my white count was up there were "cells that shouldnt have be there" so she referred me to an Oncologist. The oncologist I went to see told me that my PCP had sent me for a BMB - news to ME - but he thought that my white count was up because of the steriods I was on for my pneumonia and wanted to wait a month and see. Well one month of testing turned into another turned into another turned into another. I went to my GYN for routine testing where HE did a CBC and once the results were back he told me I needed to see my oncologist. Turns out my white count was up to 17.5 and now my platelets were up to 745,000. When I consulted my oncologist about it and asked for my prior labs it turns out my platelets had been up for a couple of months. If my GYN hadnt given me the printout of my results who knows how much longer we would have done the "lets wait" dance. I had gotten a terrible bruise on the back of my rt arm around this time and that was when I decided enough was enough. I called another oncologist for a 2nd opinion (I have a young daughter and the waiting game was mentally driving me insane) and when I saw her a year after starting this journey she couldnt believe my prior oncologist didnt do any blood work other than a CBC. She did my BMB/blood work there in the office and the rest is history. That was this past January.

  • Re: How Did You Find Out You Had CML?
    jcoon Registered Users
    Currently Being Moderated

    my husband and i were ready to start trying for a baby.  luckily i decided to go in for a physical just to make sure i was healthy and ready to go.  i was getting large bruises on my thighs, but assumed it was nothing and thought i just needed to eat better and take vitamins.  I had also been getting crazy heartburn, turns out it was due to my huge spleen pushing on my stomach.  anyways, i went in for a physical and had it done by the physicians assistant.  When the results came in i was told to go in to discuss my results with the doctor.  well the doctor was half asleep during my whole appointment, and told me i was just a little anemic and my cholesterol was a little high.  get this, he told me everything else was normal!  he seemed to look past my 150,000 white blood cell count.  on my way out of the dr.s office i decided to ask for a print out of my results.  i went to work, then went home and started looking at my results.  i noticed the WBC count, and my knoweldge i gained from pathologists assistant school told me it looked like leukemia.  i started freaking out and crying and couldnt sleep all night.  called the dr first thing in the morning and was angry with them for not pointing this out earlier.  they told me to come in right away and repeat the blood test, they said it was most likely an error.  well it wasnt.  i asked the dr. to palpate my abdomen, because i was concerned my spleen was enlarged.  they agreed, it felt enlarged.  the next day i was meeting with my hemeoncologist and he told me it looked like CML.  ive been on sprycel since and had MMR after 4 months of treatment.  we are hoping to be able to start trying again for a baby soon.

  • Re: How Did You Find Out You Had CML?
    0vercast Registered Users
    Currently Being Moderated

    Thanks a lot for the replies.  This was interesting to read. 

     

    I didn't realize that night sweats were a symptom of CML.  I had noticed a little of that going on maybe a dozen times in the months prior to diagnosis.  I didn't think much of it.  I had purchased some new fleece sheets and a down comforter at the beginning of winter since I keep since thermostat timed to drop the house down to 60 at night.  The heating bills are high enough in Minnesota during the winter.

     

    There are also a couple other symptoms that given hindsight, were very likely CML-related.  I noticed after my spleen shrank and no longer compresses my stomach at all.  I don't get acid reflux/heartburn when I sleep anymore, nor do I get "full" as easily from small portions of food.  I had noticed these things going on, but attributed the lack of a big appetite to my dieting, and the heartburn to just getting older(29).

  • Re: How Did You Find Out You Had CML?
    crob20 Registered Users
    Currently Being Moderated

    Re: How did you find out you had CML?

    I had routine lab testing in December 2008 and had an elevated LDH. I don't really know if the only thing I had done was a liver profile because I was on Lipitor for high cholesterol but probably. My MD thought it was an aberration and it wasn't that high.In March he retested and it had tripled. He did a CBC and called me at work the next Monday to tell me I had leukemia.My WBC was 118,000 and Platelets were very high also. (You can tell I've relaxed a lot because I don't remember all these figures like I used to!) Fortunately for me, my niece is a PA who worked with an Oncology group and was able to get me an appointment 3 days later. I had a BMB and found I had CML. I had been tired but thought it was just normal. No other symptoms! I never even got colds.

     

     

    Life is good. A comment Trey made on here really stuck with me. He said there would come a time when leukemia would not be the only thing on my mind. That is so true! I love this web site and am so glad all of you are here. You have made a difference in my life. For those of you just diagnosed, I understand how hard this is. Every once in a while as I was continuing my "normal" life I would go "OMG! I have leukemia!"

    Hang in there!

     

    Carol

    • Re: How Did You Find Out You Had CML?
      Teresabourgeois Registered Users
      Currently Being Moderated

      I had the strangest tongue problem that no one could DX, and I just generally felt crappy.  So I had allergy testing done.  The test came back normal but my WBC for 22K.  I was referred to a oncologist that ran test.  I was actually cleared from him.  Then 1 week later he called me because the genetic part of the flow  cytometry test came back with a positive Philadelphia chromosome. I had also lost some weight which I was happy about  

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