32 replies to this topic

[0vercast]

• 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

[HeatherZ]

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.

[Happycat]

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

[LivingWellWithCML]

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...

[Lizzybee]

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. :-)

[cleocans]

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.

[Susan61]

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.

[CallMeLucky]

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.

[Sunshine48]

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 ;-)

[tiouki]

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

[mikefromillinois]

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. 

[hannibellemo]

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

[CindyS]

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

[Tedsey]

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

[idahobeavers]

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

[sdl722]

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

[kellbell]

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

[luvmybees24]

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....

[Melanie]

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