32 replies to this topic

[Stevea]

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.

[PhilB]

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.

[Judy2]

Hi Phil,

I know this is serious but I couldn't stop laughing at the last line of your post. Thanks for cheering me up, I needed that.

Judy

[KerriD]

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.

[JMGrad]

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.

[jcoon]

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.

[0vercast]

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).

[crob20]

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

[simone4]

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

[Teresabourgeois]

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  

[Marnie]

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

[momruns]

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