70 replies to this topic

[tiredblood]

I had just begun to notice that my WBC count was slightly elevated on a few past CBCs (like over a few years span of time). About that same time, I changed PCPs.  The new PCP had me get initial lab work and he picked right up on the elevated WBC count and asked me if I knew what it could mean.  I said, "Yeah, cancer."  He had me come back in a few weeks for a peripheral blood smear and if this was abnormal his plan was to send me to a hematologist.  It was abnormal, but thankfully with no blast cells.  I went to the hematologist and the PCR tested positive for the Philadelphia chromosome (123%).  After learning I had CML, I gathered all my past lab reports and it appeared my WBC count had been elevated for a few years with no one picking up on it.  It certainly explained my lethargy I had been having for quite some time.  I achieved a complete molecular response early on.  Never had a bone marrow biopsy though.

[kavis]

Routine physical for me.  But in the months leading up to it, I had night sweats (thought it was a lingering flu), I had a lot of joint pain (thought it was college football catching up to me), I tried to run a mile and couldn't even finish (have run many half marathons)...and I was also pretty pale and had lost a lot of weight.  Again, I just kept explaining it all away, but I was in enough pain that I asked my PCP 'why am I in this much pain as a 35 year old?'  He said 'we'll run your blood and see if you're allergic to something.'  He thought it was diet related.  He called me back in 4 hours and said I needed to get to the ER, my white blood count was the highest he'd ever seen.  I didn't really believe any of it, figured it was a mistake, but of course went to the ER when he insisted.

 

It was pretty quick from there, the ER physician handed me a stack of leukemia printouts, told me they weren't sure what kind yet but the blood results are basically only caused by one thing:  leukemia.  That was that!  I realized I wasn't going to be leaving the hospital, of course I didn't pack anything or prepare for that.  Started on hydrea the next morning, spent 3 days in the hospital then started Tasigna the day they cut me loose.

[amcantley]

I went to my pcp about a bruise on my thigh which developed after I brushed against a side table. The bruise was huge and developed a hematoma in the center. It was not healing, two months later it still hasn't healed entirely. He ordered cbc since it had been a couple years since I had blood work done.

 

My husband and I went away for our anniversary, pcp office called me on our anniversary inquiring how I was feeling. I felt fine. So they said the lab must have messed up but to come back in for a new blood draw when I returned. I did. My pcp called me at 8AM the next morning saying I needed to come in with my husband and that the labs weren't wrong. My wbc was 197,000 and it was most likely CML. It was a very emotional day. I went to onc the next day and had my BMB. I began Sprycel 100 the next week.

 

Looking back there were other symptoms that I just ignored. Like the night sweats which I just chalked up to menopause at age 28, I've had them on and off through the years since then. The feeling of fullness, and being tired.

[lanadal]

Went for a refill on estrogen pills (way back in 2003 when they did that). The doctor thought I looked pale and ordered blood work. The next morning she called and said she had made me an appointment with a hematologist but wouldn't say exactly why. I began to really wonder when the appointment was at a cancer center and the receptionist patted my shoulder and wished me "Good Luck Honey" as I went in to see the doctor.  That  doctor examined me, didn't tell me much, but did some labs and called me at home to tell me I had treatable leukemia.  I had been really tired, but thought I needed to exercise more. Then began the "new normal".

[scuba]

We went to a George Rodrigue event in New Orleans and during the gallery opening, I felt faint and had to sit down suddenly. It was noticeable to a nearby group of people. I had a low grade fever and incredible fatigue. I thought bad champagne. The fatigue came on suddenly it seemed back in early 2010. On the flight home next day, it occurred again and my heart began to race. My wife decided I had to see a doctor - a cardiologist. Heart issues run in my family. So we visited a cardiologist and he told me my heart is fine. "Really, I said - it's racing at 90 beats per minute and I have 99 degree low grade fever?". He said heart's fine - something else is going on - go see a hematologist - two floors down.

 

We went to visit his hematologist recommendation and he took a blood sample and came back and said my WBC's are elevated at 20,000 - could be an infection or something else. Will need to send blood samples out.

 

Blood work came back and the doctor told us, "I have good news and bad news. Bad news is we believe you have CML. The good news is it's the one leukemia that is very treatable". Blood was 100% CML by FISH and lots of blast cells. My wife cried like I have never seen her. I was just simply curious - like this could not be real.

 

I was put on 400mg Gleevec that day and scheduled for bone marrow biopsy. BMB showed a bad marrow - borderline accelerated, other chromosome anomalies (they thought I had MDS as well) and lots of blast cells. PCR > 155% (FISH = 100%).

 

Back in the day, May 2010.

[alc999]

This is a great thread, it does make me feel less alone!

 

My diagnosis was in January 2015 and was pretty easy compared to some here, but of course still a major shock!

 

I had a regular check up with a new PCP. Hadn't been to one in years because of my "busy life." Had been feeling very run down and tired, but in the previous year had been dealing with a father in hospice for lung cancer and a husband (now ex-husband) who left. Plus working full time and a child. So I figured all this was the cause of how bad I felt. My new PCP had a CBC done at her office, then called me the next day at work because my WBC was 220,000. She told me it was probably leukemia and she had set up an appointment for me the following day with an oncologist. The next 24 hours until that appointment were the worst in my life, I was convinced I wouldn't see my son grow up! So I was very relieved the next day when my oncologist told me it was most likely CML and thoroughly explained what that meant. Diagnosed in chronic phase with a PCR of 195% and a FISH of 100%. On Gleevec 400 mg since February 2015. As of August 2015, PCR 1.6% and FISH at 0. Feeling very lucky!

[RayT]

I was diagnosed in January 2014.  I was diagnosed with Hodgkins Disease in 1982 and underwent Radiation Tx in 82-83 and chemo after a relapse in 1984.  I've had 1/yr visits with my oncologist since, mainly so we could say, "Hi, we're both still alive, see ya next year."  This time, he said, "Are you running an infection? Your WBC is 23,000." (I'm asplenic since the hodgkins staging.) "No, I'm feeling fine."  "Come back in 3 days and we'll recheck your bloodwork."  Three days later, WBC was 26,000.  A week later, I went septic while in the onc's office. BMB a day later confirmed suspicion of Ph+ CML.  Needles to say, my onc and I see each other at least 1/month now... 

[Marnie]

I went to my pcp about a bruise on my thigh which developed after I brushed against a side table. The bruise was huge and developed a hematoma in the center. It was not healing, two months later it still hasn't healed entirely. He ordered cbc since it had been a couple years since I had blood work done.

 

My husband and I went away for our anniversary, pcp office called me on our anniversary inquiring how I was feeling. I felt fine. So they said the lab must have messed up but to come back in for a new blood draw when I returned. I did. My pcp called me at 8AM the next morning saying I needed to come in with my husband and that the labs weren't wrong. My wbc was 197,000 and it was most likely CML. It was a very emotional day. I went to onc the next day and had my BMB. I began Sprycel 100 the next week.

 

Looking back there were other symptoms that I just ignored. Like the night sweats which I just chalked up to menopause at age 28, I've had them on and off through the years since then. The feeling of fullness, and being tired.

Wow. . .this is exactly what happened to me. . .bruise on thigh with hard lump in the center.  Doc ordered blood draw and my wbc was over 200,000.  Doc had me come in for second blood draw, figuring the first was in error.  Then Doc called and left messages that I needed to call him back, but I was in the middle of teacher contract negotiations and ignored his calls.  Finally, he set up an appointment for me with a hematologist.  When I arrived at the address and saw that it was a cancer center I was flabbergasted. 

 

I also ignored the night sweats. . . figured it was peri menopause at 45.

 

Your story was like deja vu.

[Tedsey]

Went to yearly check up after just having a baby.  Had some acute pain under ribcage I asked my internist about while there.  We were packed to leave town the next day.  Got a call that evening that my WBC were high and to get it rechecked at the ER STAT.  There was a medical fellow at the ER who checked me and thought I displayed as CML.  Spent 5 miseral days in the hospital pumped up on Wayfarin and Hydroxyurea and then put of Gleevec and Hydroxyurea (and they sent me home on both drugs).  My boobs were about to burst as they were full of milk.  It took a very long time for them to get me a  breast pump.  The pain was unbearable, the BMB was nothing!  What made the scenario even worse was that every medical person who came to the room had to comment that they never, ever had seen a breast pump in an oncology ward before.  I was not allowed to see my kids.  It was one of Dante's deepest levels of Hell.  I thought I would never get to see my babies grow up.  Everyone, except this saint of a fellow, was so negative.  It is hard to forgive the horrible and unkind treatment I had at that hospital/Cancers R Us Center.  I eventually got the courage to go elsewhere thanks to the support of this board.  

[surfdaisy76]

Hi!

I am new to this...the website just about 15 minutes ago, CML about 4 months ago!  I am so happy to meet all of you!!  I really felt like I was the only person in the world who had this!  I knew that wasn't true, but it sometimes feels that way.  Seems pretty common for this lovely disease to blind-side you.  I had a routine physical in June and my blood tests were so crazy that my health care provider called me at midnight to go to urgent care and have them redone.  Turns out the tests were correct. :-(

I have been on Sprycell 100mg since the end of June.  Side effects are not too bad and my doctor is pleased with my numbers.  I read one of the comments that said the side effects can come and go.  Is that common?  I have noticed that I seem to kind of rotate between a couple of them.

Thanks for being out there all of you!

[amcantley]

Hi!

I am new to this...the website just about 15 minutes ago, CML about 4 months ago!  I am so happy to meet all of you!!  I really felt like I was the only person in the world who had this!  I knew that wasn't true, but it sometimes feels that way.  Seems pretty common for this lovely disease to blind-side you.  I had a routine physical in June and my blood tests were so crazy that my health care provider called me at midnight to go to urgent care and have them redone.  Turns out the tests were correct. :-(

I have been on Sprycell 100mg since the end of June.  Side effects are not too bad and my doctor is pleased with my numbers.  I read one of the comments that said the side effects can come and go.  Is that common?  I have noticed that I seem to kind of rotate between a couple of them.

Thanks for being out there all of you!

Welcome Surfdaisy76. It does feel good to not feel alone in this.  On a side note, I was happy that my pcp waited until 8AM to call me with the news. He told me the lab contacted him at 4AM about my results.

[Gail's]

Welcome. I know my side effects come and go. Nausea is so much better than when I first started gleevec but still rears its ugly self from time to time. Diarrhea is a constant friend, taking Imodium all the time to be able to leave my house. Anyone else using a lot of Imodium? Curious about long term effects

[Antilogical]

Was thinking about investing in Imodium stock.  I take it "regularly".  Ba-dum-dum.

[chriskuo]

One potential side effect of Sprycel that can sneak up on you is pleural effusion.  Most people don't get it but it is the most common serious side effect of Sprycel.  You can go as long as 9 months or a year when you notice you are growing increasingly short of breath.

Some people have posted here that they have had 1 to 2 liters of fluid drained from the cavity around their lungs.  This is not meant to scare you but it is better to be aware of the possibility so you can deal with it before it becomes too serious.

[Billie Murawski]

I just went for a routine blood test and the doc called me that night, everything was kind of a blur after that for a while and here I sit 8 years later thinking how the hell did I get that?  I am on Sprycel and I have been undetectable for 5 years. Welcome to our group even though you don't want to be here, but you'll get so much support and information from all these wonderful people you'll find it much easier to accept, and yes the side effects do get better.                            Billie

[Cathy]

I was at work listening to my boss talking kept getting a pain in my side it kept getting harder , told her I need to go sit down I have a muscel spasum. It wouldn't ease up. So I was doubled over at my desk when she came to check on me. I was embarrrassed so was playing it down . She made me call my doctor he told me to get in to his office asap. He thought I was having a heart attack. She wanted to call 911 I said Oh no I'll be fine. Longest ride to the doctor ever! I got there, they rushed me to er thought I was having a heart attack. I was there for hours said they wanted to admit me for observation. Wouldn't tell  me anything but everyone was acting odd. Being way too nice! LOL

 

I was mad thinking how much this was going to cost me. It took them 3 pain meds to bring the pain tolerable. Next morning kept asking me if the blood specialist had come in to see me? Didn't call them hemologist, So he came in and told me. Shock of coarse I spent 5 days in hospital. Spleen pain was super bad the whole 5 days!  now new normal DX 2010

[snowbear]

The short story is I was being treated for inflammatory arthritis by a rheumatologist for 3 years.  The last 2 years (especially the last 6 months before CML dx), I developed additional symptoms which didn't make sense considering my diagnoses and the medications I was taking at the time.  I was getting regular bloodwork and my white blood counts were always high, but docs always attributed it to "inflammation".  When my bloodwork started showing immature cells (but not blasts yet), I was referred to a Hema/Onc "just to make sure nothing else was going on".   Well, something else was certainly going on and that something was CML.  

[RayT]

Tedsey, it infuriates me whenever I read a post like yours. As a Healthcare provider for 39 years, I have no tolerance for those who don't practice healthCARE. Too many providers don't understand that all the clinical expertise in the world is nothing compared to holding a hand or hearing a kind word. I write this as I'm stuck in a recliner receiving my second blood transfusion in 2 months, wrapped in heated blankets from the wonderful nurses who've treated me like a king since I walked in the door this morning. I hope you've since found better practitioners.

[surfdaisy76]

Hi Again!

I am sooooo glad I found this place!  It is amazing to read everyone's comments and realize that I really am not the only person going through this!  I went to a support group for people with Leukemia and it was helpful, but I was the only one there with CML so it wasn't exactly what I was looking for, ya know?  Thanks to all who have shared some of your experiences with Sprycel.  So far my side effects are not  too bad with the worse really being the dry skin and weird rashes and my rosey red checks that I cover with cleverly applied makeup!

Was really feeling down about having this uninvited "guest" in my life, but am feeling more of my old fight coming back!  Thanks!I

[August1]

I was fatigued and started losing a lot of weight. I had also noticed some bruising but we were in the process of moving and I figured it was due to all of the lifting I was doing.

 

I went in to my PCP to get checked out. When they weighed me I had lost about 15 - 20 pounds. Initially the nurse complimented me as I didn't look "sick" in the classic sense. I almost let it pass, but after second thought, I stressed that I was not trying to lose weight.

 

Thankfully, the doctor decided to do a CBC. I left the office that day, a Friday, and went about my normal routine. The next day was Saturday morning and I noticed that I had a missed call from my doctor. Again, I figured that I could just get back to them on Monday but my wife had a strong "feeling" that I needed to get back to them right away. I called and they asked me to get to the ER right away. 

 

The next thing I know I was in the ER and they had confirmed the previous blood test results (WBC 220,000). When I asked the ER doctor what that meant he said it likely meant leukemia and they would be transporting me by way of ambulance to another hospital in the area. I'll never forget that moment. Total shock. In fact, I didn't even know what blood cancer really was.

 

The doctor and nurses at the ER were great, however, there was one interning doctor there who was apparently new to seeing someone actually diagnosed with leukemia. For some reason she decided to come in and actually tell me how difficult the treatment for this was, how truly "sorry" she was, and how she knew several people who had died from Leukemia. 

 

Needless to say, I got the ambulance ride out of there. On the way out I thanked the good people who had helped me and also let them know that the interning doctor needed to work on her bedside manner. 

 

I spent a week in the hospital and after blood work and bone marrow biopsy I ended up getting my official CML diagnosis on my birthday, August 1, 2012. The staff at the new hospital actually brought in a little cake that I shared with my wife and son.