Would anyone feel comfortable enough to tell me how they became to be dianosed with CML?
How it all began
Posted 05 November 2011 - 06:07 AM
Posted 05 November 2011 - 06:45 AM
My story is a bit boring and A-typical (except for high platelet issue). but I will share it with you. In January of this year after routine blood work my platelet levels were a bit high, no more than 400,000 so doctor decided it was some form of mild infection and I was rescheduled to come in for 6 month visit with retest. I went in early part of August and the office called me within 2 hours of having blood drawn, said I needed to be on aspirin ASAP, my platelets were at 800,000. Dr referred me to oncologist, in her words, "To see if we are not missing something." The same week I had appointment at local Cancer Center, after several tests it was decided I probably had Thrombocythemia (high production of platelets for no known reason) but was scheduled for bone marrow biopsy, just to be sure. The local oncologist office tried to do the bone marrow and after three attemps, sent me to Pittsburgh hemetologist, where I had a successful BMB. The following week I was told I had 97% Ph+ (Philadelphia Chromosome), and was diagnosed with CML.
I was put on Hydrea, but had no response, my white count and my platelets kept going higher, platelets dangerously high. Two weeks later I was started on Sprycel 100 mg, although it brought white count down, it did not touch platelets, they continued to rise, almost 2 million at this point. I am now on Hydrea 2000mg per day and Sprycel 140 mg per day and blood work is finally moving down. Platelets are below one million and white count is at 4,000.
I am a newbie here, my diagnosis only six weeks out, but have come to some sort of terms with the CML and have decided it is not going to rule my life. I still have those OMG I have leukemia panic attacks, I worry about the future, lumps on my neck and changes in my body, but I refuse to allow CML to take over my life.
There ya have it.
Posted 05 November 2011 - 07:58 AM
Hi, sure lots will respond!!! I had my annual BW done last November 18th, always have good report. This time my WBC was elevated, Dr. thought I may have had an infection so did another CBC & it came back with higher WBC. He sent me to hematologist/onc. She did more extensive testing, 2 weeks later with results from those test she ordered a BMB. It was confirmed January 10th this year it was CML. She sent me to Cleveland Clinic to specialist, Dr. Advani, whom I am in total trust of,! Started tasigna Feb. 1st, all BW was normal within 2 weeks of taking tasigna. Have been in CMR since 6 months of starting tasigna!!!! Keep posting & asking questions, lots of support from this board!!! Prayers, granny d
Posted 05 November 2011 - 08:49 AM
My journey started in October of 2009. I went for my yearly physical and got bloodwork done. They called me a few days later telling me that my platelets were kind of high (in the 400,000's) and wanted me to get retested in a month. I did it again in November and again they called and said it was even higher but that they would try again in another month. I remember I was getting kind of nervous at that point so I waited until Christmas Eve to go do my bloodwork because I knew it would take a couple days to get the results and I didn't want to know anything until after Christmas. My way of thinking I guess..."what I don't know won't hurt me". Anyway my platelets were in the 700,000's by then. They sent me go to a hemotologist toward the end of January, 2010, and by then my platelets were over 1.1 million. The next day he did a bone marrow biopsy. The gook inside my bones was so thick he could hardly get any out. He immediately put me on hydrea until the results came back. In February I got the results - have CML. He sent me to Roswell Park in Buffalo, NY for a second opinion. I went there and did another bone marrow biopsy. On March 1, 2010 my CML was confirmed and started Gleevec 400 on March 6th. My platelets dropped substantially every week and were normal by 5 weeks. I reach CMR in three months and have luckily been there ever since. My three month check is coming up next week and I always get nervous a couple week before. My doctor told me that if all was good he would start seeing me every four months. Hopefully it will continue to be good news!
Posted 05 November 2011 - 09:30 AM
I had some symptoms that I was blaming on working long hours and pre-menopause, not illness, and I certainly didn't suspect cancer. I had a routine physical on June 29, 2011, nearly 3 years after my previous physical. The in-house lab couldn't read my CBC, but said that the outside lab has better equipment and would be able to read it. They were nonchalant about it, so I wasn't too worried, but actually, they were more concerned than they let on. The next morning, a nurse called me and told me that another dr. in the practice wanted to see my husband and me as soon as we could get there. The dr was so uncomfortable he could hardly look at me. I think he was taking it harder than me. My wbc were 317k and they'd already made me an appt with an oncologist that afternoon. The oncologist confirmed that I have leukemia. He explained the four primary types of leukemia and said he thought I have CML because I had very few blasts in my blood, but they'd have to confirm the diagnosis with more bloodwork and a BMB. I was glad he did the biopsy immediately instead of waiting until after the holiday. I started hydrea and allopurinol the next day. My hgb was 7.1 at diagnosis and after 3 doses of hydrea, it was down to 6.5 and I started spiking fevers. So I was hospitalized for 2 days, had 2 units of blood, and then I had to take 6 weeks off from work. I started Tasigna July 12 and I am waiting for my first pcr results.
Posted 05 November 2011 - 10:01 AM
I was diagnosed in June 2009. Had horrible night sweats for a couple of years, but blamed it on peri-menopause, though it seemed a bit early (42). Got a very strange bruise on my thigh, huge, the size of my palm, and a very hard big lump in the middle of it. Didn't remember bumping anything, so I didn't know where it came from. Husband keep telling me to see the doc, but I wouldn't. Finally I was telling a work colleague about the lump/bruise and she convinced me I had a blood clot and could drop dead any moment, so I went to see the doc. He assumed it was a bruise with blood pooling under the skin, so he stuck a needle in and tried to draw the blood out, but nothing would come out. He was stumped, so suggested a blood test to see if I had an infection of some kind. Results came back with a very high white count (260,000), so he had me come in to redo the blood test. He said my blood count was high enough for something like leukemia, but he was sure it was some kind of error. I went in for another blood draw. Got a call that I needed to come in to see him, but I was in the middle of contract negotiations for the teachers in our school district, so I ignored the call. Got another call a couple of days later saying that he had made an appointment for me to see a hematologist, and he gave me the time and the address. I assumed they were just going to do more blood work.
So a few days later I hopped on the motorcycle and drove to the address. What a shock it was to drive up to the cancer center. I walked into the appointment reeling. Through the appointment, as the oncologist was telling me that I probably had leukemia I just kept thinking, "why is this guy saying this. . .I just have some kind of infection." Finally about half way thru the discussion, it finally dawned on me that the guy was serious and he really thought I had leukemia. Set up an appointment for a bone marrow biopsy on Monday (the appointment was a Friday. . .the final day of the school year).
Went home and told my husband, then had to call my family in Minnesota to cancel my flight home the next week . . that was a difficult phone call. . .had my BMB the first day of summer vacation and confirmed the cml a few days later. The memory of walking into the cancer center and seeing cancer patients in the waiting room and wondering why my doc had sent me to that place is very vivid.
Posted 05 November 2011 - 12:03 PM
Hi....I had bronchitis that wouldn't go away and went to my doctor's partner who truly listened and heard my words: I am so tired of being tired. He sent me right downstairs to the lab and ordered a blood test. He told me to call him at ten the next morning...at the hospital and they would find him for me! He said he thought I had leukemia....platelets over 1.2 million. That was Saturday morning, and he told me to call the hematologist on Monday....omgosh....ok! Our first mission was the platelets, then a bmb, then gleevec. I literally spent 11 months in bed or on the couch. I had a medical leave from school -January through June. I returned in the fall and only worked two hours a day and was back in bed until Thanksgiving. My blood did very well with the gleevec ........the fatigue was overwhelming. Five years later, I finally feel much better. I started taking four smaller pills of gleevec a day and the difference is amazing. Also, NO MORE BATHROOM ISSUES!!!!!! HOORAY! Life with cml is different, but I have accepted my new normal. Good luck to you and yours.....this board has been beyond wonderful for me. I hope it will help you. ~Lala near Chicago
Posted 05 November 2011 - 02:27 PM
My story is not all that unusual. I have my blood checked every six months due to a history of high cholesterol (which is under control now). At my regular checkup in June, my PCP noticed my WBC count was slightly elevated (11,000). He didn't seem too concerned -- my brother had unexpectedly died the week before and he attributed the spike to stress and asked me to come back in six weeks for a recheck. In early August, I went back and the WBC was now 13,000. He sent me to a hematologist/onc just to be safe. She, too, didn't seem overly concerned but ordered a slew of blood tests. When I went back for the follow-up appointment in late September, she first said the tests for anemia and rhematoid arthritis were negative and I remember thinking, of course they are, because there's nothing wrong with me. Then she said she tested for chronic myeloid leukemia and the blood marker came back postive. I was absolutely floored -- that was not at all what I expected to hear. She wanted to do a BMB that day to confirm but we were leaving the next day (Saturday) to visit our son in college so I asked if it could wait until Monday. I remember asking her what happens if the BMB comes back negative and she said that likely won't happen. I had the BMB on a Monday and she called on Thursday to tell me the CML was confirmed. By this point, my WBC was 19,000 and platelets at 612,000. I went on 100 mg of Sprycel and within 2 1/2 weeks my WBC dropped to 3,900 and platelets to 200,000. I'll have my first PCR in December. The only sypmtoms I was experience were fatigue and night sweats, which like so many others, I attributed to menopause and life as a working mother of three. I had a CT scan shortly after diagnosis that showed a normal spleen. I feel indebted to my PCP for noticing the rise in WBC and referring me to an onc so quickly before the CML could do any real damage. I'm also grateful for all the doctors and researchers who've developed the current treatment, as well as this discussion board, which has been a true lifeline.
Posted 05 November 2011 - 04:09 PM
Was able to get in a couple weeks early for my yearly physical because I had just developed a bulge under my ribcage and it was a little tender. I thought I had a hernia because a friend of mine, who just had a baby, got one as a result of delivery. Since I had had a baby a little earlier, I thought it was the same thing. I remember being in a long line at the Dr's office because the avian flu was going around. I was thinking I couldn't wait to get this over with and get home to my kids. I had always been so healthy and my doctor and I were strong believers in preventative medicine, exercise, eating right, yada, yada. She told me I was one of her best patients.
About four hours later, I got a call to go to the ER STAT! My internist told me she prayed it was a lab error. It appears my WBC count was 180,000 and my PLT were about 600,000. It was shocking because I didn't feel sick. I had just made dinner and cleaned the kitchen. But having studied physiology, I knew exactly what it meant.
As we were waiting for my husband's sister to come over, I sat on the floor in the front hallway and took my kids to my breast for the last time, (I was nursing a baby and little toddler then). And I remember they weren't interested because they were so excited that their aunt was coming over to watch them. When she arrived, I set off into the unknown, which turned out to be such a dreary and depressing place. Siddhartha Mukherjee, in his book, "The Emperor of all Maladies", called it being whisked away to "Cancerworld"---so hauntingly accurate).
I was in the oncology ward for 5 days, and officially dx on Thanksgiving 2009. I remember being so lonely for my kids and husband (the onc floor was quarantined because of the avian flu). And I was so uncomfortable on a bed made to prevent bedsores in immobile ICU patients. The nurses begged me to take sleeping pills because I had not slept a wink in days. I couldn't understand why someone would purchase these beds for cancer patients, maybe it said something more... There was not much hope in the place. It was dark. The air depressing. It was so surreal. It was like I was suddenly locked away in nightmarish dungeon, immediately becoming an untouchable. The bed was hard as wood and the whooshing sound of the air machine in the mattress was deafening and unrelenting. I slept on the plastic pull-out sofa in the room, which was set up backwards.
The worst part of the experience, was having to stop breastfeeding cold turkey. My breasts were bursting and leaking milk. I was in such pain. They finally got me a breast pump after a couple days of asking. And every doctor, nurse, resident, and med student, would joke that they had never seen a breast pump "on this floor before" (like I would find it hilarious too). Actually, one onc, who I remember was from China and kind, told me that she knows of patients that could still have babies after dx. Nevertheless, their comments stabbed like the sharpest knife twisting in my heart.
Ironically, I had my babies on the maternity floor below. It was a women's hospital and I was surprised to find out that the top floor was reserved for co-ed oncology. I then remembered the haunting words of a maternity nurse, just months before, telling me that the people on the floor above were very, very sick. I didn't really know what she meant. I assumed it was the neonatal ICU. It appears what she said to me was an omen.
It turned out my testing was sloppily done, probably because everyone was off for the holiday, (they used the lab and pathologist at the Children's hospital across town). I never got a reliable PCR number at dx, (and didn't get one until I changed oncs six months later). But it was enough to confirm CML. They found evidence of the fusion protein.
So, it is always bittersweet when Thanksgiving comes around each year. It was my favorite holiday. Now it is Halloween.
Posted 05 November 2011 - 08:05 PM
Thanks for all the info and stories everyone. Has anyone ever had elevated B12 levels? Last tested mine were 1200 and i go back in next monday for a CBC
Posted 06 November 2011 - 09:43 AM
Tedsey, my heart goes out to you. Reading your story hit me very hard, couldn't hold back the tears. The Lord has blessed you with 2 beautiful babies & then hit with this nightmare. I know your are a kind , wonderful person just by reading your posts & you are an inspiration to me. You will tell this story to your grankids one day & they will know what a strong determined person they have as a " grandma" !!! Keeping you in my prayers, granny d
Posted 06 November 2011 - 11:01 AM
HIgh levels of B12 (folic acid) are generally not a problem, and yours is just a bit higher than "normal". Actually, there is no such thing as "normal" levels of B12 since it is not toxic in higher levels. It may just show that you ate something with high levels or took a vitamin that kicked in at the time of the test.
Posted 06 November 2011 - 12:37 PM
Normal b12 range is 200-900. And yes you are right its not toxic in high levels but it can be a sin of a problem with the liver and spleen. High b12 levels can be caused b liver disease or leukemia. And I hadn't eaten before my test at all and i dont take any vitamins.
Posted 06 November 2011 - 04:33 PM
Went in for my regular biweekly allergy shot (in arms). Ended up with a huge hematoma - I could feel it continue to bleed and swell with blood. Really hurt. Called my doctor a few days later, decided this was just too weird to let pass by.
Went to the primary. He wasn't sure what to think, but noted I had been taking alot of ibuprofen, so thought it might be just that. I kept on it, though, and he finally said we'll do a CBC. He told me he'd call with results on Wed. Instead, he called me Tues morning, said he got a call from the lab that the WBC was too high (43K). He said a local hematologist would call me to set up an appt. (In reality, I learned later my results were alarming enough that the lab called the hematologist, who called my primary out of the blue about it. They kept that from me until I could get in to see the hematologist.)
Went to the local hematologist who told me it looked like I had APML and, in his words, it could kill me in a matter of days if we didn't act fast. My blood smear had alot of promyelocytes in it (a hallmark of APML), and I had popped up with a couple of more strange bruises, which is what got everyone so excited, because it looked like I might be entering into differential intravascular coagulation (DIC), which is what kills a lot of people with APML. He said it was serious enough I had to go into a hospital in Boston, because the treatment needs to be very carefully monitored.
So into Boston I go, picking up my husband along the way. (Wonderful friends of ours watched the kids, thankfully.) By the time I got down to the hospital, I had a new bruise on the back of my leg. I knew it had to be serious, because I caught the doctor's nurse practioner blinking away tears in her eyes. (Never a good sign.) APML is very treatable, but once you hit DIC, it is apparently very dicey.
They began testing me for APML, didn't find exactly what they were looking for, so thought perhaps a variant of APML, which would be much less treatable. Finally, onc ordered a test to look for t(9,22) and here I am today with CML instead.
They still can't really tell me why I presented with such high numbers of promyelocytes, or why I was bruising so much. I was told the bruising might be due to the ibuprofen and to stay off it for awhile. Also, I had a cortisone shot in my neck a few weeks before the diagnosis, and cortisone can trigger a left shift in the blood. (It must stimulate a bunch of new blood cells to start growing.) But it's unusual to find a lot of circulating promyelocytes. THey should have been in the bone marrow. My blasts were only 0.2% in the BMB, so that was good.
My WBC came back down to normal in just one week on Gleevec, and has been fine since then. Waiting to get my PCR results at 6 months next week.
Posted 07 November 2011 - 04:01 PM
I was diagnosed after a physical. I was not sick and had no clue there was something wrong with me. I have not had elevated B12, just the opposite, mine's low and I'm taking a B12 pill every day. Also taking iron.
Posted 07 November 2011 - 04:11 PM
Was in perfect health, went for my annual physical, doctor called a couple of days later and said WBC was elevated (35K) come back in to repeat the test. Next test came back higher (60K), went to hematologist that day - he said it was most likely CML, pending results of BMB and FISH/PCR. Wound up being chronic phase CML and started Gleevec in July 2010.
Posted 07 November 2011 - 07:59 PM
Hi - I was like Lucky...labwork came back after a physical. I had borderline WBC in February (along with high cholestrol). Told to go back after my cold disappeared. Ended up going on weight watchers - lost lots of weight and went back for the cholestrol in October (because I forogt about the WBC)...WBC ended up being higher than it was in February (only 18K)...but the cholestrol was GREAT! Primary referred me FRANTICALLY to the hematologist who said no need to panic. Sent me for a PCR - went in 2 weeks for the results and was shocked to get the diagnosis (WBC was up to 28K). Started tasigna October 2010.
Posted 08 November 2011 - 10:21 PM
My coworkers teased me that I needed to be an episode on the television show, "House". I was taken by ambulance to the ER and admitted because of extremely high blood pressure. X-rays led to the discovery of something wrong with the bottom of my left lung. WBC was high and out of range. Two weeks later and after multiple trips to hematologists and pulmonologists, CML was confirmed. My lung was partially collapsed due to my enlarged spleen. I take 400 mg Gleevec -- four 100 mg tabs. 11/22/11 will be my first cancerversary. I am 49, practice law full time and have a 9 year old son. I have achieved MMR and am waiting for the results of last week's bmb.
Posted 09 November 2011 - 02:36 PM
I was at work one day and passed out after walking up the stairs. I was rushed to the hospital in the ambulance with the Paramedics treating me like I was a lying drug addict (No one passes out for no reason - what are you on?????? Don't lie - we know you took something!). When they ran the initial bloodwork it came back with high WBC (36) and they immediately said I had an infection somewhere. I insisted I felt fine (except for my face which hit the concrete floor) and was not experiencing anything that seemed like an infection. They kept me over night and had the hematologist come in to see me in the morning. When the hematologist came in, he introduced himself and said he thought I had CML and they were going to do a lot of bloodwork to verify. Since my HGB was also low they did some tests to look for internal bleeding and kept me for a few days. After seeing the hematologist the second day (actually the partner of the one I had seen the day before) I did not have a good feeling about their practice so I asked for a second opinion. When the new Oncologist/Hematologist came to see me I felt much better about him and am still seeing him. On the fourth day, the Oncologist came in and told me the bloodwork showed PH+, he did a BMB, and sent me on my way. I started on G400 about a week or so later. That was early April 2010.
Looking back, there were signs for at least a year before my "episode." I had some stomach pain and the doc sent me for some tests. My WBC was high (18) but when I had a colonoscopy they removed some large polyps and I developed a bleed. I spent a few days in the hospital and they said my bloodwork showed the WBC was still high but was coming down. When I followed up with my PCP a week or so later, I asked if I should see a Hematologist and was told that she felt the WBC would be down to normal levels soon since I really did not feel sick and showed no other signs of infections. I also asked her about the horrible night sweats I was experiencing and she said it was probably peri-menopause. I am the kind of person that would rather not know if something is horribly wrong and tend to trust the doctors. Needless to say, looking back, that was not a smart choice on my part.
Posted 10 November 2011 - 06:29 PM
that peri-menapause explanatinon? i really hate that. i hate that so many things get blamed on it. if i had not been told many things were PM i would have gone to a doc a year ago.
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