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how/when did you get your diagnosis?

cbc primary care provider denial life doesnt stop

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#1 Terran

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Posted 26 June 2015 - 10:10 PM

You all have probably already done this, but I'd really like to hear your diagnosis stories. I was struggling for months with what turned out to be Reynauld's syndrome in my left hand, when my orthopedist ordered miscellaneous blood tests. A month later I saw him again and he reviewed the results, mid December 2014. Count down to Christmas while simultaneously wrangling a follow-up test from my pcp. Referred to a hematology oncologist and took the appt for the day after Christmas. The doctor calls me at work, several hours before my appt and asks me to come in early. Okay, maybe he wants to start his weekend early, it's Friday. But with a weird tone in his voice, he asks how I'm feeling, like being at work is unusual. Now I'm so freaked out I leave work to wait for my appt at home and invite my husband to come with. Good thing because the doctor is trying to decide whether or not to put me in the hospital right then. So I negotiate because the 26th is my third daughter's 10th birthday. If we move her birthday dinner up a day, I can go in the hospital tomorrow. So husband called everyone while I was getting my bmb and arranged dinner at the local Italian place. I was full of red wine before the IV relaxation juice wrote off. The following day the doctor decided I didn't need hospitalization.

#2 JPD

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Posted 26 June 2015 - 10:25 PM

October 2014.

 

Had a swollen spleen to the point I could feel it - went to the clinic on a Saturday, four hours later was talking to an Onc.

 

I had started having night sweats about a year prior, but I just assumed that was stress related; as I had just seperated from my wife.  Looking back, I think I knew something was up but didnt want to face it. 


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#3 Terran

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Posted 26 June 2015 - 11:23 PM

JPD, no wonder you're pessimistic. Life has really slapped you around. I had at least googled enough to know leukaemia wasn't terminal anymore. And my powers of denial are extraordinary.

#4 dede5

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Posted 27 June 2015 - 12:37 AM

For about a year before dx, I had 4 episodes pretty evenly spaced, where I would wake up barely able to move. I would spend 3-4 days flat on my back, then it would pass and I would go on about my business. From December to February at the end of that year, the episodes became more frequent and closer together. I also lost about 50 lbs in those 2 months. Couldn't eat due to the dragging feeling I later learned was my swollen spleen. Although I worked in healthcare for most of my life, I avoided it like the plague on a personal level. One night in February, I went to work and was sent home almost immediately, due to the obvious condition I was in. After I left work, I had to pull over and just sit while waves of nausea and weakness washed over me. Don't remember how long I sat there, but that was the moment I knew it was time to seek help. My pcp is a retired hem/onc, so he knew just by looking at me, and ordered the tests to confirm. When his nurse called to tell me he wanted to see me in person, I knew I had a real problem. I was dx March 1, 2011. Later found I was in accelerated phase, nearing blast crisis. Four years later, on Sprycel 100, I'm still here to tell the tale. So thankful for that!


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#5 Anti-Matter

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Posted 27 June 2015 - 09:47 AM

Hi. I've been lurking and this looks like the time to jump in and say hi.


I was diagnosed with CML in January.

 

I went to the local ER with flank pain. I had a kidney stone. I've had 'em before and know the drill. The ER was packed with flu patients and the wait looked ridiculously long, so I left. Why wait and get the flu, right?

 

After a sleepless weekend, I returned to the ER, figuring the little #$&!@ wasn't going to pass on it's own. My WBC made the ER doctor loose his freakin' mind and declare, "You have leukemia and need aggressive chemo right away!" before shipping me off via ambulance to the university hospital.  At least they didn't use the helicopter. I stayed for 5 luxurious days in a room on the bone marrow transplant ward.

 

To say I was thunderstruck is an understatement.  Mortal terror is more accurate. There were no symptoms.

 

Luckily for me, and I'm still processing just how lucky, the cooler, expert heads at the university prevailed. They knew what they were looking at almost from the start.  After scans, tests, blood work (I asked them to put a faucet in and be done with it) and a bone marrow biopsy, I was officially diagnosed and given Tasigna.

 

I see the doctor again in two weeks. It's been 7 weeks since my last appointment. As of my last visit, I reached the MMR milestone.

 

The kidney stone? It passed without further difficulty the first night of my hospitalization. I figure it's was job done. It got me where I needed go and moved on. I like to think it's still out there somewhere walking the earth, doing good deeds.



#6 Dona_B

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Posted 27 June 2015 - 02:14 PM

My health started going down In August of 2012 when I had pneumonia and suddenly lost several pounds. There were many health issues from then to diagnosis in January 2014 but it was the MRI that I insisted upon that captured the change in bone marrow and quickly led to the correct diagnosis.


DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17


#7 Leuk and Duke

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Posted 27 June 2015 - 03:12 PM

I had abdominal pain and a feeling of fullness that wouldn't go away. Went to see GP after a week of that and blood work showed a need to see oncologist. Looking back, I was experiencing night sweats and fatigue regularly but I attributed those to being overweight. It's been two months and my journey is just starting.

#8 Terran

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Posted 27 June 2015 - 04:52 PM

Dede, I don't know why we have to have CML but I thank Jesus your pcp was a retired hem/onc.  And Anti-Matter, LOL about the kidney stone wandering the earth doing good deeds.  I'm sure it at least eneded up in some previously calcium deficient soil.

 

Dona B, Needing an MRI for diagnosis; that's crazy.  I would've been pissed.  Good for you.

 

Leuk and Duke, I thought my night sweats were related to time of life and the extreme fatigue was just because life is hard.

 

I still think life is crazy.  CML...who'd a thunk?



#9 rcase13

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Posted 27 June 2015 - 05:49 PM

Wow Anti-Matter I had an almost exact experience. I didn't have the kidney stone but my experience was the same.

I was told in the ER that I had aggressive Leukemia and didn't have long to live. I was told to prepare for the worst. I would probably only have a couple months.

Needless to say it was the worst night of my life. I was also sent by ambulance to the transplant ward. The next day I was told I would live a full life. That something besides CML would kill me. Then I met Trey, Scuba, and everyone else on this forum.

Kind of wish I got that helicopter ride now... I did get some morphine. That was nice.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#10 Floa7

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Posted 27 June 2015 - 07:59 PM

My son was diagnosed with CML in Nov 2011, annual insurance check-up from work, his wbc was high.

I checked out CML on the pc, was probably already reading from this forum. I went to the pcp 3 times complaining of night sweats, losing weight, sleeping 20 hours a day, one visit to him I had been up all night complaining of my right leg pain, I couldn't stand, sit or lay down, he gave me hydrocortizone pills....lol I told the doc I couldn't get over the flu. the third visit he said to come back in three days for blood work if I didn't feel better.

I went back in three days Jan 27 2012 and that evening the nurse called me to go to ER and get admitted to Hospital. The ER doc told me my wbc and platelets were high and I told him I had CML... I got admitted that night and they called in the onc

 

Yes we both have CML


1 2012 CML detected Started Gleevec 400 mg

In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto

2 2015 Tasigna 600 mg/day

I have been PCRU for 2 years and stopped Tasigna 4 7 2017

5 8 2017 results 0.008

5 30 2017 results 0.028 

6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1 

 

My son

11 2011 CML detected Started Gleevec 400 mg

He went 2 1/2 years on gleevec and lost PCRU

Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0

He went back onto Sprycel and now is PCRU again

3 16 2017 results 0.008

6 1 2017 results 0.002


#11 Anti-Matter

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Posted 27 June 2015 - 09:31 PM

rcase13, I'm still pretty annoyed at the first ER doctor. They way I see it, his bedside manner, tact and diplomacy skills either lack or don't exist. He didn't actually know what was going on, and should not have speculated. Ultimately, they sent me to the right place, after offering me a Xanax (I declined). There is that. In all fairness when the dust settled and I saw my primary care doc, he admitted my WBC would have panicked him, too.

 

Floa7, I've been doing family history research for a number of years and been collecting and scanning all kinds of documents. It's common knowledge that my great grandmother died of leukemia. It crossed my mind, um, a few times during my hospital stay. As soon as I got home and worked up the nerve, I checked my records. It was right there. She died in 1935, age 48, of CML. My doctor tells me that's impossible, CML didn't exist as a diagnosis in the 30s. Someone must have filled that in much later. All I know is what the document says and that there's a world of difference between 1930s and 2015 medicine, thankfully.



#12 Gail's

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Posted 28 June 2015 - 02:53 AM

I was tired, lost about 15 pounds in about 6 months, and had night sweats. Didn't worry, thought it was normal aging and hormones. Had an intestinal infection and pcp dr ordered routine labs since I hadn't been in for a while. At work the afternoon of the blood draw, I got a call from a medical assistant at oncology saying I needed an appt. I said, I think you have the wrong patient and had him repeat the health record number to me. I asked what kind of referral did I have, made him check my chart, and after lots of ummms and errrrs he said it was for abnormal lab test results. I said I'd call back. Got up from my desk and asked the doc in an adjacent office to look up my test results to explain why onc called me. So I got the news from a friend who is an OB/Gyn doc! Lots of back pedaling and apologizing on the part of my PCP's office over the next several days.

On gleevec 400 mg since February 6. The side effects make me hate this treatment but it's really a love/hate relationship since it will keep me alive.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#13 Dom

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Posted 28 June 2015 - 06:31 PM

I have a strange story. I was having a stent operation, my third, that resulted in 2 additional stents, giving me 4 in all. I'm still more concerned about heart, BP, cholesterol, than I am about leukemia. In my family, the men -- my father, his brothers, my brother, my mother's brothers -- all die before 65, and most before 60 (like my father who died at 58) and I'm 63! I had no symptoms of CML.

Anyway, while lying on the gurney, a doctor came in and whispered something to the surgeon. The surgeon said to me "your white blood cell count is high, must be leukemia, we'll get you in touch with a hematologist". I was on happy juice at the time, and it really meant nothing to me.

After I spent the night at the hospital, I would occasionally wake up and think, "I have cancer!" But it didn't quite sink in. I thought it was all a mistake. Then, in the morning, about five doctors walked in and stood around my bed. One was the man who later became my oncologist. They explained CML, said I had it, told me what the end was like before 2001 (don't ask, it isn't nice), then told me I would need to take a pill each day, and added "you'll die of something else". And that was it.

I never really had any symptoms, but after that first visit from the oncologist I had a few nights of severe night sweats. And I believe a number of doctors have pointed out that I was unusually sensitive when my stomach was touched. But that's all. On gleevec 400 since then (February 2014) and sometimes it seems the side effects of the cure are worse than anything I experienced from disease. But I know that's not true, really.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#14 alexamay09

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Posted 29 June 2015 - 09:31 AM

I was 3 years out from a breast cancer diagnosis, had gotten fit, managed to lose weight and was jogging regularly when my fitness fell, I was getting out of breath, I could hear my blood swooshing in my head on exertion and had swelling in upper abdomen.  I put off going to the doctor and was scared it was secondary breast cancer I had.  I couldn't jog uphill anymore and was getting really breathless so went to my doc, they took blood, called me up a few hours later and asked me to go to the haematologist the next day. I asked "Is it leukemia?" and the doc said yes but that they thought it was a treatable form.  I was told it was likely accelerated phase and typed for transplant.  I am coming up for 3 years at the end of August and my last bcr-abl was 0.09.

 

Alex



#15 Antilogical

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Posted 29 June 2015 - 06:18 PM

In preparation for a knee replacement, I had some pre-surgery blood tests done, mid-2011.  My PCP was shocked to see that I was severely anemic. My previous blood test - 6 months prior (my PCP is very thorough) - did not show this.  I spent the next 6 months undergoing a variety of probes and other testing, all of which proved negative.  BTW - at this point, (with the exception of my knee), I felt better than ever.  Suddenly, the anemia disappeared and my white cells spiked.  The nurse called me with the lab results while I was traveling for work, said she was scheduling an appointment with a hematologist, and wished me good luck.  I looked up the doc's name as I sat in a conference room, and saw the word "oncologist", the address being "Hillman Cancer Center".  Uh-oh.

 

I started Gleevec in March, 2015.  Eventually had the knee replacement, and my hem/onc reduced the dose to 300mg. Good results.  Latest test was NON-QUANTIFIABLE at <.007 IS.  Pretty annoying side effects.  I'm now wrestling with severe iron deficiency.  Had a few iron infusions, and a GI doc ruled out anything serious going on in the gut, with the exception of shart-related activity.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#16 mlk210

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Posted 30 June 2015 - 10:43 AM

In December 2013, I went in for my yearly physical per insurance guidelines. My doctor called me on Christmas Eve and said my white blood cell was a little elevated and to come back in a month. The nurse suggested maybe I was fighting a cold (which I was at the time). Thought nothing of it and never went back to have the second blood draw. Just figured since I felt completely normal it must have just been the cold. (Ignorance on my part). Six months later in June 2014, the doctor's office calls me again because I never went back to have the test run and it came back to them from the lab. So, i tell them I'll go. I wait another week because "I had a busy life and no time to take a five minute time out and get a simple blood draw."

 

Finally July 2, 2014, I go to the lab and get my blood draw. I proceed to go to the petting zoo with my kids and my husband. Normal day and I feel fine. Around 4pm that day, my doctor calls and she apologizes because she's shopping with her daughter (due to crying child in background). Terror struck and I knew something was wrong. She instructed me to go to the ER because she wanted another test done on my white blood cells just to make sure the one her lab took was accurate. The urgency in her voice wasn't hard to miss. I packed up my kids and my husband drove us.

 

The ER doctor came in after a while and confirmed the count was correct. 106k white blood cells. He said he secured an appointment with a hemo/onc for the next day at 12:30. At this point, I'd already been googling high WBC count and figured out for myself I had leukemia, but which kind I was unsure. All the ER doctor told me was I had a blood cancer of some form, but that's all he could tell me. It's amazing how the internet still has all that outdated information on CML.

 

After a sleepless and crying night, I was told the next afternoon I most likely had CML and it was a treatable cancer. 


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#17 kat73

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Posted 30 June 2015 - 10:45 AM

My CML was found on a routine annual physical with an ordinary CBC.  Completely random and serendipitous. I felt fine.  This was my first visit with my new pcp.  My old one, that I'd had for 20 years, had retired a few years before. In between I'd sort of limped along, not really having physicals per se, seeing various specialists for other stuff.  The only clue, looking back at old CBC's from that period, were some LOW WBC's, which I've been told can be the body's attempt to lower some renegade whites that are agitating to explode.  My new pcp's manner of telling me was a little better than some of the above horror stories - she called (herself) the next day and told me my WBC was very high and that I needed to make an immediate appointment with the hem/onc whose name and number she gave me.  I was reeling, and said, "I know what a high WBC means - leukemia!" and she replied, "Let's see what Dr. B says; make the appointment right away."  I think I pressed her to tell me what she thought - I was desperate to not have all those hours ahead of me to worry - and she grudgingly said, "I think you're probably going to be all right," or something like that.  Fortunately, I had a regularly scheduled cardiology visit the next day and this guy is something else.  He always makes me feel great.  He said, "Yeah, I've seen your stuff - looks good actually - I've got lots of patients who've been living with leukemic issues for decades - don't worry - Dr.B is great, I did my rotation with him, you'll love him."  My husband and I went together to see the hem/onc and he gave a straightforward and understandable accounting of what CML is and that we now had plenty of options going far into the future, medication-wise, and that he would start me on Gleevec, which "most people tolerate very well."  Never had a good day again from the moment I took the first pill, until I switched to Sprycel two years later.  But that's another story!


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#18 tinman1939

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Posted 30 June 2015 - 11:05 AM

The day after Thanksgiving, 2006, I went to the hospital with side pains, thinking I might have a hernia (had lifted some wood from a car trunk the day prior, when I first felt the pain).

 

While waiting in a small room in the emergency section of the hospital, I had some bloodwork done. After about 45 minutes, and while sitting on a gurney, dangling my feet, a doctor came into the room. He stood on the other side of the room, and started talking about why I was feeling that pain. He said I had thousands and thousands of white blood cells in my spleen......and he said that I have leukemia.

 

The doctor continued to talk, but my mind was still processing what he had just said. Within a minute, I fell face first off of the gurney onto the hard floor of the room I was in. The next thing I know, I was being lifted up by a couple of orderlies. I knew immediately I had wet myself, and I felt some teeth in my mouth that were knocked loose. I also had blood streaming down my head where I had hit it on the floor, and my nose felt like it was broken. After stabilizing me, I was transported to another hospital.

 

Instead of focusing on my leukemia those first few days at the other hospital, where my WBC count was lowered to a more stable level, I had to deal with the trauma that was inflicted upon me upon hearing the news of my illness.

 

To this day, I don't know why that doctor didn't give me that terrible diagnosis while standing next to me, perhaps even holding my hand or steadying me on the gurney. Or, he could have brought in a nurse or orderly to stand by my side. Or, he could have brought in my wife, who was outside in the waiting room. He could have done any number of things to change that outcome.

 

Instead, he delivered that news all the way across the room. So indifferent....so uncaring....so unprofessional. Long story short: I reached out to the hospital, saying they should change the way they deliver such information to patients. The hospital videotaped my recollection of that terrible day and now show the video to new emergency room personnel as a case study in how not to treat a patient receiving news of a chronic illness.

 

If I was litigious, I might have sued the hospital. But, my reaction then - and now - is to instead try to change the way hospitals deliver bad news.



#19 Terran

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Posted 02 July 2015 - 04:35 PM

I can't thank everyone enough for sharing with me. The stories are so similar. I feel a lot less alone, or weird. I read some out loud to my family in the car. I'm sure it helped my youngest. If you all are okay, then I'll be okay too.

#20 afd363

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Posted 02 July 2015 - 08:13 PM

Although I dont have CML I thought I would share my story. I had a normal routine yearly physical by my employer in Feb of this year. The doctor was familiar with me since I see him every year and he gets a phone call from the lab about my high platelets. He called a few days after my exam to ask me if I knew my platelets have dropped. I said no and he said that I have a large number of immature cells in my blood and told me that he thinks its leukemia. I was in the living room with my wife, my four year old son and my three month old son. I knew that I had an increased risk for leukemia. I fought back tears and slight panic to listen to the rest of the phone call. He told me to see my hematologist that day. It was 430pm on a monday. I got off the phone and my wife asked me what was wrong (We've been together since we were 15, she know something was up within 15 secs of me answering) I tried calling but could not be seen that day, nor would the receptionist give me an appointment for the next day. I was scheduled to go on a trip to FL at 8am the next day. I had to decide to go or not, I decided to go to FL anyway, if it were that important I could find a doctor there.
Looking back a phone call is a crappy way of doing business. I spoke to my hematolgist after I land in FL, he said he didnt think it was AML and I could wait for more tests after I got back. I had more tests done and a BMB. I was told that I had myelofibrosis and I could need a BMT. I thought it was great news, its not leukemia and people get tansplants everyday right? No big deal. I went home and started the google machine. I found out myelofibrosis is a form of chronic leukemia, and the BMT process sucks! Not to mention that whole statistics. I'm fine for now and waiting for some levels to drop further then will be getting a haplo at Hopkins.





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