WBC level at diagnoses

Mine was 17.5 k/uL.

94000

Not sure if it’s exactly the same thing, but my ”LPK” was 320x10E9/L.

Didn’t feel sick, just a bit pain below ribs to the left, if caughing, etc. That’s why I visited the doctor.

My white cell count was 17.... however, my spleen was greatly enlarged. Years later from my diagnosis - Jan 1999 - I asked why the white count was so low as my disease was considered to be progressing. The answer was that for some reason my spleen was the reservoir of the majority of leukaemic cells.

Sandy

Very interesting Nimbus. Love the little comments after the levels:)

My husband’s was at 200,000. The on call doctor called in a panic with his results and said go to the hospital immediately if you feel unwell. I spent the weekend googling WBC 200,000 looking for a reason that wasn’t leukemia related :( So actually it was almost a hrelief when the doctor told us on the Monday he suspected CML rather than any other leukemia type.  He also had an extended spleen. 

I too had been Googling prior to diagnosis. The doctor asked me what was my diagnosis and told her, "correct" she said, "now how am I going to treat you?" And I explained.   

Hi Nimbus, I had actually diagnosed myself as well. Didn’t want to believe it but in my heart I knew. We have to be so educated on this and follow through with what we know!! Be well, Dawn

-33,000 on a routine blood test.   -50,000 by the time I started Sprycel a month later.  

Emergency room visit, “Kidney Stones”, WBC 114K
Advised to see Oncologist.
I ignored advice. 3-months later , emergency room visit,
More kidney stones, WBC, 163K.

I then realized that this was real. I had no symptoms,
no previous health issues and no regular doctor even though
I have insurance all over the place.

100mg Sprycel, six weeks later WBC, 7.5K

Note,

I believe that my ‘Kidney Stones’ were my kidneys cleaning
house because of the oversupply of white blood cells.
Everybody has kidney stones, and your kidneys dissolve them.
Normal kidney function dissolve the mineral stones before
these clumps move on. And cause great pain!

Romo

DX In Oct 2017 WBC count was 270

Thanks for asking, my cml has been stubborn. Pcr at dx found the major break point p210 b3a2 , b2a2 and also the minor break point p190 e1a2 fusion transcripts.I have been on tasigna since dx had a complete hematologic response within 3 weeks.That is the only milestone I have met, my last bcr abl fish test last month came back at 57% ,Im awaiting results from the latest fish test which should be in tuesday.

Hi everyone

This is a great question - I have always wondered how "sick" I was compared to others at diagnosis and I'm grateful to read all your answers.

For the record, my WBC was 203 000 on the first test with my GP and 24 hours later had jumped to 281 000, after I got an emergency appointment with the haematologist and was admitted to hospital. My spleen measured 11cm below the intercostal margin. I was put onto hydroxyurea first while waiting for confirmation of whether it was CML or CMML, and stayed on it while awaiting authorisation for dasatinib.

10 days after starting dasatinib, my WBC dropped to 33. It's really unbelievable how well these drugs work. Incidentally, my PCR test found BCR-Abl of 76% at diagnosis.

From reading everything here, one thing is clear: we are all so different with different counts at diagnosis and vastly different response levels! But luckily the drugs seem to work for the majority of us.

Best wishes from South Africa

Martin

That’s incredible! How did you survive?
You have to tell us your story.
From start until now.
What was your first treatment?
What was the progression of treatments?
Side Effects?
PCR numbers along the way..

Sorry for the intrusion on privacy.

Stay with your comfort zone..

Romo

Hi Romo, yes my white count was 440,000 on diagnosis and it is 24 years since that diagnosis. I know that for some newly diagnosed CML’ers, just the knowledge that these kind of numbers happen and will continue to happen more frequently now, gives a little reassurance. Much has changed since the days that me and others were first diagnosed. We still have to remember though, that CML is still a very serious illness, but the outlook is much brighter now for many.

so... the first signs that something wasn’t quite right came in 1994. I started swelling up above my socks, around my legs. The guys at work commented on it, but for some reason I just kind of ignored it. Then I felt a lump in one side of my stomach and again thought nothing about it. I was 45 at that time and had never been ill in my life, maybe I just believed that serious illness was for others? I don’t know. Anyway, A bit later the boood dining service came into work and I went to give blood. The prick in the finger which was meant to drop in the fluid, actually floated ( may have been the other way round). Lady said I was probably anaemia and sent me away. Day after, I got call at work to say I needed to go to GP immediately. Went to see him and he told me I had CML and sent me to Manchester Royal Infirmary the day after. 

At MRI they did a collection of stem cells via a centrifuge machine that spun the blood in order to separate it into its different layers. Then my consultant said that without treatment I would have 2 or 3 years to live. The only treatment at that time was interferon - and they didn’t really know how much longer that would give me if any. BUT, there was a trial going on at MRI which I could participate in. So  I then went into isolation for 3 weeks while they killed off my bone marrow with Hydroxyurea ( I was the 1st person ever to use this. Prior to that everyone had a very invasive chemotherapy to kill off the bone marrow). The idea was that they then gave me a growth factor which stimulated the bone marrow and the stem cells would regrow, but during a short window of opportunity those stem cells would contain some new, Leukaemia free, stem cells. They would then hope that the interferon would be more able to clean up the Leukaemia. So that collection happened, shortly after that I went back into isolation for another 4 weeks where they gave me a very potent chemotherapy and then gave me back those cleaner stem cells. 7 weeks in all, in a small sideward on my own, with two visitors a day maximum, masked up. Then after recovery from that procedure, I went onto interferon which involved three self injections a week.  The 1st blood test after that procedure showed that it hadn’t worked. The Philadelphia+ chromosomes we’re back to 100%. After all that, that news was quite shattering. They don’t do that procedure any more.

so, I stayed on the Interferon with nothing else on the horizon. Bear in mind the amount of time the doctor had given and the fact that Interferon was also known to have quite severe depressive side effects and you can imagine how difficult a time it was for me - but more importantly for my wife and 2 teenage kids. It’s harder for them than it is for the patient. This next bit is the key bit..... somehow, I stayed in chronic phase for 8 years. Goodness knows how or why. Many, many people weren’t that lucky. That 8 years saved my life to be honest. 

Then, one day I saw an article on local TV that mentioned a new drug that was on trials in America and showing promise for Leukaemia. It didn’t say which Leukaemia. Imagine my feelings when it became clear that it was for CML. The drug was STI751. Next, it came into trials in the U.K. It was available originally at Newcastle under Prof O’ Brien (I think). It wasn’t available at Manchester. I started contacting Doctors all over the world - Los Angeles, somewhere else in America and I also contacted Dr O’Brien at Newcastle. Everyone said it could be very beneficial for me. Thus I went to ask my GP if he would refer me to Newcastle because I had seen these developments on TV and on the internet. He refused to do so, telling me that I should stay as I was and not take any risks. He asked me what I would do if I was given a placebo ( no one was given a placebo)? He told me he was sick of people self diagnosing via the internet. I told him that even though I was still in chronic phase, it wouldn’t stay that way. That doctors appointment was a learning curve for me and for him. He’s still my GP and a damned good one. I hold no ill feelings at all.

The thing I learned from that, was that sometimes you have to push yourself for things within the NHS. Eventually, with a bit of determination, I got my place on the trials. My wife was worried because to get onto the trial I had to come off the Interferon, which meant that the Leukaemia (ph+ chromosome) came back to 100%. The story from there is the same story that many people have. STI 571 became Glivec. It has been a huge success story. New patients now go straight onto these drugs and (remembering that some people still have their struggles and difficulties) they have opened up a whole different world from what it used to be.

I hope this has been interesting and I really hope that the fact that many people are now living many years with CML (I’m not in complete molecular remission - and never have been) gives them a bit of hope and confidence. I was 45 when I was diagnosed, I turn 70 next Jan. I will never complain of getting old.  Glivec means I don’t read on here as often as I used to, so don’t know much about your personal position, but again, I hope it helps.

Great story and just goes to show how much these new drugs can extend our lives.  Still hoping that the cure is right around the corner for all of us!  

330 and an enourmous spleen, weight lose and night sweets :-(

A remarkable story you lived. I’m sure that the Doctors
were doing what was available at the time. A collection
of brutal choices were all that was in their medicine cabinet.

I remember my first visit to my Doc and he said “I got
bad news and good news” The bad news is you have CML,
The good  news is.. ‘You only have to take a pill a day.
He did tell me about early in his career the stark and difficult
choices that were the only medical options, that most often led
to transplant within five years.
It’s as if you went from the stone age to the modern age in 24years.

In contrast to your story about your Dr. saying, Internet not being a reliable
resource, my doc told me if I wanted to know more about CML, “Google it!”
Perhaps our Doctors are relying more on the “Self diagnosis then they will admit.

I’ve been, “Googleing ever since...

Thank you for sharing your experience.
Good health to you.

Romo

Dennis,

This is an amazing story, thank you for sharing.  Being 46 and recently diagnosed I feel pretty damn lucky that we are benefitting from all the research and past trials.  

r06ue1

Thank you. A cure would certainly be great. It will happen I’m sure.

Thanks Poppert.

trusamandfive

heres to your 70th birthday!

Another story regarding this Internet topic:

A few months back I was at my Primary Care Dr’s
office with complaints of sinus trouble.
He came into the exam room and opened up a lap top
computer that was in the room and started asking me questions.
I would answer his questions and after a while, he looked at me,
he looked at the lap top and said, “ It says here that you have a sinus infection,
and the beginning of a bronchial infection”. “ We have an antibiotic for that”!

He used the same lap top to send my prescription to my pharmacy.

Someday I will be grocery shopping and feeling a little down and step into a
Kiosk near the dairy isle, hook myself up Bio-Metricly, to an Artificial Robot Dr,
tell him my symptoms and have my prescription come rolling out of the vending
machine in the same booth.

Pay with my Bio-Chip imbedded where I use to keep my wallet.

Romo having fun...

Amazing story of survival!!!!! Inspirational for a newbie like me!