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Chronic myelogenous leukemia


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#1 Taglie

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Posted 06 February 2016 - 05:41 PM

Hello,

I thank you for the opportunity to ask a question to you through this blog. Sort of a long question but hang with me if you can.

About 20 something years ago I developed pain in my lower right back.  After a long time and finally an MRI.  I had "arthritis".  Well, years more, I finally was referred to a rheumatologist who officially diagnosed me with ankylosis spondylitis.  It's a chronic illness that fuses the spine. Anyway, within the last year, I developed extreme pain in my left elbow.  Within the last 6 months, it has spread to my legs, so much so that it is hard to walk and my neck, my shoulders, wrists, knees, hips, well pretty much every single part of my body.  It feels 24 hours a day like my bones are eating themselves away. I don't know how else to explain this pain. Consistently my labs show high WBC, and other inflammatory markers.  A previous CT scan showed enlarged spleen. (Dr. didn't even say a word) only reason I know is because I got a copy of the report. My recent labs show very high sed rate, crp, wbc and basophlis high. I have been extremely tired this last week and falling asleep on the way to work and hard to keep my eyes open.  Also, my gums bleed when I brush my teeth, and my teeth are very sensitive.  This started about 6 months ago (bleeding).  My Dr. did a blood test and found Vitamin D - low at 17.  Before that visit, is when the pain in my legs were so bad, and I was so tired, that blood test showed anemia.  I had to have injections every day to get it back to normal.

My test was taken one week ago and no Dr. has called me back or sent a letter even that they reviewed it.  Might be a slip up- I just got done sending a email to my Dr. for a referral to a hematologist.  Nowadays, I strongly believe we have to be our own advocate. When I mentioned how much pain I am in all over in my body at my appt. the Dr. said I probably have fibromyalgia and will most likely review the labs as inflammatory due to the A.S.  But, in my heart I feel something else is going on as well. My research led me to Chronic myelogenous leukemia. 

 

So my question to you is:  How long did it take to get a diagnosis? Do my symptoms sound like it could be CML?  I just want some insight.  I am dying inside and I need hope.  IF it is only my disease AS there is no cure and I will only get worse. 

 

Thank you for a little insight.



#2 RayT

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Posted 06 February 2016 - 06:55 PM

If you're going to be seeing a hematologist, I would wait for him/her to give you a definitive answer. You didn't mention HOW high your WBC has been and if the readings have remained level or trended up/down. Leukemia is only going to get worse without treatment. It's quite possible that your docs have already ruled out leukemia, but another independent specialist's opinion will help you know for sure.

As a paramedic, I would say that the vast majority of your signs/symptoms are consistent with the back problems and/or anemia you've been diagnosed with. Have you asked your current physicians if they've considered leukemia? They should be able to easily explain why/why not.

#3 Taglie

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Posted 06 February 2016 - 07:24 PM

Hi, 

 

Thank you for the response.  My Dr. (new-first time seeing him) has not responded to the lab tests yet. Dr. before him, was new- I only saw her 3 times.  She found the anemia and low vitamin d and figured that was why I was so tired and gums bleeding. She did not have my history-records.  She referred me to Reumatologist for the inflammation and from there, I received the diagnosis of A.S.

due to my long history of back pain.

 

My Dr. before that for 20 plus years never really did anything and never said anything about the inflamed spleen. My new Dr. does not know I have an enlarged spleen (or had).

 

So, I am at square one with this Dr. he ordered the labs on my recommendation to see where the inflammation is.

 

sed rate 27
crp 16
wbc 10.9
basophils 0.3

 

I will see what he says when he finally responds.. I know that having an auto-immune disease causes high inflammation markers but having A.S doesn't necessary spread through the entire body with so much pain-that is where I am stumped.  Quite frankly my back hardly bothers me.

I may be way out there.  Who knows.  But, I am tired of being in so much pain, being so tired, bleeding, etc. That is why I reached out to see if my symptoms sound familiar to leukemia. I am not self diagnosing, just researching the what ifs....  



#4 SunNsand

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Posted 06 February 2016 - 07:56 PM

Diagnosis happens pretty fast, at least for most of us. It took two blood tests for my Onc to have a diagnosis of CML. Your white count is pretty normal if that eases your mind any. Most of us with CML had high white counts at diagnosis. Mine was 159, I've seen up to 500 wbc. Hope you get answers soon, it is frustrating when you know something is wrong and you're waiting for answers.

#5 Taglie

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Posted 06 February 2016 - 08:23 PM

Thank you.



#6 rcase13

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Posted 07 February 2016 - 08:28 AM

Yeah I think your in the wrong forum. But that is a good thing! LOL I would avoid this forum if possible!

Good luck and we hope to not see you back! But if we do we will be here to support and answer questions.

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!


#7 Trey

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Posted 07 February 2016 - 12:02 PM

You do not show any signs of having CML.  WBC for most of us at diagnosis was over 100, not like your levels which are just "high normal". 






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