11 replies to this topic

[snowbear]

It's been a long road to diagnosis for me.  I first got sick and was hospitalized in 2008 for high wbc, fever, swollen glands, and severe body aches.  Docs gave me IV steroids and antibiotics, I improved, and was released without an explanation.  I seemed to recover, but over the next few years more symptoms developed.  I was eventually diagnosed with 2 rheumatic diseases but last summer, my rheumy started second guessing herself and referred me to a Hema/Onc after repeated high WBC's.

 

Testing revealed the Philadephia chromosome and BCR-ABL fusion gene.  Doc has no question as to the diagnosis, only the phase I might be in.

 

My biggest fear is that this was not caught early enough and that I may be in a more advanced stage.  I have many symptoms.   I lost 40 lbs last year without trying and more recently another 10.  I have muscle, joint, and bone pain which can be severe at times.  I've had a few episodes of profound weakness and fatigue which the Hema/Onc said may have been cytokine storms.  If it happens again, I am to call her right away and may need to be hospitalized.  I don't have drenching night sweats, but I wake up between 2-3 am every morning throwing all of the blankets off, turning my ceiling fan on, and pulling my hair up because I'm hot. I run low grade fevers, have rashes, little to no appetite, and generally feel blah.  My PCP started me on Cymbalta a month or so ago and it is helping with both my energy and pain levels.  This has been going on for months.

 

Can you know when you've progressed past the chronic phase or do you just have to be patient and wait for the bone marrow biopsy results?

 

I still can't believe this is happening, but I want to know as much as possible as far as what to expect.  Doc makes it sound so easy, but I know from the rheumy stuff that it's never as simple as they say!!

[JPD]

I do not think there are any symptoms of accelerated phase or blast phase.  So, I suppose you just have to wait and see.  I went through the same panic (as Im sure most of us here did) but you are probably in chronic phase & the drugs will probably work wonders on you just as they have for most of us.

 

As to what to expect - have they started you on meds yet?  Have they mentioned what they are going to use?  The side effects vary but most are worse at the beginning and then plane off to very tolerable levels.  Im a year plus into treatment and all I have is less leg hair than before I began (side effect of Tasigna).

[Antilogical]

Have you had a FISH or PCR test done with blood test or bone marrow biopsy (BMB)?  That should help the hem/onc to pinpoint the phase of the disease.

[Trey]

The definitions of advanced phase CML vary by agency, but generally center around blast count and basophil levels:

http://www.cancer.or...ogenous-staging

 

Overall it is unlikely you actually had CML in 2008 when your were sick as described.  CML takes about a year or so to be diagnosed in most cases as it develops somewhat slowly at first.  CML can go for maybe a couple years after initiation before the patient is unable to function very well.  It seems that you may have had CML for a couple years.  That makes advanced stages more likely, but not a certainty.

 

The BMB report should show the stage.  Otherwise the CBC report may show high blast count, and if so it could provide a possible clue about the CML phase.

 

EDIT: I see in another post you wrote today you said your blast count is 25%.  I assume that is peripheral blood.  That would definitely be late advanced or early blast phase.

 

But the real issue is whether the CML TKI drugs work or not.  If they work well, and continue to work well, then the diagnosis phase becomes less important.  But the drugs do not work as well for blast phase CML.  DO NOT start on Gleevec, but rather start on Sprycel or Tasigna.

 

You may want to read this:

http://community.lls...ewly +diagnosed

Edited by Trey, 25 November 2014 - 09:55 PM.

[snowbear]

My bone marrow biopsy is scheduled for December 12th, but I am at the top of the cancellation list so I may get in earlier.  My doctor is not doing the BMB as she is recovering from hip surgery.  Radiology is going to do it, which means I get sedation...yay.  

 

I was diagnosed from a positive Philadelphia chromosome and BCR-ABL gene.  Doc has no doubt that I have CML - only question is how long have I had it at what phase am I in.   Her plan is to start me on Gleevec as long as I'm still in the chronic phase.  She said if it's more advanced than that, then she will discuss options with me at the follow-up appointment. 

 

I know I have a high WBC with 25% immature cells (not sure if those are considered blasts), high platelet count, red blood cells are being destroyed too fast (hemolyzed), high reticulocyte count, high lactic acid, high B12, low iron saturation.  

 

I feel like I've been hit by a truck.  Achy, weak, tired, swollen glands, flu/mono - like.  My PCP started me on Cymbalta a few months ago (thinking it was RA/SLE & fibro pain) and it helped at first, but the pain is starting to break through.  I'll just do what I can to get thru these next few weeks then I hope to take some time off work to adjust to meds and recover.  

[CallMeLucky]

Does your Dr specialize in treating CML?  It sounds like your case may be a bit complicated and for that reason you may want to consult with someone who specializes in this disease?  Are you going to a cancer center or local facilities?  Do you have the option to go to a major cancer center?  Where are you located?

[snowbear]

I am going to UPMC Shadyside in Pittsburgh. My doctor is a Hematologist/Oncologist and she also does bone marrow transplants.  I don't know if she specialized in CML specifically, but she did mention that she has several patients with CML and they are all doing quite well.

[pammartin]

If he is still around I would steer clear of Sahovic at West Penn. He might be a great transplant doctor but that is his first priority. Explore your options before you hear transplant. Had I not found this site and asked for second opinions through Cleveland Clinic I believe he would have convinced me to go transplant, which I did not need. IMO
Pam

[patcanfield]

almost all ins will pay for a second opinion and you surely need 1. i had your almost exact symptoms but not the wt loss ,a memo/onc diagnosed me  and i had a biopsy oct 8 and went to m d anderson in houston for a 2nd opinion which he also said i had cml, very high white cells and platelets almost 2 million and my arms and legs were going numb, i started tasigna in aug and now all my blood work is normal and have not got the result of bone marrow biopsy nov 19 but my dr believes it will be good. you need to go where they treat lots and lots of leukemia not just 2 or 3. people fly in from all over to go to md anderson at houston, also tasigna or spry cell is lots newer drug than gleevec.

[Antilogical]

There are lots of good options in Pittsburgh.  I am being treated at Hillman Cancer Center, and my neighbor (who also has CML) sees someone at Shadyside Hosp.  Both of us like our docs, and we're both doing pretty well and feel comfortable with our treatments.

 

(P.S. - The Mario Lemieux Center at Hillman is awesome!  Everything is set up for the comfort and wellbeing of the patient.  I like it.

[CallMeLucky]

There are lots of doctors who treat cml but there are a few who really know the disease inside and out. Having cml patients that are doing well usually has nothing to do with dr. The drugs work for most people, so the doctor thinks they know how to treat it well and for the few who don't so well they just chalk it up to the disease. With anything this serious always get a second opinion. Then if you like your dr and feel comfortable you can stick with them. Good luck.

[snowbear]

The closest CML specialist to me is in Ann Arbor, Michigan.  I called my insurance company this morning and they said I would need a referral from my PCP and they would review the request.  So I called my PCP's office and his nurse informed me to wait until after the BMB and follow-up appointment, then go from there. 

 

I may seek out a second opinion here and try to go to Ann Arbor if I don't respond to meds or if the leukemia is at an advanced stage.  I just don't know yet.