116 replies to this topic

[Goldfinger]

By the way- are bone biopsies  driven by test results?   Or are they scheduled every few months regardless?

[MACELPatient]

I've had worse experiences at the dentist.

[MACELPatient]

I believe it could be both.  I think it depends on how you are responding to treatment and your doctors protocol.

[scuba]

By the way - anyone know how many patients are taking Gleevec?  

Assuming 5,000 new CML diagnosis per year - the numbers add up over time.

Not all 5,000 will take Gleevec of course.

[Tedsey]

Michael,

Glad you made it though!  Hope your healing is quick.  Good luck!

[Tedsey]

Goldfinger,

Good luck with the biopsy.  My 2nd is this Friday.  Not so nervous as I know what to expect.  The first one was not that bad.  As Phil said, it is worse waiting for the results.

Please see Trey's CML Testing Explained.  http://community.lls...d/2821?tstart=0

[Goldfinger]

Tedsey-

In retrospect, I probably had a bone marrow biopsy already. I went to the hospital with a 240,000 wbc count. They were doing all kinds of tests to see what I had. Wouldn't they do  a bone marrow biopsy during that testing  process if they came up with a diagnosis of cml? I don't remember them saying anything about a biopsy but I was in a mental fog from learning I had some type of cancer.

Steve

[Trey]

Even in a mental fog, most people would remember lying on their stomach on a table while a huge needle was jammed deep into their butt-bone, followed by a sucking of marrow through a syringe.  If you only think you might have had one, then you did not.

But if you did not have a BMB at diagnosis, that was improper procedure by your Onc.

[scuba]

I was looking more closely at my first lab report and it showed:

b2a2 transcript = 155.417 (units?)

e1a2 transcript = 0.019

I read that Gleevec is very effective against b2a2, but not as effective against e1a2.

I don't know if this so-called "co-expression" is significant.

Anyone know what this means?

[sandimartini47]

Michael,

We have all been where you are.  I was diagnosed in Sept.08 and started gleevec in Oct. 08 and am doing well.  I  have some bone pain and every once in awhile some nausea but my onc. gave me reglan for the nausea and it helps.  As far as the bone marrow biopsy--you are right--that is no fun but request sedation when you get it done.  Sometimes you have to insist with your oncologist--which is what I had to do.  The first two times I had a bmb, I had nothing but some local anesthesia and the third time, my oncologist gave me ativan and morphine and what a difference.  Some patients are given versed and you are in a conscious sedation.  It is so much better--you hardly feel it.  Ask you onc. when you have to get the biopsy again.  This is a great site; we are all here for you and don't hesitate to ask us anything about cml.  You can get so much information on this site.  Trey really helped me with questions when I had a setback and everything he suggested, my onc. said, "that is a good idea."  As Trey says, "You have to be your own advocate."  That is sooo important; I found out just how important it is.  Make sure to also keep a hard copy of all of you tests--especially your pcr results.  Take care and we are here for you, sandi

[scuba]

Thanks Sandi!

So long as I can have my evening wine with my wife - this will be o.k.  I will probably be more interested in my liver enzymes than anything else!

We are wine lovers and enjoy the many vintages.  We built a wine cellar as part of our home construction - I'd hate for it to become a museum piece.

The CML as everyone says here is a surprise.  The co-expression of the two phenotypes is reported that it is the beginning of the body moving into a more blast phase, but there is debate on that.  I have no idea how long I have had CML.  My WBC's were low compared to others with the disease at initial diagnosis. 

I am hopeful that the Gleevec will work fine.  It is chemistry after all - and I do hope they pin down the stem cells and identify a way to eradicate them using our own bodies immune system.

And Trey is great!

[Tedsey]

Steve,

I totally understand what you mean about being in a mental fog while waiting for diagnosis.  I felt like I was having a very bad dream.  I went from being a super-healthy person to suddenly being told I was very sick and being poked and prodded for 5 days.   But I have to go along with Trey.  No matter how deep the fog, it would be very hard to forget your first BMB, unless you were unconscious for some reason.  I would check this out.  Best to you.

[Trey]

The 3 main types of Philadelphia Chromosome are b2a2, b3a2, and e1a2.  The b2a2 and b3a2 are by far the most common, with e1a2 found in fewer than 5% of patients.  Just having the e1a2 by itself is not a bad sign, as long as there are no other high risk factors identified by the BMB.  It certainly does NOT signal transformation to blast phase.  Gleevec should work against the e1a2.  It is a good sign that the e1a2 is the minor player.  If the e1a2 becomes undetectable quickly while the b2a2 hangs around for a while, that will be a very good sign.  There are others here with both types.  Time will tell, but especially because you were diagnosed early, it should go well.

Keep enjoying the wine.  Enjoying life despite CML is the best revenge.

[Goldfinger]

I went to Siteman Cancer Center here in St Louis for treatment so obviously they know what they are doing. The closest thing to a bone marrow biopsy was the thin slice of bone they took from my tailbone. I didn't have to lay on my stomach for this procedure. They had me on my side and while I did feel a lot of pressure when they were extracting it- by no means was it painful. They never used a needle to extract anything. I hope that doesn't change.

[scuba]

http://content.nejm..../full/336/5/337

Thanks Trey -  Ran across this report which you may have seen.

It is possible for regression to occur leading to remission.  In this patients case, his WBC levels were similar to mine (i.e. 30,000 +/-) when diagnosed - but there was no Gleevec back then so they could only monitor him.  And to their surprise, he went into permanent remission (11 years) without any treatment whatsoever.  Interesting.

Before I started Gleevec - my blood count was 38,000 at peak - then one week later when the Onc was ready to start me on Gleevec, my count fell to 33,000 and my RBC/hemoglobin rose a bit to be near normal.

I don't know if that means anything - but I was feeling better (less anemic).   I wonder if I should have waited a bit to see if the WBC's would go back to normal on their own.

Who knows?

Anyway, I have been on Gleevec now for 5 days.  I am sure it's attaching itself to the ADP receptor sites and limiting Tyrosine Kinase production from the BCR/ABL gene.  But I do hope that the underlying stem cell with the PH-chromosome is somehow disappearing.   In the case reported above - that occurred very fast, within months.

[Trey]

Odd things happen.  There are 2 known cases of what has been called "spontaneous remission" in CML over the past 30 years, and it occurs in other diseases.  But those are a very lucky few.  It would not be wise to wait and see if you are a third example.  Extremely, extremely, extremely unlikely.

I have said that if you treat the mega-lottery as your retirement plan, then you might also like the idea that a BMB could, on a lucky shot, suck out the originating CML stem cell.  But I would not treat that as my cure plan.

WBCs continually change.  Your downward change was not unusual.  I had the same thing occur.  An upward change would have followed soon.  Be glad for Gleevec and the other drugs and let the cure come along when it comes along.

[scuba]

... absolutey... just going through the first week, read everything, learn as much as possible, walk the same road as everyone else.  I'm thankful I took genetics and cell biology courses in college. 

[scuba]

I have my first biopsy results back - This was done before I started Gleevec:

BCR/ABL: 43.33%

Log: 1.637

Blasts: 5.7%

1. 5.7% CD34+ progenitors

2. 24%  Basophils

3. 59%  Left-shifted, hypogranular maturing granulocytes

4. 1.4% Monocytes

5.  1.8% small T cells with normal antigen expression:  CD4:CD8 ratio = 0.8-1.0

6.  0.1% mature, polytypic B cells

7.  5.7% NK cells

After one week on Gleevec,

My WBC = 33.6 (no change from one week prior when the biopsy was done)

RBC = 4.31 (no change)

Platelets = 473 (up a little bit)

Any comparisons with others?

Doctor says now we monitor the progress of Gleevec and keep an eye on the liver.  He expects a normal track down to cytogenetic remission in six months and molecular remission at one year.  We'll see.

[Trey]

Blasts are in the medium range for chronic phase.  Basophils a bit higher than normally expected for chronic phase, but as long as they decrease, no real problem by itself.  Your PCR result is done on the International Scale.

http://www.fpnotebook.com/Hemeonc/Lab/NtrphlCnt.htm

http://community.lls.org/thread/2791?tstart=0

[scuba]

There was some discussion with the Oncologist this morning whether I was borderline 'accelerated' phase or not - but he felt that monitoring what the 400mg Gleevec does over the next month will guide his judgment.  He was more concerned with Blasts than with Basophils.