13 replies to this topic

[Tedsey]

My recent BMB report came back.  All is the same as last time.  So, it appears I am still CCyR because the report says that the sample shows no morphology for CML.  I am not sure what the "morphology" is exactly.  I assume they cannot find the Ph+.  However, it states that cytogenic studies are pending.  A little confusing for me.  But phew!  Still in CP.  Anyway, my blasts have increased.  They came out in the 5-8% range.  I was previously around 2% at dx and no increase with the last BMB last Dec.

The pathologist wrote she feels the increase in blasts is due to me being severely pancytopenic.  And it is just the marrow generating more cells to "fill the void", so to speak.  However, I have erythroid hyperplasia.  Nothing new there.  Just a bunch of immature red cells.  Cannot seem to kick this anemia thing...and I get confused if this is due to the TKI or the leukemia.  But I digress...  The increased blasts worry me.  I am guessing that the BMB report will be pretty much consistent with the "pending" cytogenic studies (whatever they are--I am confused).  Still waiting on the molecular.  Perhaps it is just me being a doe in the headlights with this whole CML thing, but I get a bad feeling.  Should I be concerned?

Teds

[Pin]

Hi Teds, I hope the pathologist is right about the reason behind the blast increase - it sure sounds logical especially if you are still CCyR. But it still sucks when we get confusing results like these that send our minds racing - it's like trying to put a puzzle together as fast as you can when you only get the pieces one at a time and you aren't really sure what picture you're making. I'll let others weigh in on the possible meanings for you though. I do hope the molecular comes back with good results. All the best, Pin.

[reedgirl]

Teds,

  All of this is confusing....I have to read and reread posts with another tab open to a medical dictionary so I can look up terminology and I'm still confused   Greg has only had 2 BMB's done, one at diagnosis and one six months later, Dr Talpaz said he doesn't see the need for another one since his last BMB didn't show any leukemic cells, guess they are just using the PCR test.  Why are you still doing the BMB?  The cytogenetic report that came along with Greg's at diagnosis showed all his chromosomes and the abnormalities that he had.  He had other chromosome switches not just the 9:22.  I remember it taking about a month until we got the final report from that back, it took that long because he had these other chromosome abnormalities.

  I'm curious to see what other reply's you get here to help understand your results, also it will be interesting to see what your cytogenetic report shows. Try to keep thinking positive, hard as that may be, not sure how to do that either...but try and just focus on the CCyR.  Does anyone ever get to the point of not worrying??? If so what's the secret, how does one get to that point in this life???

Best wishes,

Audrey

[Trey]

The BMB "morphology" shows everything except the Ph+ Chromosome count, which is the cytogenetics part.  So the BMB shows a lack of any signs of CML in the size, shape, and numbers of cell lines, no fibrosis, etc.  You do not have the BMB Ph+ count yet.

The erythroid hyperplasia means you have increased levels of red blood cell precursors.  That can occur during severe anemia as the body struggles to correct the condition.

The blast count can change for several reasons.  When cell counts are low, the body tries to produce new cells rapidly.  This often comes in spurts.  If you have a BMB during one of those spurts, the count can be higher.  If the BMB Ph+ count comes back zero, then it is probably not a problem.  Because of your severe anemia, your body struggles to have the proper levels of cells, but cannot get there.  Also, blood making is not a straight line process.  It is a cycling process with peaks and valleys of production.  If a BMB is done at a peak it can look odd.

[SunNsand]

Tedsey - I don't have answers but Trey's explanation of the peaks and valleys of cycling is interesting. I didn't realize that and it makes sense, hopefully that's what has affected your results.

Pin - Your analogy of the puzzle pieces is perfect!  I'm still staring at puzzle pieces that I know I've seen before. Trey's guide is wonderful, don't know what I'd do without it.

[GerryL]

Hi Teds,

When do you talk to your specialist about the results?

[Tedsey]

Thanks everyone.  I got an amended report that included the cytogenic studies today.  Still CCyR.  I also was coming off menstruation during the BMB, so that my explain all the immature red blood cells.  The period probably confounded the existing anemia.  I feels so bad to think that the anemia is a result of a still disfunctioning marrow...still!  I want to heal already.  All I want for Christmas is MMR.  I wonder if things will ever get better.  I get so discouraged and depressed.  As a matter of fact, it stated on the BMB report that the procedure was done out of suspicion of disease progression.  It never said that before.  The report was written by the same pathologist as the last two times.  I wonder if my onc isn't telling me something.  She has already told me I am at high risk to progress.  Not quite sure why.  She mentioned the high WBC at dx, neutropena, low PLTs and the anemia.  However, I hang on to the hope that I am not just headed down the slippery slope to BMT.  I hope that suspicion of disease progression is just something they have to report for insurance purposes, or that is just common to say in reports.  I guess why else would a BMB be done in my case anyway?  And there is still Tasigna and drug trials.

Well, if the molecular comes back improved, I may go down to 1 BMB per year.  This was my 4th in 21 months (but not a lot compared to others).  I am getting used to them.

Thanks for all your support!

All the best,

Teds 

[Tedsey]

Hi Gerry,

Thanks for always being so kind to me.  My specialist emails me right away when the results come in.  She is great about that.  She actually wrote to me yesterday (Sunday) to tell me that I was still CCyR.  She also added "Great!".  I guess after all this time, I am still sorting out what I understand and what I don't.  And I have come to believe that there are a lot of "unknowns" for even those who are most knowledgeable.  Although I get scared and upset, I still hang on to "they just might be wrong about me".

Take care,

Teds

[GerryL]

Hi Teds,

I didn't like to comment much until the experts - your doc and the guys here had commented.

My wish for you is that if your body isn't quite ready yet to move to MMR, that it is able to maintain your CyCR until we get a cure for CML.

On a side note - is your pill one of the ones which you can just continue to take and not bother to have a period?

As we grow up, we learn that even the one person that wasn't supposed to ever let us down, probably will. You'll have your heart broken and you'll break others' hearts. You'll fight with your best friend or maybe even fall in love with them, and you'll cry because time is flying by. So take too many pictures, laugh too much, forgive freely, and love like you've never been hurt. Life comes with no guarantees, no time outs, no second chances. you just have to live life to the fullest, tell someone what they mean to you and tell someone off, speak out, dance in the pouring rain, hold someone's hand, comfort a friend, fall asleep watching the sun come up, stay up late, be a flirt, and smile until your face hurts. Don't be afraid to take chances or fall in love and most of all, live in the moment because every second you spend angry or upset is a second of happiness you can never get back.

- Unknown

[Marnie]

Hang in there, Tedsey. . . don't put any energy into the negative side of things (easier said than done).  I like Gerry's quote. . .though again, easier said than done. . .

[LoriM58]

Love the quote Gerry,   thanks for the needed reminder!

Lori

[Happycat]

Teds,

Gerry has a good point.  Maybe you should look into the other BC pill options.  I took Seasonale for a while, had only 4 very light periods a year.  I loved it!  AND I got a a really kicky pink-and-black bag at the doctor's office when I got the script!  I don't use the pill anymore, but I love and still use that bag!  I only got off the pill when my blood pressure forced me.

Anyway, there are lots of options to reduce or eliminate periods - and they are reversible if you decide on more kids.  If it helps stabilize your counts and keep the anemia at bay, it might be worth it.

Traci

[Trey]

Sounds like your body was responding to the need for more red blood cells.  Most people don't realize that their bone marrow is a churning factory that is being whip-sawed by the needs of the body -- "do this, do that, no stop -- do this instead".  The marrow is often in a state of "make up your damn mind!!!"  If everyone had their marrow tested continually they would worry that they had all kinds of dread diseases.  The key to test results is the trend, not isolated results.

Another thing I may not have made entirely clear earlier -- blasts are not a bad thing of themselves.  If they are leukemic blasts and they are high, then that is bad.  But blasts can be either bad or good cells, so if they are good (non-leukemic) blasts, than that is a great thing, especially for someone with anemia.  So blasts are either leukemic or normal blood cell precursors.  The problem is that these tests do not know which category they are in.  So docs assume that all blasts are bad when they see them rise.  But when dealing with leukemia, the blasts can sometimes be deceiving as the marrow struggles to recover from the leukemia and possibly associated drug myelosuppression or anemia caused by the drugs.  And a test done a few hours before or after on the marrow would not show the same results.  I believe that a lack of understanding of this issue about blasts has sent many people into an unnecessary transplant.

I also do not know why your Onc believes she is Karnak the Magnificent.  She thinks she knows something that the tests do not show, but does not have any reason to tell you that you will progress to BMT except for blurting out shartations unsupported by test results or other facts.