11 replies to this topic

[acb]

Doesn't have quite the same ring as Shakespeare, does it?

Anyway, here is my history and my question:

7/9/10 - Diagnosed by symptoms and tests on PB only (Flow Cytometry, FISH, etc.). No BMB was done at diagnosis. Was put on Sprycel 100 mg.

October 2010 - PCRU (I think? If not October, it was November -- you would think I would remember!! I am not on my home computer to check).

Dec 2010 -- still PCRU

Jan 2011 -- had to switch oncologists due to insurance - no testing with him until March

March 2011 -- PCRU with this new doctor and different lab

June 2011 -- had to switch doctors AGAIN due to 2nd doctor using a lab out of my network (when they didn't need to) and because they were horribly unorganized -- took over a month for PCR results, never returned phone calls, etc., etc.

July 2011 -- PCRU again at my 3rd doctor and lab (although it was from Quest which was the original lab at my 1st doctor - not sure if it was the same exact Quest though -- aren't there several?)

July 2011 -- New doctor wants me to get a BMB because I have never had one (for the sake of thoroughness and to make sure there isn't anything hanky there -- my word, not hers)

Thoughts, considerations, opinions -- do I need a BMB now? I realize there is no harm in getting one (other than the pain!!), so I will probably not try to talk her out of it, but just wondering other people's thoughts.

Oh, and any suggestions on how to prepare for it? When I asked her, she just said, you've had kids, right? Then you will be fine. I only have problems with men, who have never gone through childbirth.

THANK YOU for any insight! (Oh, and I should mention that I hate needles!!! Pain, I can deal with, needles not so much. I am obviously learning to deal, what with all the exposure during the past year.)

[GerryL]

Reminds me of when I had my first BMB - nurses said they would help me breathe through the pain. I found saying ouch a number of times helped instead.

If you're at PCRU, you'd wonder why you need a BMB - but I'll leave Trey and the others to make the final comments.

[Marnie]

My advice. . .

Keep your butt muscles relaxed.  Easier said than done, I know.  Bring an iPod and listen to it (I actually enjoyed chatting with the doc while he screwed the big old drill into my hind end, but I've heard that listening to tunes can really help).   For me, the worst part of the experience was getting the stickum from that damned pressure bandage off my butt 2 weeks later (or however long it was supposed to stay on).  I was scraping glue off my behind for days!!

Marnie

[Trey]

Your Onc used poor procedure for diagnosing you.  A BMB is an essential part of the diagnosis.  It seems that a peripheral blood FISH was used for your diagnosis.  That can show the Philadelphia Chromosome, but it should be used in conjuntion with a BMB.

The reason I bring this up is that getting to PCRU in about 3 months is extremely unusual.  Maybe you were diagnosed very, very early and are very, very responsive to Sprycel.

Normally a BMB at your stage is a waste of time, but in your case I think the Onc just wants to make sure all is OK in the marrow, which is a reasonable approach, even though the probabilities of finding anything is low.

Do you have a copy of the report to know what percentage of leukemic cells the diagnostic FISH showed?  If it was a very low percentage, then I have follow-up information.

[CallMeLucky]

You didn't mention if they did a PCR at diagnosis.  Did you ever have a PCR that was not PCRu?

[Susan61]

Hi:  This is just my take on all of this.  Nobody should be diagnosed through just blood work initially.  When they suspect CML, they should do a BMB for a baseline to begin with.  Then once you reach your cytogenetic response, my Oncologist felt that the BMB was no longer necessary.  I have been doing PCR testing with no BMB since 2001.  So many doctors are now just doing the blood work from the very first indication of possible CML.  You have switched doctors,and this doctor seems to want things to be done right being this was never done.  She wants to be sure she has all the proper information, and I compliment her on being efficient in your diagnosis.

    As for the BMB,  I did have a lot of pain with the first few, until my doctor gave me a shot of demerol along with the versed IV and Lidocaine.  Then I would just go into a semi sleep with no pain, but was aware of what was going on.  There is no reason for anyone to have pain anymore with this procedure.

Sounds like your doing very well, but if you like and have faith in this Oncologist I would just ask if after this BMB, could I go back to just PCR Testing.

Susan

[acb]

Trey,

I have managed to misplace my folder of test results, etc. (I am hoping that I did not accidentally leave it at my last doctor's visit!) My initial FISH was 85.5% I believe. In searching back when I have asked questions before, I found this info about my results that I posted in Oct 2010.

*Diagnosed 7/9/10; WBC 149 and platelets 1356. I took Hydroxurea and  allupurinol in the beginning; started Sprycel 100 mg 7/19/10

*I  have 2 different reports from two different labs from my initial  diagnosis. These are both done from blood taken at the same time. No BMB  or BMA was done at my initial diagnosis (doctor said it was not  necessary -- I now know that is incorrect):

1.  FISH from 7/9/10 (Probes: 8 Analyses: 6) - 214 Cells counted; 183 nuc  ish 9q34(ABLx3)22q11.2(BCRx3)(ABL con BCRx2); 31 nuc ish  9q34(ABLx2),22q11.2(BCRx2). Lots more info and then "This specimin was  85.5% BCR/ABL fusion-positive. There were 200 cells counted for the  following statements: Deletion of the S522 locus at 7q31 was not  demonstrated by FISH; Trisomy 8 was not demonstrated by FISH; This  specimin was 100% ETO/AML fusion-negative. Translocation 8;21 was not  demonstrated by FISH; THe MLL rearrangement was not demonstrated by  FISH.

2.  FLOW CYTOMETRY REPORT from 7/9/10: CML Transolcations 5(9;22) BCR/ABL1  (b2a2) Weak Positive; CML Translocations 5(9;22) BCR/ABL1 (b3a2)  Positive

    Interpretation: Peripheral blood smear with marked  leukocytosis, basophilia and thrombocytosis, left shifted granulopoiesis  and up to 1% Blasts. Flow cytometric immunophenotyping reveals increase  in blasts (1.4%). **There is a lot more info under headings Light  Microscopy, Immunophenotyping, and Antibodies used. There is also DNA  Analysis and FISH analysis. This FISH analysis says Number of cells  positive for BCR/ABL 142 and number of cells negative for BCR/ABL 58 for  a total of 200 cells analyzed.

*Results  from FISH test on 8/19/10: 200 cells counted - 74 nuc ish 9q34  (ABLx3),22q11.2(BCRx3)(ABL con BCRx2) and 130 nuc ish  9q34(ABLx2),22q11.2(BCRx2). This specimin was 36.3% BCR/ABL  fusion-positive, a decrease from 85.5% in the 7/9/2010 specimin.

*Results from PCR test on 9/14/10: 0.012 H   ratio 0.000   Further down the page it says: BCR-ABL: ABL Ratio 2.537 Log Reduct

*Results  from PCR test on 10/12/10 (given to me over the phone -- still have to  get copy of lab report): 0.000  (did not know Log Reduct info)

I have since had PCR tests in Nov 2010, Dec 2010, Mar 2011, July 2011 (a little late due to switching doctors), all of which said Undetected (0.000). I have to admit that I was skeptical at first myself, but since I have had similar findings from 3 different labs and for 5 PCR tests, I feel fairly good about it. However, now you make me wonder if I have something different than CML!!!

I know that PCRU in 3 months is rare with Sprycel, but the findings from the original study done for using Sprycel for first line use showed 8% with major molecular response in 3 months, 27% in 6 months, etc. So better than 1 in 4 had MMR in 6 mths. (Of course, this was only a study of 519 people, with only half on Sprycel.)

Here is an excerpt from the article I quoted above in the New England Journal of Medicine. http://www.nejm.org/...15#t=articleTop

The rates of a major molecular response by 3, 6, and 9 months after the  initiation of dasatinib treatment were 8%, 27%, and 39%, respectively,  and the rates after the initiation of imatinib treatment were 0.4%, 8%,  and 18%, respectively (Figure 1B).  The time to a major molecular response was also significantly shorter  with dasatinib treatment than with imatinib treatment (hazard ratio for  shorter time to response, 2.0; P<0.0001).

[acb]

Lucky,

I did have a PCR test in Sept 2010 (2 months after diagnosis) that showed .012, a 2.5 log reduction (see msg to Trey) If they did a PCR test at diagnosis, they did not share it with me and I wasn't smart enough to ask at the time. :-)

I feel like I have sooo much to learn! I have to admit that I have just kinda coasted through, since my results have all been pretty textbook. Not necessarily a smart move on my part.

[Trey]

Given that explanation, you have CML.  The FISH result was high enough to rule out false positives.  It is interesting to me that at diagnosis your WBC, Platelets, basophils all showed that you were not diagnosed early, just about average timing.  So if you became PCRU in 3 months, that is a pretty amazing feat; somehow I never trusted telephone results, but I hope it is accurate.

You gave Sprycel "time to MMR" figures, but the "time to CMR" (PCRU) figures are very different and much longer.

[grannyd]

Hi Trey, I had my 3 month PCR test from Cleveland Clinic in April, it showed weak positive, at 6 months it showed negative for Philadelphia Chromosone. That is when my doctor called me and told me I am in CMR. I take tasigna, would you consider this too early for CMR??? Thank you so much for all the info you give. When diagnosed my WBC was 38, It was 18 to begin but went to 38 by the time of diagnosis after BMB. Thanks again-- granny d

[Trey]

Gran,

You were diagnosed very early.  A 6 month PCRU is very good and given the early diagnosis and Sprycel it makes sense.

[acb]

Thanks, Trey for the info! The information in red was what I had copied from an old message that I had posted back in October. I only had phone results at the time that I posted it, but I did get paper results that next week showing the PCR as 0.000. (They are in my folder that I can't find!!) My new doctor has copies of everything, so I may have to get all of them from her if I don't find my folder. She was shocked that I was PCRU that quickly too.

Anyway, I see what you are saying -- I was confusing MMR and CMR, but it does still seem that Sprycel works much quicker for some people than Gleevec (based on the MMR results). I couldn't find any CMR results data.

I will probably go ahead with the BMB, but not sure if it is necessary. I would rather err on the side of caution though and since my doctor feels I should do it, I will. She did say we will just do one and be done (assuming my results stay the same).

Interesting aside -- my new oncologist's husband (who happens to be my cardiologist) had CML a LONG time ago (during the 1980's maybe?? He is in his 60's now) and had my 1st oncologist as his doctor!! My cardiologist was sent to Seattle to get a BMT (he said it was the only place to go back then) and his donor was from England. Obviously, things went well for him and are still going well. (By the way, my 1st oncologist referred me to my cardiologist, who was his former CML patient, because I had a short P-R interval on my baseline EKG and subsequent ones. It is only a little short and hasn't changed, so I don't have to see my cardiologist anymore.)