The Leukemia & Lymphoma Society - Fighting Blood Cancers
77 Replies Latest reply: Oct 18, 2011 3:08 PM by random RSS

Questions about CML progressing to ALL

CallMeLucky Registered Users
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I've heard a couple of cases recently where people talked about their CML progressing into ALL and I had some questions.

 

1) I had heard that CML Blast crisis is basically AML.  Is this true? How does ALL differ from blast crisis; why is it not considered CML blast crisis but rather a progression to ALL?

2) What is the difference between CML and PH+ ALL?  Is it really possible to have CML and progress to ALL or is it a case of the patient had PH+ ALL all along, but they were diagnosed with CML?

3) In cases where PH+ ALL is misdiagnosed as CML, what are the underlying reasons for the misdiagnosis?  Is it a mistake by the doctor, or is it that PH+ ALL cannot be trully detected early on and it just looks like CML?

4) Is there any way for someone who has been diagnosed with "typical" CML to determine if they are really PH+ ALL?  Are there things to look for in BMB or PCR?

 

 

Thanks for responses.

  • Re: Questions about CML progressing to ALL
    Tedsey Registered Users
    Currently Being Moderated

    Wow!  You must have read my mind or something.  I was just thinking about all this yesterday.  Thanks for posting it.  The little that I know, there are some markers in the cytogenics that determine what kind of ALL a person has (even if they were previously dx with CML) and if it will be responsive to chemotherapy or not.

  • Re: Questions about CML progressing to ALL
    Trey Registered Users
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    First, re-read these postings for basic info:

    http://community.lls.org/message/37922#37922

    http://community.lls.org/thread/3349?tstart=0

     

    Q&A:

    1) I had heard that CML Blast crisis is basically AML.  Is this true?  How does ALL differ from blast crisis; why is it not considered CML  blast crisis but rather a progression to ALL?

     

    CML is a disease of the white blood cells, of which there are two types, myeloid (neutrophils, etc) and lymphoid (T-Cells, etc).  CML starts very high in the blood stem cell hierarchy, so it affects both myeloid and lymphoid lines of white blood cells.  It also affects the red blood cells and platelets, but since neither have a nucleus, they are not truly leukemic cells.  So the WBCs are the leukemic cells, predominantly myeloid, but also lymphoid under "normal" circumstances; and so CML is mainly a myeloid WBC disease, even though lymphoid WBCs are also leukemic to a lesser degree.  When CML accelerates and morphs into Blast Phase, it undergoes additional genetic changes that give it survival advantages over TKI drugs, and these changes normally occur in the myeloid line of WBCs, but can sometimes occur in the lymphoid line of WBCs.  So, is CML Blast Phase just AML?  No.  It can be either myeloid (AML is myeloid) or lymphoid (ALL is lymphoid).  But the CML is still CML, but looks like either AML or ALL in Blast Phase, depending on which WBC line gets out of control first.  So it is probably more that the CML can look like AML or ALL in Blast Phase, rather than being AML or ALL.  But that is a technical point, since the treatment is the same (BMT).  So the "progression" to AML or ALL is open to debate among researchers, but there are reasons why it is less of a "progression" and more of a "looks & acts like".  In a nutshell, the issue is mainly secondary translocations.  So it is truly "CML Blast Phase (or Crisis)".

     

    2) What is the  difference between CML and PH+ ALL?  Is it really possible to have CML  and progress to ALL or is it a case of the patient had PH+ ALL all  along, but they were diagnosed with CML?

     

    Since CML has both leukemic myeloid and leukemic lymphoid WBCs, but is predominately leukemic myeloid, the diagnosis can rarely be more difficult.  ALL is a disease of the lymphoid WBCs, but most cases of ALL do not have the Philadelphia Chromosome translocation, so that rules out most cases.  So we are only discussing about 20% of ALL cases where there is also the Philadelphia Chromosome.  But proper diagnosis is still possible by a skilled Onc (but they are rare -- hence the problem).  So the person can rarely (emphasize rarely) be misdiagnosed as CML when they have Ph+ ALL.  But a question is whether Ph+ ALL isn't really just CML where the lymphoid line has already gained an advantage, but that is not clear.  Ph+ ALL is normally identified by a large percentage of the e1a2 version of the Philadelphia Chromosome.  But be careful --  most cases of low level e1a2 are NOT Ph+ ALL (Tedsey -- this is NOT your "AH-HA Moment").  But let me hasten to say that the treatment for CML and Ph+ ALL are the same -- TKI drugs.  But it would be better to go straight to Sprycel if Ph+ ALL is the diagnosis.  So if someone has a doubt about it, talk to your Onc about Sprycel.

     

    3) In cases where PH+ ALL  is misdiagnosed as CML, what are the underlying reasons for the  misdiagnosis?  Is it a mistake by the doctor, or is it that PH+ ALL  cannot be trully detected early on and it just looks like CML?

     

    The e1a2 is an indicator, but the key lies in properly testing (flow cytometry) to take a look at the lineages of the WBCs.  In Ph+ ALL, the lymphoid lineage will predominate over the myeloid.  Also, the simple WBC can show basic levels of myeloid vs lymphoid WBCs to provide clues.  In CML, the myeloid WBC line should predominate.

     

    4)  Is there any way for someone who has been diagnosed with "typical" CML  to determine if they are really PH+ ALL?  Are there things to look for  in BMB or PCR?

     

    If the PCR shows e1a2 at a relatively high level, then further investigation is required since Ph+ ALL is more likely.  If CBC WBC differentials (percentages) shows relatively high levels of lymphoid line at diagnosis (careful -- the percentage levels can fluctuate after starting TKI drugs).  BMB might show secondary chromosome mutations.  Flow cytometry (not often done at diagnosis) provides more details and is the best indicator.

     

    Let me emphasize that we are discussing this as an academic exercise (at least I am).  This is extremely rare.  CML TKI drugs are the treatment for Ph+ ALL just like CML, but Sprycel is preferred.  But if something changes for the Ph+ ALL patient, they should have a backup plan in place for BMT (at least HLA testing of siblings) because the TKI drugs are not as effective against Ph+ ALL as they are for CML.  But the key is try TKI drug therapy first.  So this issue should NOT be a source of concern for 99.9% of those with CML.

    • Re: Questions about CML progressing to ALL
      CallMeLucky Registered Users
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      I really appreciate you taking the time to respond and explaining it so well.

       

       

      Thanks Trey

      • Re: Questions about CML progressing to ALL
        Tedsey Registered Users
        Currently Being Moderated

        Thanks for your response and the insert about me.  How could you have ever figured I would start thinking I really have ALL?!?!?   Well, good thing I am now on Sprycel.  Always wondered why the e1a2 didn't show up until 6 months after dx.  However, to ease my soul, I will chalk it up to the inferior sensitivity of the last lab's machine (1:10,000), whatever kind of machine it was.  But it claimed it looked for e1a2 and I always came out undetectable.  Nevertheless, in my last BMB it looked like the myeloids were ahead.  e1a2 was undetectable in my last peripheral PCR.  So, still a CMLer.

         

        BTW, I don't know why it has taken me so long to get an answer.  And Trey, you probably have known this all along, but my onc said one cannot compare PCR numbers from the BMB aspirate and those from the peripheral blood.  They are two different trends.  That is probably a big duh, but it is something new I learned.  LabCorp always graphs all my PCRs and BMBs on the same line (thus, my confusion).  I have to keep track of the dates to know which number is from the aspirate and peripheral.  So, their graph is basically invalid.  I'll have to get a hold of Marnie's software.    

        • Re: Questions about CML progressing to ALL
          Trey Registered Users
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          A PCR could be done on the exact same vial of blood twice in a row and get different results.  So a vial from your marrow and a vial from blood done on the same day will always be different, if only slightly but possibly up to .5 log different, just due to estimation process errors inherent in the PCR process.  That is why I have such a problem with PCRs reporting down to 0.XXXXX when they are not that accurate.  And (mounting soapbox...OK...on top of soapbox now) people who say that most completely non-leukemic folks walking around also have detectable BCR-ABL by PCR don't know what they are talking about.

    • Re: Questions about CML progressing to ALL
      Shalom Registered Users
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      I just was told by my Dr. that my CML ir turning to ALL, I am really scared now, does that ALL is curable or I am going to die?

       

      Thanks Trey 

      • Re: Questions about CML progressing to ALL
        Taylor Registered Users
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        If it really is progressing to ALL, and if it's verified that it is ALL with the Philadelphia chromosome, Trey speaks above about that you will still be treated with the TKI drugs.  Sprycel should be your best bet though.

        • Re: Questions about CML progressing to ALL
          Shalom Registered Users
          Currently Being Moderated

          Thank you the thing is that my Dr. told me that and he say it will take days to put everything together that this is preliminary and tomorrow he will let me know whats going on, but for sure he told me CML is turning to ALL. I don't kow I am just scared very scared.

          • Re: Questions about CML progressing to ALL
            JoshLee Registered Users
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            Vit G,

             

                 Just wanting to say that I will say a prayer for you and I hope this all turns out good. We're all here for you if you need us. Stay strong. -Josh

          • Re: Questions about CML progressing to ALL
            Susan61 Registered Users
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            HI:  Are you sure he did not say AML?  Whatever he thinks he sees, I will pray for you too.  Please let us know how your results come out, and just keep in mind that they have such great treatments now for all these cancers that did not exist 15 years ago.  You did not mention or I missed it as to what he saw.

            Was it something in your blood work?

                 There are mistakes in testing everyday, therefore, do not look for anything bad until you get some final results back.

            God Bless

            Susan

            • Re: Questions about CML progressing to ALL
              Shalom Registered Users
              Currently Being Moderated

              Hi Susan,

               

              He mentioned to me Acute and I was for sure it was AML but then he said that the specialist in this cases told him that it was the good Acute the ALL so I was like what do you mean with good, I hate when they say that even if is CML is not good at all still Cancer, so he told me that the one they thing is ALL, anyway only god knows and he will decide what he is going to do with me, diagnostics are only numbers and formulas, but at the end we can't add 1 more second to our lives anyway god has our day for all of us. I have faith and I know that god will bless me soon.

               

              He did a BMB

               

              Thank you

              • Re: Questions about CML progressing to ALL
                Susan61 Registered Users
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                Hi:  I think he was trying to tell you that it is treatable.  I see you have a Faith in God, and thats the best medicine you can get.  God is the greatest Physician of them all, so wait and see what the results actually show.

                Susan

              • Re: Questions about CML progressing to ALL
                Tedsey Registered Users
                Currently Being Moderated

                Dear VG,

                 

                I am so sorry you are going through all of this.  I truly feel for you.  And I am here for you too.  And I couldn't agree with you more about the "good" cancer comment.  What an idiotic (not holding back here) thing for an onc to say!  A good kind of leukemia?????  The last time I checked, there wasn't one.  The majority have the potential to be deadly and they all promise pain and suffering.  Is there a good diabetes or a good ALS?  As much as I do not wish this disease or any other form of leukemia on anyone, I would love for that "specialist" to hear exactly what he said to you when being diagnosed for leukemia himself (acute or chronic).  Gee whiz!  Clearly he doesn't have any "special" human quality in delivering bad news, despite the "specialist" title. He is definitely a specialist in being unempathetic and insensitive.  Did he say this with a smile on his face?  It reminds me of my last onc who literally told me, (smiling, that is), that she wouldn't try any other drug but G with me and she was going to give me a SCT at 10 years because I would still be young.  What a nutcase!  I just have no tolerance for this.  I don't care if he/she is the best oncologist in the world.  It would impair my healing if I had to deal with him through my entire recovery.  You need sensitive, supportive and kind people in your life right now.  Toss those away who are not.

                 

                My best wishes and prayers are with you,

                 

                Tedsey 

                • Re: Questions about CML progressing to ALL
                  Shalom Registered Users
                  Currently Being Moderated

                  Tedsey,

                   

                  Thanks a lot for you words I am really tired of all this medical terms like, PH+, T-Cell, B-Cell, ABL and at the end is all Cancer.

                   

                  This was my last BMB

                   

                  Peripheral Blood:

                  - Pancitopenia with rare circulating blast identified

                   

                  Bone Marrow Aspirate Smears, Trephine and clot biopsy:

                  - Precursor B Lymphoblastic Leukemia (B-ALL)

                   

                  Comment :

                   

                  - The patien has a history of CML. The current findings are compatible with a blast crissis of CML. Approximately 70% blast are identified by manula count. By Flow cytometry, the blast express CD34, bright CD10, HLA-DR, CD38, CD19 (a subset) , and dim CD20 (minority)

                   

                   

                  No PH+ and everything change in one month that means everything can change in this life god is the only one who knows now I am not CML anymore

                   

                  THank you all for your support

                  • Re: Questions about CML progressing to ALL
                    Trey Registered Users
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                    A few questions:

                    1) Was this the original BMB done at the time of diagnosis you are reporting or one done recently?  Were there 70% blasts in your marrow at diagnosis or now (or both)?

                    2) Was this the City of Hope Onc or the original Onc?

                    3) Your recent PCR showed good progress.  However if you really have Ph+ ALL then it can respond to TKI drug therapy, often for only a year or so, but sometimes for the longer term.  I would not assume it is actually Ph+ ALL unless the City of Hope Onc agrees.  Your original Onc is not very well informed.

                    • Re: Questions about CML progressing to ALL
                      Shalom Registered Users
                      Currently Being Moderated

                      Trey,

                       

                      This was last Thursday BMB  the 70% was in my BMB, my original Onc did this BMB the City of Hope still asking my other Onc. for that slices of the BMB I probably will take them tomorrwo or Thursday. But for sure I will get second opinion.

                       

                      Trey, what are the chances of not be PH+ALL and what are the chances of having B-ALL?

                       

                       

                      This is killing me times goes really slow and I haven't got any answer from my regular Onc. yet I need to know the last results, I know that this is preliminary but thats the results B-ALL so I don't know how is going to be everything since now on. I don't have any idea of Chemos, those that chemos going to end killing me or whats next

                       

                      Thank you Trey

                      • Re: Questions about CML progressing to ALL
                        Trey Registered Users
                        Currently Being Moderated

                        Ph+ ALL leukemia has sub-types, and B-Cell is one of them, so they are discussing Ph+ ALL with B-Cell predominance.  And I assume your original diagnosis BMB showed the Philadelphia Chromosome, otherwise they should not be giving you Gleevec.

                         

                        There is an issue that is poorly understood among Oncs.  You have been having severe low blood counts.  Therefore your body struggles to make new cells, and they often can come in waves.  Blood is made in cycles, not at a steady pace.  With very low counts, if the body is trying hard to overcome the low white blood cell counts, then a large group of blasts will show up all at once.  And if you have a large group of blasts and compare them by percentage to the very low numbers of existing WBCs, the percentage will be high.  This can be mistaken as a bad sign, when it the body trying hard to fix a problem.  I don't know what is going on with your situation.  But ask the City of Hope Onc about this issue I am discussing.  Your regular Onc is not a very good source of info.

                         

                        Here is some more info about Ph+ ALL:

                         

                        http://asheducationbook.hematologylibrary.org/cgi/content/full/2009/1/371

                        • Re: Questions about CML progressing to ALL
                          Shalom Registered Users
                          Currently Being Moderated

                          Trey,

                           

                          Even if my diagnosis is worst I will always thank you for all you do for us, I hope everything could change but now is clear that B-ALL is what they found, tomorrow I will go to City of Hope and I will get another BMB and a second opinion because I don't trust about those results that I just got, so I will give it a try in City of Hope anyway. and probably I will let them to treat me there.

                           

                          Thanks Trey

      • Re: Questions about CML progressing to ALL
        CallMeLucky Registered Users
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        I don't know that much about this, but I do know that advanced CML or CML that transforms to AML or ALL is a serious and tricky thing.  That being said, you should ensure you are working with doctors who are qualified to treat such cases.  You are out of the "general hematology/oncology" area, you need to be seeing a specialist who knows how to deal with this, preferably at a large cancer center.

         

        Do you know if your doctor specializes in this area?  Do you have access to a specialist?  Where are you being treated?

      • Re: Questions about CML progressing to ALL
        Happycat Registered Users
        Currently Being Moderated

        Vit G,

         

        Sorry I'm so late to post.  Been involved in an ISO audit all week, just haven't had the time.  However, I've been reading and following your posts.  I'll be praying for you, and praying that the docs at City of Hope will know what to do to provide you with the very best care possible.  Please remember that even in your darkest hours, the Lord is with you.

         

        (((Warm hugs))), you'll get through this.

         

         

        Traci

        • Re: Questions about CML progressing to ALL
          Shalom Registered Users
          Currently Being Moderated

          Thank you my friend I am really comfused about what happend everything was so fast, anyway I havent get any results back from my las BMB, the only thing is that my Dr. Order Sprycel I don't know what is the plan yet.

  • Re: Questions about CML progressing to ALL
    tranier Registered Users
    Currently Being Moderated

    Hi!  I would like to encourage you to seek out a CML specialist if one is available nearby...My 21 (on Oct. 8) year old son CML dx 12/09 went into Blast Crisis this summer and is slated for MUD transplant on Oct 24th...Although blast crisis CML presents like AML the Philadelphia chromosme as Trey suggests is a very important part of treatment options....BJ's case very rare (the Cleve Clinic) hasn't seen one like his in over ten years...even the world-renowned AML specialist that met with us during Induction said that CML  patients are best served by those who have studied it specifically....Best of luck and prayers!

    • Re: Questions about CML progressing to ALL
      Shalom Registered Users
      Currently Being Moderated

      Thank you  trainer,

       

      I was told again today for my Onc. that 80% he is sure I have ALL, the only thing is that he don't know yet if is PH+ALL or only ALL that is weird because when I was diagnosed with CML PH+ was present, so he don't know yet he told me that they are checking the genes and all that stuff, I am taking the BMB Slides to my Onc. in City of Hope she is a specialist and there is more specialist also.

      All depends on what they say there and I will be getting my first treatment soon. How is your  son doing? how the Chemos are? how long it takes to finish this treatment? I hope your son is fine.

       

      Thank you

  • Re: Questions about CML progressing to ALL
    tranier Registered Users
    Currently Being Moderated

    Trey's explanation a couple of posts earlier is very important, so reread before going to specialist...again ask if they have a CML specialist at City....

    While I do not have the years of research Trey has, I can only share BJ's two year experience and the research I have done (I hav e my doctorate,and teach part time at a University, in addition to teaching Elementary...so I have spent a lot of time with scholarly medical research and asking specialists A LOT of questions....

     

    Again, 99.9 percent of CML patients will not have the same experience you or BJ has...but here is what I have learned...

     

    Yes, CML blast crisis usually leads to SCT..BJ's is on Oct. 24, HOWEVER the Philadelphia Chromosome does not just disappear as Trey indicates...Because of this while all SCT hopefully have same outcome....patients with CML have a different CHEMO -Pretransplant protocal the week before the actual transplant than AML or ALL or any of the other leukies have...that is why we when we consulted with a top notch AML expert (because CML blast presents as AML or ALL - IT IS NOT!!!)  He advised us to stay with a CML specialist who is also a BMT Transplant Doc...

     

     

    After BJ's month of Induction chemos which brought him back to remission/chronic state he has remained on Sprycel...Two week ago BMB showed a clean marrow...BUT he can't stay on Sprycel for long (140 mg currently -a high dose) because once you enter blast crisis a SCT is (usually) choice for long term survival and he is just turning 21...I caution BJ had perfect (after first year response to Gleevec...again a very rare case....otherwise he would have earlier been switched to a dif TKI (we have been with CML specialist since beginning)

     

    Again, there are soooo many protocals out there right now and while none of us are "lucky" at all...at least we have so many more options than ever before!!!  I will keep you in my prayers....

     

    Just be sure to find out who you will be seeing at City for consult...if possible call now and ask making sure that you will VERY SOON get to a CML specialist..The ALL specialist who did rounds during BJ's induction also stressed to us how important it was in his case to be with someone who knows CML and all of its possible "morphs..."  AML and ALL are much more specifically identified as to which subtype but CML is its very own unique   disease and a CML doc is your best choice,....

    • Re: Questions about CML progressing to ALL
      Shalom Registered Users
      Currently Being Moderated

      Thank you Trainer for your advice,

       

      I am 35 years old and I was on Gleevec for 7 months the first 6 months all my counts were fine except for platelets they were always low or ok but always in the limit, then in the 7 month I got an infection in my throat and since then everything was down and down, my dr. tought if was the same gleevec but then he decide to do a BMB and this was my last diagnosis ALL, I really scare and for sure I will get a CML specialist today, they will check everything and if it is necesary they will perform another BMB again. Thats very weird what happend to me and your son too but what we can do, now is only the next step that is probably the SCT and hopefully give us more years to live.

       

       

      Thank you

      • Re: Questions about CML progressing to ALL
        Trey Registered Users
        Currently Being Moderated

        If you had a BMB during a period of infection, no wonder your body was making a lot of new cells, including blasts.  I do not have all the info, but if it were me, I would not trust the blast phase diagnosis until it is confirmed by the second BMB.  I would also NOT let anyone put any chemotherapy into me until after the confirmation.  Chemo will just "piss off" the leukemia and could cause it to morph unless you follow the regimen through to a BMT.  So again, if it were me, I would not trust any information until it is verified by the second BMB.  You may be in blast phase, but maybe you are not.  It is possible that it was just your body responding to the infection, and the percentages look odd because you had low WBC.  With a low WBC, the percentages cannot be trusted because they can be distorted by any small changes such as a sudden spike in WBC production.

        • Re: Questions about CML progressing to ALL
          Shalom Registered Users
          Currently Being Moderated

          Trey,

           

          I talked to my Onc. the one in city of hope I gave her  the resume of my BMB from my other Dr. and she was so sure that CML progress to  ALL that she told me the protocol to follow and I told her that you Trey a  Dr. in LLS told me that CML blast crisis could make looks like AML or ALL, and I told her that in that BMB they didn't find the PH+ and the BCR-ABL and where are those now, she send me anyway to get my room for induction and when I was waiting in for my room they call me again and they did a BMB, now I am in my room at City of Hope but my Dr. told the nurse that she will wait for the BMB results and not to start with chemo. If it wasn't for you all the explanation you gave it to me I should be doing Chemo right now so now they will wait for results. It could be CML blast crisis and I will need chemo and BMT, but at least they will doble check everything again. Trey I will let you know whats going on with everything anyway if I am ALL,PH+ALL or CML blast Crisis I will need Chemo and BMT.

           

           

          We keep in touch.

           

          Thanks again

          • Re: Questions about CML progressing to ALL
            Pin Registered Users
            Currently Being Moderated

            Vitamin G, goodness, I really hope that it isn't - I'm glad that you are getting things checked out properly though. It stuns me to think that they may not always do this...I do hope that you get some good news back, but if not, we will be here for you with whatever we can do to help xxx Pin.

            • Re: Questions about CML progressing to ALL
              Shalom Registered Users
              Currently Being Moderated

              Thank you XXX pin, I am glad they will double check everything, I hope to get a miracle tomorrow, I know how I have faith in God and maybe is the day he will give me the best outcome, anyway I am ready for everything, I know that there is nothing I can do so i am here and what they found tomorrow I will probably doing chemo same day, so it is very weird but at the end is only Gods Will. I am very positive and I am in God hands. Like I said in a differnt post we can not add a second to or life so if this is my destiny what can I do.

               

               

              Thank you my friend.

              • Re: Questions about CML progressing to ALL
                Susan61 Registered Users
                Currently Being Moderated

                HI:  I will pray for that miracle along with you tonight.  Your faith will get you through it all, no matter what the results are.  The main thing is for them to find out exactly what is going on for sure. Did you see the posting from quiltdiva51 earlier today.  She said she does not post very often, but she was just diagnosed with ALL along with CML Blast.  She is so positive in her attitude, and is getting ready for all the prep for a BMT.  She also has a great Faith.

                I think it would be good if the two of you could correspond to help each other through all of this.  I was so surprised to read her post after yours.

                Have a Good Night.  Its all in God's hands.

                Susan

        • Re: Questions about CML progressing to ALL
          Shalom Registered Users
          Currently Being Moderated

          Trey,

           

          What do you think is the plan here at City of Hope, they haven't gave me any diagnostic but Dr. orden for me Sprycel? I just took it.

          • Re: Questions about CML progressing to ALL
            Trey Registered Users
            Currently Being Moderated

            Switching to Sprycel is a reasonable decision since the Onc is trying to determine your response status.  I would think that the City of Hope will wait to see the BMB results and then decide on a treatment plan.  That is what they should do, in my opinion.

             

            If there is a real problem the BMB should show three things: 1) the Ph+ chromosome, 2) high blast count, and 3) your WBC would be high again.

             

            I would not allow anyone to put chemotherapy into me without putting together a treatment plan and considering it carefully for at least a few days.

            • Re: Questions about CML progressing to ALL
              Shalom Registered Users
              Currently Being Moderated

              Thank you Trey,

               

              I know they know that because I told them, all you explained, everytime a dr. come in I told them everything and today thats when they order the Sprycel, anyway I feel like they are really looking every detail in this case. I told my Dr. you guys have a PCR that was done 2 or 3 weeks ago and there is PH+, and also shows that Gleevec was working. They told me that I was right and that they will put everything together before treatment.

               

               

              Thank you Trey for your help

            • Re: Questions about CML progressing to ALL
              Shalom Registered Users
              Currently Being Moderated

              Trey,

               

              I notice that my WBC still low 2.8 and they haven't go high, you are saying that if it is something wrong in the BMB, WBC wold be high again. I am comfused now, I tought that the blast crissis will no let this WBC show up because the BM is full of leukimia cells, I don't know exactly what I am saying but I thing I get this from one post long time ago here in the LLS website. Let me know how that works and why my WBC still low and not high.

               

              I am still here at the City of Hope and yesterday was my first Sprycel, do you know how is better to took this pill, food or no food, I know you are taking G but hopefully you have some info about this pill.

               

               

              Thank you Trey.

              • Re: Questions about CML progressing to ALL
                hannibellemo Registered Users
                Currently Being Moderated

                VG,

                 

                I'm so sorry you are going through such a worrisome and confusing time right now trying to get the correct diagnosis.

                 

                I have been on Sprycel for two years now and unlike Gleevec it doesn't matter whether you take it with food or not. I take mine in the morning with breakfast but it also doesn't matter what time of the day you take it.

                 

                It seems as though your low WBC is a good sign and that there is perhaps an error in testing somewhere along the way. Hopefully you will find out soon.

                 

                Good luck, I know we all have our fingers crossed for you and that you remain in chronic phase CML.

                 

                Pat

                • Re: Questions about CML progressing to ALL
                  Shalom Registered Users
                  Currently Being Moderated

                  Honestly there is only something I can say to you and all people here and the forum Thank you very much you guys are my family evern if I don't know any of you personally, thank you for your answer and I also praying to be only to remain CML only and not the blast.

                   

                  Thank you again.

                  • Re: Questions about CML progressing to ALL
                    billronm@roadrunner.com Registered Users
                    Currently Being Moderated

                    Dear VG,

                    I just want to let you know that I'll be praying for you.I have been following your situation and I know how wonderful and comforting all these people are. When you get scared just imagine a big group hug with about 1000 people. Many Many read this site they just don't post because most of them get thier answers just by reading it. I believe in miracles and the power of prayer we are all with you. You are definitly not alone.    God bless you Billie

                  • Re: Questions about CML progressing to ALL
                    simone4 Registered Users
                    Currently Being Moderated

                    Vitamin G, I come to the board all day checking on you. I hope you will write the

                    questions Trey asked you and ask those questions of the doctors. There was a

                    lab error made last year in my PCR and it indicated I might be ALL. However,

                    it was a mistake after the BMB  proved I was CML and there was no

                    progression. I was so scared like you until I found out the lab had made a

                    mistake. Please sleep as well as you can tonight and know we will be

                    here when you awake.  You are in all our hearts tonight.

                    Take care, my friend.

                    Simone

              • Re: Questions about CML progressing to ALL
                Trey Registered Users
                Currently Being Moderated

                Your Oncs need to answer the following questions:

                 

                1) If your leukemia has transformed into something aggressive, or has changed from CML to ALL, then why is your WBC so low?  If the leukemia is out of control, it is not showing up in the normal way, which would be a rapidly increasing WBC.  Your WBC is well below normal, so how does this show a blastic transformed leukemia?

                 

                2) If your BMB shows no Ph+ chromosome, and your PCRs are dropping, then how is the leukemia transformed into something aggressive?  If the blasts were leukemic cells, they would certainly show up in the BMB as leukemic cells.  (Maybe this BMB done a few days ago might show that, but the last one did not show it -- that is why this re-do BMB is important.)

                 

                3) If you had an infection during the BMB, wouldn't it be normal to see the body trying to fight that infection?  And wouldn't the body do that by making massive numbers of new WBCs?  And wouldn't that include a lot of blasts?  And could those blasts possibly be non-leukemic (i.e., normal) WBCs?

                 

                4) What would be the benefit to a patient to put chemotherapy into someone who has very low WBC, which is what they were about to do to you last week?  The purpose of chemo for leukemia is to get the huge numbers of leukemic cells killed off and lower the WBC to something closer to normal, although usually still high.  If someone already has a below normal WBC, then why the blazes would they try to put chemo into them?  Are they stupid or something???

                 

                Maybe you do have a problem that needs to be dealt with.  Maybe it is just starting.  I cannot tell you.  But maybe there is nothing wrong, and the Onc was about to fill you with chemo for no good reason.  I would proceed very cautiously if it were me.

                • Re: Questions about CML progressing to ALL
                  Shalom Registered Users
                  Currently Being Moderated

                  Trey,

                   

                  I don' t know how to thank you all the time you take to write here and support, thank you so much Trey, about those questions I just told my wife to print all the post you have been posting in the last days and I will comfront Drs on Monday for sure I will do it. Because now I will not let then just to put me chemo in my body, first they will have to answer me questions and ofcourse before that I was in paper all results and wath was their diagnostic. This time you really encorage me to do it Trey I am not afraid I learn a lot in the last month just for you and all the people here that coment all the time.

                   

                  Thank you Trey I will not let these peopel just to put me chemo for sure.

                • Re: Questions about CML progressing to ALL
                  Shalom Registered Users
                  Currently Being Moderated

                  Trey,

                   

                  Today WBC still 2.8 but also I am low in RBC, hemoglobin, platelets but yesterday was my second day in Sprycel I will let you guys know about tomorrow if they have an answer.

                   

                  Thank you 

                • Re: Questions about CML progressing to ALL
                  Shalom Registered Users
                  Currently Being Moderated

                  Trey,

                   

                  The doctors came in they still don't know the results of the  BMB, it seems to me that they still working on it, they asked me for the slides of the other Onc. BMB, I been 3 days in sprycel, my CBC keeps showing low numbers WBC 1.6, RBC 2.86, Hemoglobin 8.9, RDW 14.7, platelets 60, I don't know whats going on but no results yet. I asked all those questions you sent me and they were also surprise that you know all this, I told them you are a menber of the LLS community and you help us here with all the research you have done. Anyway they told me they don't know yet and they will let me know a diagnostic before put in the chemo.

                   

                   

                  Thanks Trey 

                  • Re: Questions about CML progressing to ALL
                    Trey Registered Users
                    Currently Being Moderated

                    With bloods counts as low as yours, no one should start you on chemo for any reason.  If you truly have ALL leukemia, then you need to first become committed to a BMT process and have a donor ready, but that usually takes months.  And there are other treatment options which we can discuss later if required.  With your low WBC, any small amount of chemo would wipe out your immune system to the point where you would be defenseless against any common virus or bacteria.  If it were me, I would not allow any chemo at this point for any reason.

                     

                    I seriously do not know what these docs are thinking, or thinking with, when they put chemo into a person with low WBC and then start looking for a BMT donor.  They look at the suggested treatment for ALL or AML leukemia and just start the chemo flowing.  They ignore the fact that the CML patient already has no immune system due to the TKI drugs.  That puts the patient in a very hazardous condition.

                     

                    If tests confirm a changing diagnosis, you would likely need a new treatment plan.  But again, if it were me, I would want to lay out a treatment plan and consider the options carefully before anyone did anything to me.

                    • Re: Questions about CML progressing to ALL
                      Shalom Registered Users
                      Currently Being Moderated

                      I told the Dr. that just a couple of minutes and he told me that because the leukemia thats why my blood counts to low, and that the only option is chemo, I ask him about the transplant and they told me that is too early to confirm that because they need to see how do I respond to the chemo. I told him that I wold like to see the results in paper and also a treatment plan on paper before they put chemo on me.

                       

                      He said that it shows CML blast crissis and shows also ALL I can't believe it but well what I am going to do anyway two BMB showing almost the same thing thats means it is something wrrong already.

                      Thank you Trey I will keep posting or asking you during this treatment

                       

                      Thank you 

                      • Re: Questions about CML progressing to ALL
                        Trey Registered Users
                        Currently Being Moderated

                        So your Onc said that your blood counts are low because of leukemia, and so you need chemo?

                         

                        The term "Leukemia" means "white blood" because the WBC gets so high that the blood has a white tone.  Opposite of what your Onc said.  Chemo is used to bring down very high WBC to a level closer to normal because a high WBC can be hazardous.  Opposite of what your Onc said.  Chemo would take your current 1.6 WBC down to 0 -- what would that accomplish except to put you in danger?  The chemo will not bring lasting results, so a BMT would need to follow it.  But there are other options that should be considered, and having chemo could eliminate your eligibility to participate in certain treatments.

                        • Re: Questions about CML progressing to ALL
                          mamawarrior Registered Users
                          Currently Being Moderated

                          I know nothing about cml but have been following the conversation out of curiousity. I do want to say that acute leukemias can present with high or low wbc's. My adult son had aml with a wbc of 174,000 when diagnosed the first time and a greater than 90% blasts. His marrow was packed and overflowing into the peripheral blood. He had to have leukopheresis to lower his white count before starting chemo. After chemo and a remission of 14 mos, he relapsed and his first signs were dropping counts. His wbc got down to 1.1 and the bmb confirmed relapse, he was started on chemo that very day. He was 60% blasts then, and based on experience, i believe within a week his marrow would have been so packed and overflowing that his wbc would have been much higher in the peripheral blood again. With the chemo his counts did drop to nearly 0, which is very common with aml treatment and nadir, very dangerous and very scary, then recovered before starting the second round. Chemo put him back in remission with that initial round. After 2 rounds of chemo (2 mos) , with recovery between, my son did go to transplant.

                           

                          So i am a little confused as to treys response to not getting chemo when you have a low wbc unless that is the way it is with cml. But in acute leukemias, it can present with a low count or a high count and is treated with chemotherapy. Once remission is gained there may be parameters such as a certain platelet count before initiating further rounds (depending on clinical trials  etc), but treatment is started with both high and low counts.

                           

                          I wish you the best in getting an accurate diagnosis and the proper treatment for you.  

                        • Re: Questions about CML progressing to ALL
                          Shalom Registered Users
                          Currently Being Moderated

                          Trey,

                           

                          This is the Diagnosis:

                           

                          Peripheral Blood;

                          -Pancytopenia with rare circulating blasts

                           

                          Bone marrow:

                          -Lymphoid Blastic crisis in CML extensively involving a hypercellular marrow.

                          -Markedly Decreased Triliage Hematopoiesis

                          - History of CML

                          -Immunologic Characterization by Flow Cytometry Bone Morrow Aspirat.

                          -A lymphoid Blastic Population expressing CD19, CD10 Cytoplasmic CD22,CD34. and TdT Detected.

                           

                          Flow Cytometry Surface Markers:

                           

                          Interpretation:

                          - The Flow Cytometry analysis was performed based on "blast" gate and emostrates a lymphid blastic population expressing CD19, CD10, cytoplasmic CD22, CD34 and TdT.

                           

                          Results -coments

                           

                          -Total Cell Yield 3x10-6 /1 cc.

                          - Viability Not given.

                           

                          Leukemia Panel:

                            - CD45, HLA-DR, CD33, CD34, CD17,CD15, CD7, CD8,CD4, CD3

                           

                          - Pre-B ALL Panel: CD45. CD34, CD13, CD19, CD10,CD20, cTdT. cCD22, CD38

                           

                          Wright Giemsa Stained Cytospin: Paucicellular.

                           

                          Molecular - t(9:22) 

                          • Re: Questions about CML progressing to ALL
                            Trey Registered Users
                            Currently Being Moderated

                            Some questions:

                             

                            1) Are you sure that it said "hypercellular marrow" as you report, or did it say "hypocellular"?  I ask because that does not correlate with the "Pancytopenia", "Markedly Decreased Triliage Hematopoiesis", and the "Paucicellular" Wright Giemsa Stained Cytospin, all of which mean you are not producing enough blood cells.  Hyper is too many, and hypo (and pauci, and penia) is not enough.  So which is it?

                             

                            2) It does not say what the blast count was.  Wasn't that the point of the blast crisis issue?  Need to know that.

                             

                            3) It does not say if the Philadelphia Chromosome t(9;22) was detected among 20 cells examined.  It just says there is a history of such.  The last BMB was negative.

                             

                            4) Are there + and - signs on the CD numbers?

                            • Re: Questions about CML progressing to ALL
                              Shalom Registered Users
                              Currently Being Moderated

                              It si Hypercelluar,  and for the CD numbers there was no (  - +  ) only like the way I put it to you.

                               

                              Trey I will try to get the compleate reports ans posted for You in PDF today.

                               

                              My firs chemo was last night and it wasn't that bad my WBC this morning 0.7 but very weird about other counts RBC 2.94, hemoglobin 8.7, hematocrit 25.8, RDW 14.7, Platelets 84.

                               

                              Today at night I will have my 2 chemo in an hour.

                               

                               

                              Thanks Trey I will keep you posted.

                               

                              Do you know whats my prognostic what are my chances for what they diagnostic to me?

                              • Re: Questions about CML progressing to ALL
                                Trey Registered Users
                                Currently Being Moderated

                                You have chosen a BMT at this point since you have started chemo.  You can read information about BMT:

                                 

                                http://community.lls.org/message/101600

                                • Re: Questions about CML progressing to ALL
                                  hannibellemo Registered Users
                                  Currently Being Moderated

                                  VG,

                                   

                                  Thinking about you and wishing you all successes on your transplant journey!

                                   

                                  Pat

                                • Re: Questions about CML progressing to ALL
                                  Shalom Registered Users
                                  Currently Being Moderated

                                  Do you think there was no more choice for me in this diagnostic?  I talked to the doctors before the chemo and they toldme that one time the blast crisis is present in CML that means they can stop only this lymphoid or Mieloid crisis with chemo, and after that maybe the pill could be used in this case sprycel but thats only question of time from 1 year or more but is going to relapse again,  so the best choise here is chemo and sprycel try to bring it to CML again and if there a good match for me then we go for sure for the BMT but if there is  no donor, we may stay with Sprycel and keep looking for a donor.

                                   

                                   

                                  what do you think about  this.

                                   

                                  Thanks Trey

                                  • Re: Questions about CML progressing to ALL
                                    Trey Registered Users
                                    Currently Being Moderated

                                    The choice has been made, so you go with it from here.

                                  • Re: Questions about CML progressing to ALL
                                    Happycat Registered Users
                                    Currently Being Moderated

                                    VG,

                                     

                                    You do what you gotta do.  You've got 3 kids, and I can totally understand your fear and motivations.  I've got a 10 yo and 8 yo twins, and I will do whatever it takes to be here for them.

                                     

                                    Your feet are set on this path now, so we'll pray for God to guide you and guide your medical team to the best possible solution.

                                     

                                    How are your wife and kids doing with all this?  Can the kids come and see you?  Is your wife holding up?  (Maybe you've been sprung from the hospital by now??)

                                     

                                     

                                    Keep the faith,

                                     

                                    Traci

                                    • Re: Questions about CML progressing to ALL
                                      Shalom Registered Users
                                      Currently Being Moderated

                                      Thanks my friend everything is fine so far, my wire is very strong and she has been here since I got here, my kids come like 2 days ago and we watch Little Fockers lol, and just doing chemo and all the protocol to follow, maybe next monday they will do a BMB to se how the Chemos are working for me. I am not afraid anymore I know that God will decide what to do with me and I am happy with that, God is the best medic and I will let that to him since now on.

                                       

                                      Thank you all

                                      • Re: Questions about CML progressing to ALL
                                        jjg Registered Users
                                        Currently Being Moderated

                                        Hi VG,

                                        I've been reading your posts everyday and hoping the best for you. Being not afraid is a special thing, something I hope to achieve one day. Of course it doesn't mean that you can't fight like hell and kick some cancer butt.

                                        It seems that you have a plan now with the chemo and protocol, having a plan is good. Have faith in the docs too, they are part of your journey.

                                        All the best to you and your family, hope you get some good news on Monday. Keep us posted.

                                        J

                                    • Re: Questions about CML progressing to ALL
                                      Shalom Registered Users
                                      Currently Being Moderated

                                      I finished the first round hyper Cvad, they send me home today I wasn't that bad or I don't know if the symptoms will come soon because thanks to God I didn't feel anything not even nauseas, only diarrea one morning but that was it. With the news running in all hospital that my Brother and Sister are compatible with me for the BMT, social workers and nurses keep telling me that this is a miracle, and some others play with me and they said who you will chose your sister or yor bro,  well we still don't knwo for sure who is more compatible yet sometimes all those test one came different and thats when they chose one.  Well I am just posting here because I am still CML thats why the doctors said, but ofcourse if they keep me in sprycel I will relapse again doctor said that maybe 8 moths to a year, that now that I have HLA family compatible then they recomend the BMT, there is a long process anyway I will keep you guys posted.

                                       

                                      God Bless you all

                                      • Re: Questions about CML progressing to ALL
                                        CallMeLucky Registered Users
                                        Currently Being Moderated

                                        G - Given your age and the fact you have good match related donor, you are going into this with very good odds.  Try to keep yor strength up and hang in there.  They say it is a tough road, but when all is said and done, there is a good chance you will go back to your life and this will be something you just remember as a difficult challenge you had to overcome.  You can do this and come out of it as a survivor!

                                         

                                        All the best......

                                        • Re: Questions about CML progressing to ALL
                                          Shalom Registered Users
                                          Currently Being Moderated

                                          Callmelucky,

                                           

                                          Thanks a lot for the positive comment, I really appreciate that you always try to help this way, most of the comments I have from you they are always positive.

                                           

                                           

                                          Thank youi

                                        • Re: Questions about CML progressing to ALL
                                          Shalom Registered Users
                                          Currently Being Moderated

                                          Guys just to let you know I am with the transplant team my syster is a good match and they told me that we will start in 3 weeks with all the process.

                                           

                                           

                                          I am nervous please pray for me guys.

                                          • Re: Questions about CML progressing to ALL
                                            simone4 Registered Users
                                            Currently Being Moderated

                                            Of course you are nervous. But please know that we are all here for you.

                                            You are so lucky to have a sister as a match. That helps your chances of

                                            a better outcome.

                                            Hope all goes well and thank you for keeping us updated.

                                            Blessings,

                                            Simone

                                            • Re: Questions about CML progressing to ALL
                                              CML_in_ATL Registered Users
                                              Currently Being Moderated

                                              You are absolutely in my thoughts and prayers!  To help inspire you, I met a gentleman over the weekend who received a BMT back in 2003 that saved his life, and he walked a 5K cancer fundraising road race here in Atlanta ... 8 years later, here he was able to walk 3.1 miles as a support of his life!  I was so inspired by his positive attitude and his fight.  You can do this .......

                                          • Re: Questions about CML progressing to ALL
                                            CallMeLucky Registered Users
                                            Currently Being Moderated

                                            Wishing you the best, but like I said before at your age with a sibling match, I am very hopeful and optimistic about your outcome.

                                             

                                            Hang in there and please let us know how you are doing from time to time.

                                            • Re: Questions about CML progressing to ALL
                                              random Registered Users
                                              Currently Being Moderated
                                              Question:
                                              My friend had 90% chromosome value on the bone marrow test he took about 6 months ago, while the leukocytes where on the normal values. He has been on 200mg Gleveec for 2 years.
                                              Now, on 400mg he has even less leukocytes but the chromosome is 7%.
                                              Should I be worried that he can be in the accelerated or blastic phase now?
                                              He has no symphtoms and he's feeling well.
                  • Re: Questions about CML progressing to ALL
                    CallMeLucky Registered Users
                    Currently Being Moderated

                    I don't know too much about this, and I don't want to put ideas in your head, but if it is PH+ ALL, you may want to explore if getting into the Ponatinib trial could help you.  From what I have read, they have had some success with treating people with PH+ ALL.

                     

                    http://www.marketwatch.com/story/ariad-announces-long-term-follow-up-of-patients-with-drug-resistant-cml-treated-with-ponatinib-in-phase-1-trial-2011-09-26

                     

                     

                    Best of luck

  • Re: Questions about CML progressing to ALL
    tranier Registered Users
    Currently Being Moderated

    Trey is so correct in encouraging you to know beyond a shadow of doubt that you are in Blast Crisis...make them prove it!  Infections can mask things and if a specialist is not calling the shots so to speak....hasty and WRONG decisions can be made....AGAIN a true CML specialist is in your best interest....Trey thanks for always encouraging everyone to get those second and even third opinions...we always have and that is the only way I know our family is able to really accept BMT as BJ's only alternative!

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