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14 years since diagnosed. 11+ years on Gleevec. Low RBC now

Gleevec low rbc low platelets

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#1 Rakesh

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Posted 18 November 2014 - 03:00 PM

Attached File  CML_Gleevec_CBC_Results.zip   8.28KB   8 downloads

 

Hello Everyone,

 

This is going to be a bit lengthy post. Please bear with me.

 

My Father-in-law (60 yr old) was diagnosed CML in 2000. Gleevec was not available for him for first 3 years. He started Gleevec in 2003 and has been on 400 mg (200 mg twice a day. He is comfortable like that) all this while. Had to go up to 600 mg very few times and that too for a short periods. He even took many short breaks during his 11+ years of Gleevec.

All of a sudden, he started with mild cough which turned severe in a week. Started feeling very anemic and shortness of breath and CBC revealed following results

 

WBC 39.5
RBC 1.67
Hgb 4.5
PLT 29
 

The low RBC explains cough, anemia and shortness of breath.

He is admitted to ER and 4 units of blood was transfused. During this chaos, one potion of Gleevec was missed and he took only 200 mg that day.

After that, CBC showed below results

 

 
WBC 45.3
RBC 3.1
Hgb 8.8
Plt Count 29,000
Band Neutrophils 11%
Lymphocytes 5%
Monocytes 2%
Eosinophils 12%
Basophils 2%
Metamyelocytes 3%
Myelocytes 2%
Blast Cells 26%

 

Onc said it seems to be in accelerated stage and Gleevec might not be working for him anymore. He asked us to switch to Sprycel. We said it would take 6-7 days for us to procure Sprycel (there are reasons for this. Its altogether a different topic. Will tell if anyone is interested). Onc was OK with that and meanwhile he increased Gleevec to 600mg.

CBC is being done everyday since then and all blood counts (WBC, RBC, Hgb, PLT) are dropping consistently. Here is a snapshot.

 

Note - On second CBC counts column below, RBC and Hgb went up because another unit of blood was transfused. After that there was a steady decline

 

WBC                          36.1 -- 34.6 -- 31  -- 28.5 -- 27.4
RBC                           2.89 -- 3.21 -- 3.1 -- 3.02 -- 2.81
Hgb                            8.1   -- 9.2   -- 9    -- 8.6   -- 8
Plt Count                    22    -- 16    -- 20  -- 16    -- 11
Band Neutrophils       8%   --  8%  --  6% --
Lymphocytes             13% -- 12%  -- 13% --
Monocytes                 9%   -- 4%    -- 9%  --
Eosinophils                4%   -- 7%     -- 7%  --
Basophils                   3%   -- 8%     -- 2%  -- 1%
Metamyelocytes         5%   -- 8%     -- 6%  --
Myelocytes                 7%   -- 16%    -- 7%  --
Blast Cells                  5%    -- 2%     -- 2%   -- 3%
 
He is getting one more unit of blood now. But I am sure its not going to hold up unless there is a change in plan.

 

My questions :

1) Does all these CBCs suggest if the disease has progressed to Accelerated phase ?

2) Why is RBC (inherently Hgb) and PLT dropping everyday ?

3) Is the increase in Gleevec from 400 to 600 cause for this low numbers ? Or it would have happened anyway ?

4) Does decreasing Gleevec dosage to 400 or even 300 will help ? Or is it better to stop it until the numbers reach low normal ?

5) Does switching to Sprycel help ? Onc says start Sprycel 100 mg. Isn't it too high a dosage considering his blood counts ?

6) If at all he has to switch to Sprycel and just in case it doesn't work, can he go back to good old  Gleevec ?

 

Onc has ordered for chromosome and mutation tests. Will get the results in a couple of days.

7) Is it good to wait on Sprycel until these test results come ?

 

I have attached a spreadsheet inside the zip file with all the above numbers with dates and events/actions.

 

This forum has been a great source of quality information. I am sure I will be advised the right thing

 

Thanks,

Rakesh



#2 leejoshuajohn

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Posted 19 November 2014 - 12:57 AM

Hi, 

 

    So sorry to read this. I am sure this is terrifying for all involved. A bone marrow biopsy needs to be done before ANYTHING is known. From looking at his labs, it looks like his disease has transformed to accelerated or blast crisis phase. That high percentage of blasts should never be in a CBC. IF his disease HAS transformed Sprycel may work, but ONLY as a bridge to get him to transplant. Once the disease has transformed it usually means that it has moved beyond BCR-ABL dependency and is usually using more complicated ways to survive. He needs to get back into chronic phase and he also needs to see a CML SPECIALIST. MD Anderson/Univ of Michigan/Sloan Kettering/Univ or Oregon/Univ of San Francisco. This is not a case for a small town hematologist if that is who he is seeing. GOOD LUCK and please be your own advocates here. Get him the best people you can afford. 



#3 Trey

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Posted 19 November 2014 - 10:49 AM

His leukemia is not under control and has progressed to at least accelerated phase.  When this happens urgent action is required.

 

You did not say what level of response he achieved with Gleevec, but the 400mg dose (assuming he took it daily) is not adequate any longer, and since you said he "had to go up to 600mg" at times I also assume the 400mg was not ever working that well for him.  But due to low blood counts he stayed at 400mg. 

 

The numbers you provided show that Gleevec still works to some degree if he takes enough of it since the WBC and blast count dropped after going to 600mg, but then his blood counts went very low.  I assume the PLT counts are really as low as you said (currently 11, and not actually 110).  The low PLT is the most troubling of the low counts I see, and the low HGB also shows severe anemia.  So it does not look like he should stay with Gleevec high dosage, since it is only marginally effective and also crashes his blood counts at higher dosage.  So a change in drugs is definitely required.

 

The Onc has done a Bone Marrow Biopsy (BMB) and kinase mutation test, which is what was needed.  Since you will have the information in a few days he could either start Sprycel now or stick with the Gleevec a few more days.  But it is imperative that he find a drug that will 1) control the leukemia, and 2) allow some level of useful blood counts (even if very low, which he can still live with).  The options depend somewhat on whether a kinase mutation is found, since various drugs work better against the different kinase mutations.  But overall Sprycel seems a reasonable choice assuming the cough was not due to some respiratory issue (Sprycel can cause fluid build-up around the lungs).

 

So starting Sprycel now would be a good idea if it could be obtained quickly, but waiting a few days (if it truly is only 3 or so days) and continuing Gleevec is also an option in his situation.  You said the Sprycel would take a while to obtain, but if the Onc can supply some Sprycel immediately then that would be preferred.

 

He also needs to understand if he has some lung issue beyond the leukemia, which can cause some level of coughing.  But if he has some other lung issue, then Sprycel might not be the best option and Tasigna might be preferred.

 

Let us know the results of the BMB and mutation test. 



#4 acb

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Posted 19 November 2014 - 01:53 PM

Are his blast cells at 26% as you put up above in your post or are they between 2 and 5% as you put further down in the post? Or did they drop that much that quickly? Regardless, he definitely needs a med change as Gleevec is not keeping the CML under control.

 

Trey, just trying to learn, which numbers indicate accelerated phase (besides blast cells)? I confess to not knowing what half those #s mean in relation to CML (band neutrophils, eosinophils, basophils, etc.) The only "phil" I know is PhilB and his squirrel friend.

 

Thanks!



#5 Rakesh

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Posted 19 November 2014 - 02:00 PM

Thank you leejoshuajohn and Trey for your time and advice.

We are able to get Sprycel and he is starting it from today - 100 mg. Hope he responds well as we are still waiting on Mutation results

And we had his chest X-ray done. There were no problems. His coughing has stopped upto 95% after transfusion and Azithromycin

 

I missed to provide blast count in first CBC result, which is before transfusing blood and making any changes to Gleevec dosage. Here it is.

WBC 39.5
RBC 1.67
Hgb 4.5
PLT 29
Blast 9%
So blast count rapidly increased from 9% to 26% in one day during which 4 units of blood was transfused and he took Gleevec 200 mg as opposed to his regular 400 mg. Not sure how relevant are these to that sharp increase. Also, I read somewhere that blast count will rise if blood counts are severely low, as the body wants to generate more cells to increase the numbers. Please throw some light on this.
 
Meanwhile, we consulted another oncologist for second opinion and he suspects its a blast crisis. He said the blast crisis is either lymphoid blast crisis or myeloid blast crisis. We will know only after 'Bone Marrow ASP Cytology'. Is this test same as BMB or something different ?
He said Sprycel will work if it is lymphoid blast crisis only. Otherwise, we will have to choose another drug. Please explain if you know any related information and what the other drug is for Myeloid blast crisis
 
Thanks,
Rakesh
 
 

 

 



#6 Rakesh

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Posted 19 November 2014 - 02:05 PM

Are his blast cells at 26% as you put up above in your post or are they between 2 and 5% as you put further down in the post? Or did they drop that much that quickly? Regardless, he definitely needs a med change as Gleevec is not keeping the CML under control.

 

Trey, just trying to learn, which numbers indicate accelerated phase (besides blast cells)? I confess to not knowing what half those #s mean in relation to CML (band neutrophils, eosinophils, basophils, etc.) The only "phil" I know is PhilB and his squirrel friend.

 

Thanks!

 

 

Hi abc,

 

Day 1 CBC - Blast cells were 9% with 400 mg gleevec regularly

Day 2 CBC - 26% with 200 mg Gleevec the night before

Day 3,4,5 CBC - 5%, 2%,2% respectively with 600 mg Gleevec 

Day 6 CBC - 1% with 300 mg Gleevec (this is because he is switching to Sprycel from following day and doc asked to stop Gleevec immediately)

 

Based on these numbers, I guess the 26% spike was because of severely low blood counts. Would love some experts' thoughts on this



#7 Trey

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Posted 19 November 2014 - 10:53 PM

His blood counts were so low that any percentages would be misleading.  I would only deal with absolute numbers, not percentages. 

 

It is true that the blood is trying to manufacture new cells quickly, so the marrow is throwing immature cells (blasts) out into the blood before they are ready because there is nothing else to send out.  So blast count under these conditions is somewhat misleading.  But blast cells in the blood is not a good sign.  He is not doing well at this point. 

 

I do not know why the second Onc would say Sprycel only works for lymphoid blast crisis.  That is not true.  But no drug works very well for either lymphoid or myeloid blast crisis. 

 

The "Bone Marrow ASP Cytology" is part of the BMB.  ASP means aspirate, which is the marrow fluid.  Cytology means they look at the cells under a microscope to determine abnormalities, including the leukemic Philadelphia Chromosome.

 

The combination of very low blood counts and progressing leukemia is not a good scenario for fighting this.  The TKI drugs do not work as well after the disease progresses.  But sometimes they will work, so we all hope he shows improvement now that he is taking Sprycel.







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