21 replies to this topic

[snowboots]

I have been doing well on Gleevec 400 since being diagnosed Feb. 2015 with a white blood cell count of 90,000. Last PCR in October was .03 with a log reduction of 3.597. My onc has been doing a basic CBC every six weeks. Everything has been within "normal" range for the past year or so. Just got results from last week's bloodwork that shows my white blood cell count has dropped to 3.4 from 5.3 in October, below their "normal" range of 4.0 - 11.0. Is this something I should be worrying about now or just wait until the next test? Is is possible the Gleevec is working overtime? Is it a good time to ask about reducing the dose? I still feel fine, but I'm a worrier!

[Melanie]

Snowboots, it's understandable that you're worried when you're WBC drop. You read about all kinds of warnings. It's likely that your TKI is working at killing all the leukemia WBC and it will take a while for your "healthy" stem cells to start producing the healthy WBC again. What is your ANC (abosolute neutrophil count)? It's one type of your WBC and is something to keep an eye on. If it goes too low, you need to take extra precautions and stay away from the public, sick people, and kids as much as you can. Wash your hands and santitize everything that you may touch in public. Try to eat healthy. The ANCs are your fighters against bacteria, so you may have to help them out a bit.
See what your next labs show...it's the trend that's important. Take care!

[snowboots]

Thanks Melanie for the additional information. My Neutrophil# went from 3.46 last time to 2 this time - still within "normal" limits. Neutrophil% is 57.2, up from last time and well within limits. Still learning what this all means.

[kat73]

I ditto Melanie.  I think they only get their shorts in a knot if the ANC is below 1.  But, even then, although you should always be prudent, you don't need to go around with a mask on or anything.  If it helps, ALL my counts (WBC, platelets, RBC, Hgb, Hct) have been low for 7 years now, since dx.  In the past few years they have climbed to sometimes be in the low normal range.  I was normal before getting CML, but since taking TKI's this has been my picture.  Melanie is right about it taking time for the new cells to be made, but for me I never really got all the way back. Changing to Sprycel from Gleevec helped, and then lowering the Sprycel dose helped more.  Anyway, bottom line is, my onc and my PC have never been alarmed at all, so I guess if you're not super low it is of no concern.  Of course, one wonders how 30 years or more of being low might affect one . . .

[Trey]

Sometimes this is a sign the leukemic WBCs are being pushed to very low levels.  If the WBC is boosted by leukemic cells in that count, do we consider that a good thing?  I think not.  So dropping below "normal" can be a good thing.

[shweflen]

I was diagnosed on 10/24/2016.  On 11/2 my white blood cell count was 72.5k.  I started on 400 mg/day Gleevec on 11/12.  By 11/28 my white blood cell count was 2.4k with neutrophils = 0.6k.  My hematologist told me to start splitting the pills and take 200 mg/day.  On 11/30 my wbc was still 2.4k and neutrophils were 0.8k.  I will have another blood test on 12/5  hoping to stabilize in normal range on 200 mg/day Gleevec.

[Melanie]

As Trey says a low WBC or neutrophils means the TKI is working and taking out the leukemia cells. Please don't be too alarmed, just cautious. I've been living with low counts basically since Dx in 2011. My new normal neutrophil count is 0.8 and I'm doing fine. In the beginning this was alarming for the Drs as Kat says, anything below 1.0 is a watch sign. The guidelines say to withhold the drug till it returns to normal, but I think now more Drs are taking a wait and see approach. Waiting until there's a definite trend or put you on an antibiotic as a precaution. The guideline for me now from my Drs are only concern when they're at 0.5 or below. Just be careful and by all means if you have a fever over 100, seek medical help.

[shweflen]

Thank you Melanie and Trey.  I am being careful and assume that the process will sort itself out in the coming months.  I'm glad to have a place to ask questions and express concerns.

[soundoff]

As Trey says a low WBC or neutrophils means the TKI is working and taking out the leukemia cells. Please don't be too alarmed, just cautious. I've been living with low counts basically since Dx in 2011. My new normal neutrophil count is 0.8 and I'm doing fine. In the beginning this was alarming for the Drs as Kat says, anything below 1.0 is a watch sign. The guidelines say to withhold the drug till it returns to normal, but I think now more Drs are taking a wait and see approach. Waiting until there's a definite trend or put you on an antibiotic as a precaution. The guideline for me now from my Drs are only concern when they're at 0.5 or below. Just be careful and by all means if you have a fever over 100, seek medical help.

Do you really want to be on antibiotics?
Or even take a chance with an infection?
I say take the drug break and get your white blood cell counts up per the guidlines.

[scuba]

I was diagnosed on 10/24/2016.  On 11/2 my white blood cell count was 72.5k.  I started on 400 mg/day Gleevec on 11/12.  By 11/28 my white blood cell count was 2.4k with neutrophils = 0.6k.  My hematologist told me to start splitting the pills and take 200 mg/day.  On 11/30 my wbc was still 2.4k and neutrophils were 0.8k.  I will have another blood test on 12/5  hoping to stabilize in normal range on 200 mg/day Gleevec.

 

Shweflen - since you were just recently diagnosed, it is not just your WBC' and Neutrophils that need to be monitored early, but the state of your CML. You should have had a FISH test and perhaps a PCR and bone marrow aspiration. Do you have these results?

[shweflen]

Shweflen - since you were just recently diagnosed, it is not just your WBC' and Neutrophils that need to be monitored early, but the state of your CML. You should have had a FISH test and perhaps a PCR and bone marrow aspiration. Do you have these results?

I had a bone marrow biopsy and PCR on 10/20/2016.  The result was recorded as "Bcr-abl:  Abl ratio  81.622."  I am not sure what units apply.  I assume that is a percentage.  The oncologist said that what matters is that that number goes down over time.  My next PCR is scheduled for 3 months after starting on Gleevec which would be 2/12/2017.

[scuba]

I had a bone marrow biopsy and PCR on 10/20/2016.  The result was recorded as "Bcr-abl:  Abl ratio  81.622."  I am not sure what units apply.  I assume that is a percentage.  The oncologist said that what matters is that that number goes down over time.  My next PCR is scheduled for 3 months after starting on Gleevec which would be 2/12/2017.

 

Yes - PCR is a percentage. What did the bone marrow show? Any abnormalities besides CML? Typically the report will show what CML gene type you have. Most have p210. Fewer have the p190 gene breakpoint. A cyteogenetic report shows how many of your blood cells are leukemic as expressed as a percentage when looked at under the microscope. This number usually starts out at 100% at diagnosis and decreases to zero as treatment proceeds. This is your first major milestone .... FISH = zero.

 

In my own case, my bone marrows had p210 as a high percentage with some p190. I also had trisomy 8 and monosomy 7 (very bad). In a short time the p190 disappeared as did the monosomy 7 (very good). I still have trisomy 8 which is something they just watch (goes up and down). Trisomy 8 is considered benign in adults - but may explain myelosuppression (mild) which I still have.

[shweflen]

I was diagnosed on 10/24/2016.  On 11/2 my white blood cell count was 72.5k.  I started on 400 mg/day Gleevec on 11/12.  By 11/28 my white blood cell count was 2.4k with neutrophils = 0.6k.  My hematologist told me to start splitting the pills and take 200 mg/day.  On 11/30 my wbc was still 2.4k and neutrophils were 0.8k.  I will have another blood test on 12/5  hoping to stabilize in normal range on 200 mg/day Gleevec.

My blood test on 12/5 now shows a white blood cell count of 1.6k and platelets are down to 75k.  The oncologist has told me to stop the Gleevec altogether for a week and then another blood test.  Has anyone else experienced this kind of drop?  Other than the potential for infection because of the low wbc or the potential for bleeding because of the low platelets is there anything else I should keep an eye out for?

[scuba]

My blood test on 12/5 now shows a white blood cell count of 1.6k and platelets are down to 75k.  The oncologist has told me to stop the Gleevec altogether for a week and then another blood test.  Has anyone else experienced this kind of drop?  Other than the potential for infection because of the low wbc or the potential for bleeding because of the low platelets is there anything else I should keep an eye out for?

 

The same thing happened to me ... most important is your neutrophil count. It needs to be above 0.4 (or 400 depending on scale used). Platelets below 50 (or 50,000 depending on scale) is a concern - Platelets below 10 is dangerous.

 

I was switched to Sprycel because Gleevec was not able to work when the dose was lowered from 400 to 300mg/day. And myelosuppresion was still bad.

 

I had many dose interuptions in order to allow my blood counts to recover. Each time I was restarted on Sprycel at a lower dose eventually reaching 20mg per day after starting at 70mg per day. It took many months before normalizing. Somewhere in this forum are my posts documenting my journey during that time.

 

What is happening is that your body right now is full of Leukemic blood cells which are getting killed off (good) - what's left are few good cells (bad). Your body has to re-normalize with good cells, which it will do over time. Your bone marrow is being called on to make many more blood cells because you are deficient. You don't have a great store of healthy normal blood stem cells, but they are there and they are re-building. Over several months your new blood system will replace the leukemic one. The key is to keep pressure on the leukemic cells. Lower dose is a way to balance. Hopefully you won't have many dose interruptions (I had several before stabilizing and recovering).

 

You need to be vigilant. Consider switching drugs if Gleevec doesn't work well enough at low dose. Make sure your doctor knows the protocols and options. One size does not fit all and your treatment needs to be "customized". At your current stage you need complete blood count tests every week to monitor your levels. I was re-started on therapy once my neutrophils reached 1.0 (or 1,000 depending on scale used). And I was stopped when my neutrophils fell to 0.4 ... 

[kat73]

schweflin - I, too, had to stop a couple of times in the early days of Gleevec, to let the counts come up out of the basement.  I also toggled between full dose and down to 300 and 200 a few times.  I remember my then-onc was cognizant, but not concerned about it.  Scuba's explanation is certainly the one I got.  What you'll find is that so much of dealing with CML involves WAITING.  Everything just takes a real long time to stabilize.  What's great is that USUALLY the TKI starts working right away on the CML, which is the point of all this, after all.  So, know that your story is very common, that your doctor is doing the right thing, that you're not in any danger, and that usually the body adjusts.  It actually can take many months. But I think, with your drug holiday, you will see the WBC come back up a couple of points by next week and that should reassure you.  Then, get back on the Gleevec!  Because you really want to drive the leukemic cells down hard and fast, ideally.  So the game plan becomes: Trying to keep above rock bottom, keep killing the bad cells while the new good cells can be re-manufactured and fill in; your white count should come up slowly as that happens.  Platelets, too.  Keep your chin up.

[shweflen]

Scuba and Kat73,  Thanks to both of you for your responses.  It sure helps to hear from someone who has been through this to reassure me.  I feel better.

[Antilogical]

I had trouble with low white cell counts - especially during my first year on Gleevec. Each time my absolute neutrophils went below 2.0, my onc told me to avoid raw foods that were particularly difficult to clean, like broccoli, cauliflower, and berries.  Also, he ordered me to avoid salads in restaurants.  Once the numbers came up, he let me know it was ok to resume eating some of my favorite foods.

 

Never fear - wine and chocolate were never on the naughty list.

[rct]

My Mrs hasn't had an ANC above 1000 since 2008, WBC hasn't topped 2000 since then.  It has taken a long time to get used to it, last count in August was 800/1900, we were ecstatic.

 

They have eliminated other autoimmune reasons for such low counts.  They have stopped Gleevec and we've seen all numbers climb, including PCR up out of undetectable.  She is at 200/300 alternating daily, PCRu, counts are as acceptable as she is going to get.  She has barely even had a cold in the last 10 years, has not ever developed a fever, we take normal precautions with food, nothing extravagant.

 

Docs at a major east coast research hospital told us in 2010 or so that these numbers actually mean absolutely nothing, that when they figured out how to count them they had to have some basis and reason for which to count them, which led them to count the first 10 people, average them, and come up with "normal" numbers, and we've been doing the same thing every day since.  They were never concerned with her extremely low counts after establishing no other reason for them.

 

It's a weird CML world.

 

rct

[beno]

The same thing happened to me ... most important is your neutrophil count. It needs to be above 0.4 (or 400 depending on scale used). Platelets below 50 (or 50,000 depending on scale) is a concern - Platelets below 10 is dangerous.

 

I was switched to Sprycel because Gleevec was not able to work when the dose was lowered from 400 to 300mg/day. And myelosuppresion was still bad.

 

I had many dose interuptions in order to allow my blood counts to recover. Each time I was restarted on Sprycel at a lower dose eventually reaching 20mg per day after starting at 70mg per day. It took many months before normalizing. Somewhere in this forum are my posts documenting my journey during that time.

 

What is happening is that your body right now is full of Leukemic blood cells which are getting killed off (good) - what's left are few good cells (bad). Your body has to re-normalize with good cells, which it will do over time. Your bone marrow is being called on to make many more blood cells because you are deficient. You don't have a great store of healthy normal blood stem cells, but they are there and they are re-building. Over several months your new blood system will replace the leukemic one. The key is to keep pressure on the leukemic cells. Lower dose is a way to balance. Hopefully you won't have many dose interruptions (I had several before stabilizing and recovering).

 

You need to be vigilant. Consider switching drugs if Gleevec doesn't work well enough at low dose. Make sure your doctor knows the protocols and options. One size does not fit all and your treatment needs to be "customized". At your current stage you need complete blood count tests every week to monitor your levels. I was re-started on therapy once my neutrophils reached 1.0 (or 1,000 depending on scale used). And I was stopped when my neutrophils fell to 0.4 ... 

The pharmacist at my cancer center likened it to a pasture full of weeds with just a little grass.  The TKI is working to kill the weeds, but even so, it takes a good while for the grass to grow back and fill in the bare spots.

[hannibellemo]

Adding to what rct said, different hospitals have different levels of normal. It isn't like there is even a nationwide standard!

 

Congrats on the missus' recent blood count, rct!