26 replies to this topic

[scuba]

I had a blood draw today CBC (PCR & FISH).  The CBC was interesting and my Oncologist as a result wants me to STOP Gleevec for two weeks.

Results:

WBC:  1.7  (3.8 -11.0 normal)

Neu:  41.4% (40.0 - 80 normal)

Anc:  0.72 (2.0 8.0 normal)

RBC:  3.99  (4.5 - 6.10)

HGB:  13.0  (13.5 - 18.0)

HCT   38.4  (42.0 54.0)

Everything else is normal (platelets are good)

The concern is the low WBC's and Anc.   My concern is going off Gleevec .... any thoughts on this? 

I am very hesitant going off Gleevec.  I won't know my PCR/FISH for another 7 to 10 days.

[rct]

A 1.7 WBC is pretty low, and optimal ANC being 50% give or take, that's only 850 or so.  I am not surprised that they stop you for a couple weeks.

The old days said "Don't Stop This Drug", and even Druker was hard on that philosophy.  He is only somewhat less hard on it, that it MAY help you to go off a couple weeks.

Problem is, when MOST, not all, MOST people tank their whites and neutrophils like that, it takes a long time for them to get themselves back up, and two weeks may be fruitless.  It may behoove yer docs to Neulasta you, that's usually good for a month.  Not a great thing to have to do, but it'll keep you in Gleevec the entire time.

The low whites and neuts can resolve itself quickly, as it did early on for my wife.  After two years of everything just ducky, it came back, and we've been trying to resolve it for two(2) years.  As yet, not resolved, Gleevec and Neupogen is the current answer for the forseeable future.

We have gotten used to the situation, but never used to how the drug combo effects my wife and her attempts at living this life.  It is pretty awful for her, and she motors on with it all.  I can't believe it sometimes, but this is what it is for her.

Good luck with it.

rct

[scuba]

I guess I get a holiday from meds for a couple of weeks.  I wonder if I will feel different.

I am curious what the effect of no TKI for two weeks will have on the Leukemia?

[rct]

As I understand it, a couple of weeks is pretty much negligible unless you actually PCR'd like every day.

Good luck with it, I hope your counts rebound and stay there.

rct

[Trey]

It is the recommended approach.  It often helps with the low counts.  Maybe you could negotiate it down to 10 days if you bounce back quickly.

[hannibellemo]

I was off Gleevec for 7 weeks when I was waiting for my liver enzymes to come down and make switch to Sprycel. Be careful - you might get to like it! I felt truly wonderful and normal.

Don't panic over a couple of weeks off - I had an 18 day vacation for low counts no big deal.

Pat

[scuba]

Thanks all ... I am afraid, I might like it.  I have to travel to San Jose next week on business.  The thought of not having to take the pills with me - and more - the chance I might feel more 'normal' again has me feeling quite good.  I may not want to resume - maybe I'll just head into remission for good.

Nah.....just kidding.

[scuba]

Would a Gleevec Plasma test be useful to learn if I have more Gleevec in my blood than is 'normal'?

Perhaps a lower dose is best in order to keep pressure on the leukemic cells.  As much as I am looking forward to no drugs for a while, I hate knowing that the leukemic cells get a break also.

[Gene]

Hi Michael,

I'm sorry to hear about this.  When I was on Gleevec (currently on Tasigna) and my white blood cells tanked about 2.5 months into my treatment, my dose was reduced to 300 mg.  My WBC was 1.2 and my neutrophils were 350 (or .35).  I was put on an antibiotic as a precautionary measure for two weeks.  It was the height of flu season and my doctor encouraged me to avoid public places until they saw improvement.  I stayed indoors as much as I could for about two weeks.  My blood count was monitored weekly, then monthly once I stabilized.   My counts ever so slowly rebounded (never reaching normal but hovering just under the normal range).  I was relieved to have the reduced dose since my stomach and Gleevec were not getting along.  I don't know if lowering your dose is an option for you but if you are nervous about stopping Gleevec, you can ask your Onc his opinion.  Good luck.

[scuba]

Thanks Gene ... I am interpreting this turn of events as evidence the Gleevec is working.  I won't know for sure until my PCR/FISH come back and confirm.

I am also thinking that I might switch to Tasigna at this point.

I am still trying to understand what is the biology of this.  Why, for example, my normal WBC's are suppressed when Gleevec is only supposed to affect the bcr-abl cells.

[rct]

There is no understanding.  The people that do this for a living don't understand it.  Gleevec works, for the large majority of the very very few people that take it, without disturbing their marrow factory.  The few that it does disturb the marrow factories of do not warrant further investigation and or resolution to this.  It's just the way it is.

rct

[scuba]

yeah but ... the 'marrow factory' creates a slew of cell types.  In my case, only the WBC's are affected - the red cells, platelets are normal (haven't dropped like the whites).  Since I was at 50% Leukemic cells at diagnosis (BMB) - I thought I had plenty of normal cells to keep things going while Gleevec was attacking the bad cells.  I was not 100% FISH as many are at diag.   So I am a bit puzzled - that's all.  Always seeking to understand.

Trey refers to the normal cells having to "wake up" - we'll see what the next two weeks brings.

[rct]

Same goes for my Mrs, the only problems have been with WBC and ANC being too, and sometimes dangerously, low.

Gleevec blocks the proteins that cause the leukemic cells to reproduce without regard to their own mortality.

That blocking is carried out via an interruption in a complex series of signals to the cells that dictates their lifespan(s).

It is believed, and this is all wild fantasy scifi because nobody really gets all this, that that interruption has also caused an interruption in the day to day signalling of the marrow factory, at least in this case, the marrow factory of my Mrs, your mileage may and probably will vary.

Step One is to stick some Neulasta/Neupogen in there.  If the marrow responds by making way too many whites with a very good and healthy ratio of neutrophils, that is good, yer marrow sees the e-coli and responds.

So far, my Mrs had normal response to the Neupogen, so that is in and of itself a good thing.  The hope is that at some point, just like they did before, her factory will respond to normal signalling.  That is, normal signalling with Gleevec involved in it.  She did have reasonable marrow factory while on Gleevec for over two years, so it is hoped it will re-gain whatever it somehow lost in the middle of it all.

So even while it is pretty clear that without the TKIs the marrow does the right thing, they are very very hesitant to blame the TKI. Weird how it works, but that's how they are about it.  I don't think that myelosuppression to the point of needing intervention is something they want tacked on as a side effect, so they call it "an unfortunate consequence" of taking these drugs.

Your puzzlement and seeking to understand are very understood over here, there just aren't any answers to the whites/anc problem.  At least for us, two year plus now, both coasts of this country, there are no answers.  I hope you find one, because I'd sure like to hear it too.  Even better, you won't need an answer, that would be even better.

rct

[scuba]

RCT - is this a Gleevec issue or do the other TKI's (Tasigna) cause this as well?

[scuba]

I almost forgot !! 

I CAN EAT GRAPEFRUIT AGAIN.  GREEN TEA.

[rct]

Druker did not want to go from Gleevec to Tasigna, he felt that she would do the very same thing, no matter which TKI she took.  He is of the belief that the signalling system is all fubarred up, and that TKI in general causes it, though the mechanism is not known.  So if he is right, he thinks that any CML'r having chronic, intolerable low counts on one TKI will have it on another.

Our oncs wanted to try Tasigna, just try it.

Unfortunately, not two weeks of it and counts too low, that after them not really spinning up all that great.

So it was either Tasigna and Neupogen, or the devil we knew, Gleevec and Neupogen.  We saved Tasigna for the hopefully never to come rainy day.

The short answer is that a brief try of Tasigna produced the same results.  As with every problem encountered with these drugs, your situation may and probably will be entirely different.

I will point out that WBC/ANC are numbers derived from peripheral, circulating blood.  The actual infection stuff that goes on is for the most part carried out by the residual cells in the tissue, for which there is no counting.  Many would get to anc counts that my Mrs has had and be in plastic bubbles.  She has, touch much wood, had maybe one cold, two possibly, in two years of this crap.  They can't explain that either.  To demonstrate, have your blodo drawn at a lab two miles from your house one week, and drive there.  Next week, jog.  Second week will have much "better" peripheral WBC/ANC, the exertion causes the tissue to release.

rct

[scuba]

I thought (read) that exercise did the opposite (decreases WBC's) - perhaps for the same reason - tissues suck it up.

Don't really know in either case.

[CallMeLucky]

Exercise will increase WBC - I tried to convince myself the day my Dr called and said my WBC was 35 that it was nothing more than all the exercise I had been doing.  She said exercise would raise it, but no where near the levels I was at.

[scuba]

http://jap.physiolog...tract/75/6/2425

Yep - sure enough.  Thanks for the corrected info.

(I read that intense marathon training type exercise does in fact reduce WBC's - but normal exercise does the opposite).

And normal exercise does what RCT suggested - the bodies tissues disgorge their WBC's into the blood stream.  Maybe I'll go for a run prior to my CBC blood draw next week just to get a psychological lift.

[Tedsey]

So, here on the board is more support for moderate exercise.  Wish I could join in on the fun.

Michael,

I already freaked out enough for all of us on the board.  So, I hope you are calm about your last CBC.  All I can relay is my experience.  rct mentioned that in the old days, Dr Druker suggested people stay on the TKI at all costs.  Well, the old days must have been last April (I hope this just represents how fast science is moving and not confusion).  It was then that he told my onc for me to stay on G at all costs.  So, he suggested GSF stim shots (for WBC) instead of breaks.  But, I already had almost two months break since starting G last Dec (1 break was about a month and one was a week and a half).  The 2 breaks were pre-Druker advice.  And for you, the breaks may solve the problem. 

Since it appears the experts waffle, and like rct says, they won't admit it is the drug, which it may or may not be, something has to be the disease, anyway, there is still a chance that your WBC and ANC will go low before it gets close to normal again.  That is what happens to most people, but of course, not eveyone on G.  Are you getting weekly CBCs?  My last onc had me get them every other day when the low counts started to get dangerously low (PLT 20,000, ANC .3, WBC 1.2).

As for the numbers, oncs appear to vary in their beliefs about what it too low and what is functional.  I think the Wickipedia definition is best so far. http://en.wikipedia....eutrophil_count

My very experienced onc now (30yrs) compared to my last (3yrs) tends to be much less alarmist.  At ANC .7 she held the shots.  When it got to .3 is when she suggested Neulasta.  My last onc had trouble with anything below 1.5.  And like rct's wife, and again, knock on wood for both of us, I have not gotten sick very much and when I did, I recovered in a normal amount of time.  And I am around, as rct has said, "snotty-nosed" toddlers all the time.  And the places we take the kids are, more or less, "germ factories".

So, with .8, although low, you will probably be able to fight off most bacteria (it is just a rough estimate; tomorrow you could be a 1.0 and that would probably be fine).  But ANC is not the whole picture when it comes to how well you can fight infection (you would have to question Trey about that).  And your own experience will say a lot about how your immune system is working.  And that is really all that counts.  Wash your hands, carry hand sanitizer and don't touch your face.  Good advice for anyone, really, but esp. for us with low ANC.

Knowing you from the boards, take the break.  I think it is all a judgement call (take a break or go off and get stim shots).  And we cannot predict the future (well, we could go to the future, but that is another topic--it has been theoretically supported, but that would take some space travel).  With the stim shots, you actually should not take drug breaks.  Here is hoping you never have to go near 'em.

Enjoy the holiday.  I know you will.  I felt great off Gleevec.  It appears most of us CPers noticed a difference.  Eat grapefruit in copious amounts and drink that green tea.  I used to live in Japan and drank it in large amounts every day for years.  But since most Japanese do not get CML, I don't think it contributed, but who knows?

BTW, my WBC at dx was tons higher than yours.  I wrote you with my numbers.  However, my blasts were between 1% to 2.6% tested a few times (I was dx at a teaching hospital, so a fellow and a couple others ran the same test 3 times--and I had 3 different answers).  And PCRs are only an estimate, but we do live our lives by them like they are the law.  And I guess for our disease, it is the closest we can come to an absolute.  But right now, we can never really know exactly how many offspring (BCR-ABL) are really in our blood.  Like rct says and also Trey, you can only see how this disease is playing out in you and what works, to really know anything at all.  It sure helps talking on the boards though and observing what others report about themselves.

Oh, when I was off the Gleevec, my WBC counts barely raised.  After a month, they did not really raise more than .1 or .2  That is another reason we went to the stim shots.  It wasn't until my HGB was effected and I didn't respond well enough to the ESA (RBC stim shots) and G that I was taken off G and put on Sprycel.

Just my two-cents worth, again.  Hope your counts make a come-back.

Take care.