10 replies to this topic

[CallMeLucky]

Just had a CBC done this morning.  Overall numbers look really good, including WBC of 3.8.  My only concern is my platelets, which have been steadily declining.  I am still in "ok" range but am looking to hear what other's experience has been.  I'm about 6 weeks on Gleevec 400 mg.  My WBC at Dx was around 68, my platelets were 313.  Today my platelets are 120.  I've noticed that the rate of decline seems to be slowing, although I'm not sure if that means anything.  My Dr said it is not unexpected to see them drop, she suspects they will level off at some point.  She said it would be a problem if I started to get down around 50.  I know sometimes the counts drop and people have to come off of drugs for a little while and then start back up again and sometimes that helps.  I don't want to get too far ahead of myself.  My next CBC is in 1 month.

[CallMeLucky]

Has anyone else had what I described above?  I was thinking it was fairly common, but now not so sure.  Any feedback would be appreciated.

[Trey]

You were diagnosed somewhat early, with a relatively low WBC compared to most.  Your platelets were are also normal at diagnosis, but many of us had very high platelets (about 1 million or so).  It is normal for platelets to jump around for a couple/few months after starting drug therapy.  The "most normal" scenario for platelets after diagnosis and starting drug therapy is an initial small drop, then a spike up, then a continous drop for a couple months, then going too low, then slowly coming up into normal range.

[CallMeLucky]

Thanks Trey

[cryjohn]

Gary,

I have been experiencing the same thing with my platelets.  I was diagnosed May 06, 2010, WBC was 35,000, Platelets where around 735.  I started on Gleevec on May 15, 400 mg.  Since starting Gleevec my platelets have been running around 120 to 130 pretty consistently.  I just reached 145 at my 3 month BMB.  My WBC has been set at around 3.0 to 3.5.  I have just with in the last two weeks started to feel less fatigue, Yeah! 

Hope this helps, take care.

Crystal

[CallMeLucky]

Thanks Crystal, it is reassuring.  If I stayed where I am at, I would be ok with it, I know normal for CML will probably be below normal for a lot of the counts.  Just don't want to get too far down there.  I tend to get a lot of nose bleeds and the thought of low platelets is a concern for me.

Thanks again.

[cryjohn]

Lucky,

It's been a couple of months sense this discussion, I was wondering where your platelets are at?  I am still trending around 120.  My WBC has been around 2.5 and my ANC around 1.2 to 1.4 for the last couple of months.  Although my counts are down, I did receive fantastic news, my 6 months FISH was 0% (diagnosis was 100%, 3 month was 11.5%).  My 6 month PCR was .01% (did not do PCR at diagnosis, 3 month PCR 2.17%).    If what I've read is the trend, hopefully within the next year my counts will return to a low normal.  I know you have your 6 month BMB coming up and I hope you get FANTASTIC results as well...

Take care,

Crystal

[CallMeLucky]

Hi Crystal,

My platelets leveled off after that post.  The next CBC a month later they jumped back up to 162 and then in Oct they were 167.  I'm not getting any blood work in Nov and I go on Dec 13 for BMB, when I'm sure they'll do a full blood work up.  As of now they seem to be leveled off and hopefully they will stay right where they are.  My WBC has been pretty good went as low as 3.8 (just below normal) then jumped back up a little to 4.4, and then back down to 3.8.  Hopefully they will stay put as well and just dance around that low end of normal.  My ANC, thankfully, has been pretty solid between 2.2 and 2.4 since returning to normal range.  Last FISH showed a nice drop from 98% positive to about 5% positive so hoping BMB will show a nice big zero.

Congratulations on your negative FISH, that is awesome!  Your PCR looks really good too, that's a nice drop from 2.17 to .01.  I wouldn't worry about platelets of 120, that number seems to be acceptable for CML and not too far below "normal".  I'm sure you've read some of the others who are dancing with low counts and platelets are way down and they are doing okay.  If you stayed at 120 I think that would be fine (just think of it as you are less likely to have a stroke )  2.5 is below normal on WBC, but your ANC is 50% which is supposed to be a good indicator and 2.5 is not too bad compared to some others, hopefully you'll hang there and they will creep up over time.  Again, I think you could be fine at 2.5 if that were to become your new normal.

Thanks for checking in, I will post BMB results in a few weeks.  Hope you had a good Thanksgiving.

[Marnie]

Hi, Lucky. . .I've been on Gleevec for coming up on 18 months now.  My platelets started at about 400 and have been steadily declining. Lowest was just below 150, but today's blood test had them up to 193, which is the highest they've bounced in a long time.  They have fluctuated in the 100s for quite awhile now.  I got worried when they hit 150, but got a lot of reassurance from folks on here that there wasn't much to worry about unless they got REALLY low.

Now just crossing my fingers that my PCR results will come back with numbers heading in the right direction.  Things took a turn for the worse a month or so ago, and I'm hoping it was just a blip.

Good luck!

Marnie

[Tedsey]

Dear Luck,

Just in case this happens, I have been living with PLT in the 20,000 range for the last 3 months.  I have been dx a year, and since TKI therapy, I have never had a number over 70,000.  So far, I am fine, even with my extra periods.  But luckily you don't have to deal with that.  Try not to get too worried.  Hope all is well.  Nice to hear you had a great time on your vacation with the fam.  "Time off" can be rejuvenating and so needed for those of us with this icky disease.  I am glad you had moments where you did not think of CML at all.  That is a real vacation!  I wish you peace.

Teds

[CallMeLucky]

Thanks - to clarify, this is actually a thread that is a couple of months old.  As of today, my counts have stabilized and I'm hoping they will stay put where they are.

As for vacation, it is really incredible that a week ago I felt great and since being back I am feeling worse and worse each day.  The physical manifestation of side effects are hitting hard this week.  Very tired and achy.  On vacation I had some stomach upset once in a while but that was pretty much it.  Now if I could only afford to move to a tropical island, maybe it would all seem better.