12 replies to this topic

[Tedsey]

Trey mentioned that PLT are one of the last things to get "back to normal" after TKI treatment.  I was wondering what the average time is for them to rise.  Mine stay at around 20,000 since last Aug (with the switch to Sprycel).  They were a little higher when I was on Gleevec (40,000-50,000).  So, I have been low since just after dx (the meds knocked them down very quickly from about 600K).  It has been 18 months.  Is this slow regrowth something to be concerned about?

Also, cell turnover seems to be sluggish all over my body.  I feel like I am a zombie with flesh rotting as I am living.  This is especially so in my mouth.  Since Sprycel, I have been suffering from constant, gaping mouth sores.  I have already lost all the weight I have gained.  Now I am getting back to very skinny.  It is kind of like feast or famine for me with food.  For the week I don't have bad sores, I gorge.  The rest of the time I am on a pure liquid diet (hee, hee, can think of some jokes here---maybe I should really hit the bottle).

Teds 

[Trey]

When I say the platelets are often the last to normalize, I am usually discussing the first several months or possibly up to six months.  Your issue is more complicated than that.  Longer term I really don't know if that holds true, but it might; just not enough data.  But your good stem cells are just not doing their job.  Whether too many blood stem cells were lost, or the good cell production is especially suppressed by the TKI drugs in your case, is hard to say.

But the platelets can also play "hide and seek".  They are stored (sequestered) in the spleen until needed, and maybe the spleen remembers how abused it was by the CML (the "pissed off spleen syndrome") and is hoarding platelets so that they appear lower than they really are on a CBC.

[Tedsey]

Thanks.  I am not one of those miracle Sprycel people either (I cannot help but feel so defeated after I read someone with a high WBC, like me at dx, is MMR in 6 mos to a year).  However, I did reach CCyR last Dec.  Hope it stays.

Teds

[Pin]

Hi there,

Just wondering if I could get some advice re low platelets.

I'm on Gleevec 400mg and my counts have been doing pretty good so far. The latest test has shown a drop in platelets (still within normal range) but I'm just wondering if this is anything to be concerned about yet? Or is it just a case of wait and see what the next test shows...I did notice that after my test this morning I had blood all over the band-aid (less effective clotting I guess...). Can't remember what my neutrophils were at diagnosis, I'll fill it in later tonight...

Week	Haemoglobin	WCC	Neutrophils	Platelets
0	128	157.0		* clumped
1	128	47.2	38.2	387
2	118	9.6	6.57	387
4	118	4.6	3.3	157

Am I getting prematurely worried?

[GerryL]

HI Pin

MIne went from 463 (H) in 13 July (before starting Glivec);

then 516 in 09 August (H) after starting Glivec

438 on 18 August (H)

149 on 02 Sept (L)

then 210 (within normal range) on 15 Sept

You're in the normal range according to SN. (150-400)

[Pin]

Ah thanks for sharing your results - It sounds like I'm not abnormal then!

I had read Trey's blog about blood counts and them taking a bit to recover after the leukemic cells are taken down (pew, pew!) but I was just wondering if the bigger drop was something to be worried about considering they didn't change after my last test...

Thanks again!

[GerryL]

Hi Pin,

I'm not sure if Glivec causes the same rate of low platelets that Sprycel does, but better to ask then stress about it.

Gerry

[CallMeLucky]

My experience was similar, and like you, I was concerned about the downward trend.  My platelets were 313 at dx (not high for CML).  I then went to

268

202

144 (here's where I started getting worried)

120 (was not happy at this point, although I knew others had gone much lower and were ok, so I tried not to let it bother me too much)

162 (bounced back up above normal around 10 weeks)

167

171

195

186

175

178 (this was just the other day when I went to the urgent care because I was getting strange bruises on my back.  I thought my platelets must have bottomed out, but they were in the normal range)

It is frustrating and we worry about every little thing.  You worry when the numbers are going down, afraid they are getting too low, then you worry when they start to go back up because you think maybe you are losing response.  Just try your best not to worry until there is something to worry about.

[Pin]

Hey thanks for sharing your results too Lucky.

It sounds like Gleevec is not as harsh on the platelets for most, so I'm thinking if I continue like this, they might drop a bit more but hopefully level out and then pick up again...

You're exactly right about the worrying though - if feels like every little that happens could lead to something worse. But really, most of the time it doesn't, so it's important to stay positive, because realistically that's the more likely outcome

Thanks again!

[Zu-ko]

This sounds very familiar to what I have experienced in the last year since being diagnosised. Started Gleevec to Sprycel and am now on the study drug Ponatinib. I continue to do the same thing with my platelets dropping all the way down to 7. They take me off then wait for them to rebuild and start me back up. My Dr told me to have my silblings typed for a possible BMT transplant. Has your Dr said anything to you about that? I feel your pain with the mouth sore issue, I am going through the same thing.

[mck_001]

Hey Teds....my platelets have been NORMAL on the 70mg dose (and I'm in a CCyR again and having a great molecular response on the lower dose as well).  Everything is better on this dose for me...side effects, counts, and my response is good, so I'm happy!  It took from about January (when I lowered the dose) until maybe March/April for my platelets get to better levels, I think...everything's running together with my memories of bloodwork.  My neutrophils are leveling at 1.4-1.9...usually right at 1.4, though.   I will say, that even though my plaetelt counts are normal, my bruising still comes and goes, which tells me that while the number is good, the function isn't the best.  MD Anderson mentioned if my bruising worsened from when they saw me in May, then we may need to talk, but it hasn't been as bad as it was in May since then, so I'm not going to borrow trouble.

[Tedsey]

Go figure, not bleeding or bruising at around 20-30K PLT and 100mg. Sprycel!  I seem to clot normally when cut and have totally killed myself a million times (like falling up the stairs the other day and banging the heck outta my knee)----no bruises.  Crazy man!  Anyway, I am glad things are going in the right direction for you!  You were having such a hard time.  I got scared when I read you had lost CCyR.  And I am so happy you were able to gain it back again at 70mg!  Phew!  Right now, my onc wants to keep me on 100 due or die (I should stop using such words as "die" or "killed" shouldn't I?---we face that too much on a daily basis).  Presently, there is no ground breaking news about my molecular response on Sprycel.  But although sluggish, it seems to be getting lower.  And my ANC stays around 1.0, so that is OK with my onc.  Hope the bruising gets better!  Just trying to buck up and get ready for my BMB on the 6th.  Hope your molecular response is so good you are through with 'em.

All the best,

Tedsey  

[mck_001]

Just goes to show you that there are no two CML journeys exactly alike.  However, there are those who stray farther from "textbook" than others...