39 replies to this topic

[Trey]

Sprycel appears to have an effect on lowering platelet counts.  Although the pre-platelet cells (called megakaryocytes) are formed in the usual way and generally not hindered, the megakaryocytes do not proceed through the normal process for platelet formation (breaking apart into jagged pieces) in a normal manner.  For some this results in mildly lowered platelet counts.  For others with a tendency toward low cell counts, it could make the low platelet problem worse.  I have not seen this discussion related to the other TKI drugs, but that does not mean they do not have a similar issue.

http://bloodjournal....010-12-326850v1

[reedgirl]

If low platelets are a problem for some with Sprycel, is a drug break the solution?  Guess what I'm asking is once the platelets drop, does a short break from the drug "fix" the problem or is it something that would continue to occur once the person is back on the drug?

Thanks,

Audrey

[Trey]

Experiences among patients has shown that a drug break (or breaks) does help.  As with many side effects issues, it is not the same for everyone.

[scuba]

My take-away on this point is that one can't take Sprycel without careful monitoring.  It seems that staying on a TKI, Dasatinib in particular,  no matter what is losing favor in the CML medical community.  Going on and off seems to be the way to manage problems of blood suppression.

Unfortunately this means constant measuring since our bodies no longer perform normally.

Interesting study - may explain why my platelets have not shot up following Sprycel cessation.

[reedgirl]

As with everyone, this all just concerns me.  Greg has been off TKI since Feb 8th, waiting for counts to return to normal.  I suspect they are back in normal range and they will be calling very soon to get him started on Sprycel.  The way his body has reacted so strongly to the other 2 meds has me concerned that he will react strongly to this drug also.  During the time he has been off med's he has felt great, maybe he could take the drug for one month then be off a couple so he could have some good days...wishful thinking I know.  I guess time will tell how he does on this, perhaps the third drug will be the charm and he'll not have sever side effects.  On a good note, he has 2 siblings that were tested for a match, his sister found out the day after their fathers funeral she was a "perfect" match for him if it came to that!!

[Tedsey]

I have been on Sprycel six months.  I was on Gleevec previously.  At dx, my counts were very high.  After Hydroxyurea and then Gleevec, all my counts were very low.  I had to get shots to increase my WBC and eventually shots to increase my RBC and transfusions.  With Sprycel, my WBC and RBC improved a little and became, more or less, stable, except my PLT, which were already low, became lower.  However, I have been staying stable at 20-30,000 and have not had any problems.  My last CBC for my gynecologist last Monday showed an all-time high of PLT 51,000 (and that is considered a pretty safe count!).  Just in case anyone is curious, my WBC came in at 2.3 and my HGB was 8.5.  These are great counts for a "cancer patient".  My docs have no worries.  So, it is possible that my counts are improving.  Nevertheless, I had one high blip like this in my CBC before and then it went back to my "normal" range again.  I hope after 6 months, things are improving.  So, it may take some time with Sprycel.  So far, no one wants me to take a break.

I have been living with low counts since I started.  So, I no longer wait for my counts to get into normal range.  And I rejoice when they are consistent and the occasional "higher" counts.

But what I really wanted to say, despite last week feeling horrible, I have felt absolutely GREAT on Sprycel.  I hope and wish the same for your husband.  I hope what I reported about myself gives you a little hope that if things eventually stay steady for your husband, life can get back to some kind of normality.  (Sorry for the "italics".  They turned on suddenly and won't come off.)

Wish you both all the best!

Teds

P.S.  I think feeling horrible had more to do with a bout with depression and then it compounded with the problems in Japan.

     

[hannibellemo]

Hi, Teds,

I respectfully disagree with you that an HGB of 8.5 is great for a cancer patient at least if the cancer is CML. I was told that if my HGB went to 8 or below I should have a transfusion. Why your doctor let you go so low is beyond me, but that is a moot point since you reacted so badly to your transfusion when she finally let you have one, at what, an HGB of 5?! Mine is now firmly averaging 12.

I do agree though that my counts have been better on Sprycel than they were on Gleevec. At my last check up everything, except RBCs which were slightly low, was in the normal range. Also, like you my platelets, although normal, have never recovered to my pre-CML NORMAL ( Ahh, the Upper/Lower Case gremlins have returned.) I have recently experienced a petechial rash (purpura, can be a side effect of Sprycel) on, of all places, the tops of my toes! Had a CBC yesterday and everything is fine so the doc is not concerned, just feels my platelets are not functioning as they should and the friction of a particular pair of shoes (my favorites, of course) are causing it.

These are strange, strange drugs the way we all react so differently to them. I'm very glad to hear that you have been feeling good on Sprycel. I understand the depression about world catastrophes!

Pat

[mck_001]

My platelets have been very level since I went down to 70mg of sprycel.  They're getting freakishly consistent....the last five out of six bloodworks, they were exactly 142.  My ANC and WBC are another story.  Not as low as others and not as low as when I was on 100mg, but much lower than I want.  My anc had been pretty between 1.2 and 1.4, but tuesday was down to 1.1.  We're watching it to see if I'm trending back downward again.

I love this board, but I'd love it even more if we could all just move on from this and be a reunion board filled with "remember when we all were taking TKIs for CML...glad those days are over!" type posts.

[CallMeLucky]

"I love this board, but I'd love it even more if we could all just move  on from this and be a reunion board filled with "remember when we all  were taking TKIs for CML...glad those days are over!" type posts."

That's a nice sentiment....I look forward to that day!

[rickpister]

I had my blood test yesterday and my platelet count is 162.  I understand it is in the normal range but my recent bruise is reminiscent of my pre-dx.  Since I've been on Sprycel, my platelet count has been hovering in the low-normal range and one time shot below the 150 mark.  At that point I was taken off of Sprycel for about four days.

Anyway, Trey's post sounds consistent with what I've experienced.

[Johnc]

I was taken off of Sprycel today as my platelet counts went to 40 from 61 the week before. I was only on it for 19 days.. The Onc wants to see platelets at 50 before I resume. This is textbook as the http://packageinsert.../pi_sprycel.pdf. Is my doc just reading this.

What are people experience on being of Sprycel for a week?

Johnc

[Trey]

Probably a reasonable thing to do, however, the real key is whether you clot well enough.  Low platelets tends to be less important than whether you are a "bleeder". 

[Ray99]

     I have the same experience with Tasigna 600mg.  My PLT went down to 21 after starting Tasigna for three weeks.  I was off it for three weeks and the PLT bounced back to 184.  My Onc resumed the medication half dose for three weeks and then with full dose.  During that period of time, the PLT bounced between 100 and 130.  Since then it has been stabilized around 130 for the past three months.  It is not as high as I would like.  But my Onc does not have any concern.

     My experience showed that off medication for couple of weeks does help to solve the low PLT problem.

[Johnc]

Ray

Thanks for sharing your experience. I am expecting to travel across the country the week after next, hopefully I will get more than a 1 week break, the platelets actually  started declining about a month prior on Gleevecs after completing my 5th month of taking it. THey  were at a steady 115.

Johnc

[alexamay09]

This post couldn't come at a better time for me.  My platelets fell to 57, then up to 70 and down to 60 last week.  My blood wasn't clotting well when they took it today and I am expecting to be told the platelets have fallen below 50 - I was told if this happened I'd have to come of the Tasigna.  I am quite scared about stopping the meds as I've only had 8 weeks on it.  In your experience is it ok to break from medication?  I am scared that I will go backwards again with my bloods and its bad enough because they can't tell for sure which phase of the disease I'm in. 

alex

x

[Johnc]

Alex

To answer your question many folks take breaks from their medication on this board. Do a search on "breaks" and see what you come up with.  Maybe some of the Vets will chime in. I am still a rookie at about 7 months

Johnc

[Ray99]

Alex,

    As I mentioned earlier, I was on Tasigna for only three weeks (since dx), when my doc took me off due to low plt.  It looks like you have the same problem as mine.  During the six week period, three weeks off followed by three weeks half dose, my PCR reading fell from 10.4%IS to 3.7%IS.  This tells me that it is not too scary to be off TKI.  The PCR might fall slower than otherwise, but it is important to take care of the low plt problem.  I had the same concern as you when my doc wanted to take me off.  But he assured me that it is the right thing to do.  Discuss it with your doctor.

Ray

[alexamay09]

Thanks guys - as it happened the platelets were 80 today so still low but no medication break needed. It's so good to have this board - don't feel so alone

alex

[Johnc]

I have a general questions for folks taking a break from their TKI meds

I have been on the TkI for approx. 7 months, been off of them for 5 days now and feel like I am going through a drug withdrawal. My bones are sore and I just ache all over

What are folks experience during your drug breaks?

Johnc

[Ray99]

John,

   I only have minor side effect on Tasigna (minor rash and cramp).  But during the three week drug break, all side effect are gone and I felt great.  Hope this helps.