18 replies to this topic

[Johnc]

My platlets started at 519 about 6 weeks ago(start of taking Gleevecs) and are now at 116. All my other counts crashed and bounced back and the onc is satisfied except my platelets.

Are platelets last to come back and how low did folks go and duration of time before they came back?

Thanks in Advance for responses.

Johnc

[wallystl]

Hello Johnc:

I am 3 years in & have been through the same Platelet issues.  At one point mine fell to 28-Drs. were going to transfuse me @ 25.  They made the decision to "hold" the drug, washed me out for 1 week & redosed me.  That worked however my Platelets have only increased to 119 after 1 year.  At the low range you will notice bloody nose, easy bruising. 

Good Luck, Wally

[Trey]

Platelets are often the last blood count to stabilize.  It may continue to bounce around for a while. 

[Johnc]

Wallystl and Trey

Thanks for your input

Johnc

[pammartin]

My platelets were right around 2 million at highest point, then after adding the meds they dropped to 49,000 in about three weeks.  It has taken about 4 months for them to reach and then hold between 180,000 and 220,000 which seems to be my 'new' normal.  While they were heading back up, they did jump around quite a bit, pretty sure Trey posted the same message to me back in January.  Like Wally mentioned, low platelets can cause some side effects with bleeding but I never noticed any problems, even when mine were at the lowest.  The only symptom I had was the dreaded red dot rash or petechiae it came on pretty quick but also disappeared in about 5 days.  Best of Luck!

Pam

[idahobeavers]

my plats are sitting at 46 and my wbc is 2.1

[pammartin]

Sarah,

I don't have your history in front of me, but when my numbers were that low I had to take a three week break from the Sprycel till they recovered.  Are you in the middle of a break, or oncologist considering you stopping the TKI for a short time?  They also watched my absolute neuts, Scuba and Trey helped me understand all the medical jargon.  Hope you have a relaxing Memorial Day.

Pam

[idahobeavers]

heres my last special cbc the one they send off

wbc 2.5,rbc 2.41,hgb 9.7,hct 28.6 mcv 118.7 mch 40.3 mchc 34.0 rdw 20.7 plt 46 mpv 9.8 ne%42.4 ly%42.5 mo% 8.4 eo%6.7 ba%0.0 ne#0.9 ly#1.4 mo#0.05 eo#0.2 ba#0.0

manual diff

segs%34 lymphs%56 mono 2 eos 8 baso 0 band 0 plt morph normal plt est decreased aniso 2+ macro 3+ poik 1+ teardrop rbc rare rbc frag rare .does this say anything to you. and no i am still taking 100 sprycel daily and she has cut me down to seeing her every 3 months

hope your memorial weekend is a good one

[Cliffee]

I'm on Gleevac 400 as well.

My platelets started at 197 and continually dropped down to 51 at around two months. They then started coming up and are now right at 140 at 10 months. They hovered around 110 for a few months (3-6) before starting to rise up again. All other CBC levels have been in the norm range since day 14 post Gleevac.

My current onc and Dr. Druker have both told me it is normal for them to drop off at first as your marrow is recovering.

Hang tight!

[Susan61]

Hi Trey:  I am still in a quandary about my last blood test, but I do not see my Oncologist until around the 4th of July.

I am doing my blood work with a PCR test the end of June.  My WBC was 3.0 and RBC was3.15  HBG 10.6 HCT 31.0,

and this has been my normal for years.  I have no concern on that, but I did not like the 96 on the Platelets. I know I still have room there with that count.  I think it was my filtration rate of 43 on the kidneys that bothers me the most.  I did look back through quite a few years, and I have been in the 40 range before.  I was hoping this would come back up on the next test.

     I was also wondering if my doctor cuts me back to 200mg of the Gleevec, if it would help my numbers considerably.

Did you decide to cutback on your own, or was it under the advice of your doctor.  Knowing you it was your idea.  How long ago did you cut back to 200mg.  I know you have maintained your PCRU at that dose.

My other question is if Gleevec comes in 200mg.  I have only seen the 100 and 400 on the list when I order.  I was also wondering about a 300mg. dose, but I do not think that would make much of a difference..  I have to see what she says, and I was wondering about cost on a lower dose.  I am always looking for some answers to ease my mind.

[Trey]

Susan,

You have lived on the edge of anemia and low kidney function for quite a while.  It is very possible that lower dosage Gleevec could help with one or both, but I cannot offer any guarantees.  The only way to know is to try it for at least a few months. 

As for me, I decided to do the reduced dosage on my own.  I was such a fast responder to Gleevec 400mg that I assume my body uptake of the drug is very high.  Others may not have the same good fortune.  I did it in between changing Oncs so I did not ask permission.  But I have been on 200mg for over 3 years and consistently PCRU (and 3 years PCRU before reducing the dosage).  I believe it has helped reduce side effects. 

I take the 100mg tablets.  They are easy to take, and I take 2 per day all at once.  I highly recommend the 100mg tablets.  I found that breaking the 400mg ones made them hard to swallow with the jagged edge. 

[triciad]

Hi John-

My platelets are usually around 70 - 100 and have been for over 7 years with no issues.  I've had surgery with my platelets being in the 80's and had no problems.  Everyone responds differently but my oncologist feels that is now my new normal.  I had a few platelet and blood transfusions the first year while my counts stabilized but nothing since.  I've been on Gleevec, Sprycel and now Tasigna.

Good luck to you!

Tricia

[Susan61]

Thanks Trey:  I have been PCRU for 9 years, so its probably worth it to take a chance on reducing my dose for many reasons.  I still get so many side effects, and it would be amazing if I could eliminate some of them or make them less annoying.  I am anxious to see what this next blood test shows before I even reduce my dose.

     My new Oncologist is very good with all the latest advances in treatments etc.  I think she will be curious to see how I do.  She said I am her only patient who has had CML this long, and been on Gleevec this long. 

    I will know more in July.  Anything we do, can surely help someone else trying to make decisions for a better quality of life.

[Susan61]

Hi Billie:  I have had a lot of weird things going on with me like you said since May.  Some of the things have resolved like the horrible non-stop nausea I had.  I am not really that concerned over the Platelets, as I know they would have to go a lot lower before anything would be done.  I am just curious about my kidney functions.  The Gleevec has been very good to me for many years, but I do know that it can effect the kidneys in some people.

     I am okay, and thank you for your concern.  I would like to take the chance on the lower dose of Gleevec to see if I would have a change in my filtration rate on my kidneys.  I know some others in our group have had some kidney issues also.

    My other thought is that maybe 400mg was the dose during the trial that they found to be most effective, but that does not mean it has to be the dose now after getting to PCRU.  I guess I am getting a bit daring in my old age.

I think of how well Trey has done, and just to get a break from some of the side effects would be fantastic.

   I just told my husband this morning that I cannot do what I used to do, and it drives me nuts.  I do realize that as you get older, and different things develop it does slow you down a bit.

  When I read all that you do I think how great it is to be able to do what you do.  God Bless You

Susan

[reedmary3]

John I completely understand what you're going through. My platelets have dropped and are continuing to drop slowly...which is very disconcerting Right now they are at 150, which isn't so low to be concerned, but the gradual decline is still worrysome. My doc is going to monitor it for another few weeks, and if they continue to drop, change course. Good luck to you!

[Tedsey]

triciad,

Glad to hear I am not the only one with this issue (not that I am happy to hear that you have to deal with it).  You are the first person to write that you had this issue for years.  I have not had anywhere near normal PLT since staring TKIs (20-30K with a blip up to 50K and one to 70K recently; numbers go up and down, but never over 70 or below 20). I was beginning to think this was a bad sign.  I have only been dx 2.5 years compared to your 7.  Phew!  Best of luck to you and continued good health!

Tedsey

[pammartin]

Hi Sarah,

I have to admit total ignorance with most of your labs.   There are others here that will provide sound, intelligent comments on your numbers.  I only noticed that your recent results were very close to mine when I had to take the 3 week break from Sprycel.  I would repost your current results on a new thread and there are many people here who will help.  I openly state I perhaps know just enough to be dangerous.

Off to do laundry and clean up the house, I think I would rather take a nap.

Pam

[pamsouth]

Trey,

Could you elaborate a little more on changing dosage in between oncologist.?

When you switched to a new oncologist did he not ask the normal questions, like what dose of Gleevec are you on?

Did you just say I would like to try to lower dose in half?

How does one go about getting a new oncologist to lower the dose and stay on his/her good side, or not intimidate the doctor.

PamSouth