17 replies to this topic

[janlyn28]

Edited to add update....since the original post this is,whats happening and I'm rather frustrated. My son's onc is in the process of getting him switched from the disatinib to nilotinib. On August 30 his PCR was 2.0..up from 1.67 on July 7. He has been on the 100mg disatinib since mid-July. His last break from meds was July 7-14. He just had blood work 2 days ago to check his platelets and those results showed his platelets up to 110. On August 30 they had been 44. With his platelets being back up to a good level I would like for the onc to give the disatinib a little more time to see if his PCR will start going down again. He was off meds for a total of approx. 3-1/2 wks in the 2 months prior to the rise in his PCR. I am apprehensive about the nilotinib, because of the whole new set of side effects and especially the black box warning. Is my thinking clear off on wanting to give the disatinib a little more time and rechecking his PCR, say in another week or two?

Original post...
I am new to this forum and am posting on behalf of my son. He was diagnosed July 2015. He has been on Disatinib since diagnosis.He was started on 100mg but was not responding to that so his Dr. upped his dose to 140mg. His CML responded very well to the higher dose. His PCR was steadily dropping. Dropped to .89. But one issue he has had the past several months is that the meds are also bringing his platelets down way too low. They were down to 29 several weeks ago. Whenever they have dropped too low the Dr. takes him off of his meds for a week and the platelets go back up. His last PCR showed a slight increase..1.67. He had been off of his meds twice for a week at a time in the several weeks before that test.His Dr. has now decreased his meds back to the 100mg to see if this will help. Platelets have still dropped to 51, Dr. wants blood work again next week. Dr. will consider changing meds if problem continues. My son does very well with the Disatinib as far as side effects..He has none! Has anyone else had this problem with the meds causing too low platelet count? Any info or advice would be appreciated.

Edited by janlyn28, 13 September 2016 - 09:08 PM.

[CMLParent]

Hi,

My son was also diagnosed in Jul 2015. Was there a reason they went right to dasatinib and not start with imatinib? TKIs in general can cause issues with Platelet function and Dasatinib seems to be one of the more pronounced.

http://www.bloodjour...so-checked=true

We personally have not had issues with this as we are also on Dasatinib. Perhaps someone will chime in with some personal experience.

Has the Doctor talked about selecting a different TKI to see if the platelet side effect is less pronounced?

We deal with WBC count suppression as our side effect but everything has been able to stay above a threshold that would require a holiday.

[janlyn28]

CMLParent
Im not sure why they went straight to the Disatinib. My son's levels were very high at diagnosis, so maybe they thought the imatinib wouldn't be strong enough?? I do remember his Dr. had to send in paperwork to the insurance to show them why he wanted to use the disatinib, since there were other meds that were cheaper that the insurance thought they could use. But his Dr. really wanted him on the disatinib. And yes, he is talking of switching him to a different TKI if platelet issue continues. I think the Dr. has mentioned nilotinib.
Thankfully all the other blood counts have stayed very good for my son. He just recently had another biopsy and the FISH test and all the other tests they did came back with good results...all chromosomes looked normal! So thankful and praising God for that!!

[CMLParent]

What were the levels on the most recent PCR? Is he still FISH positive? Does your son's Doctor have experience with CML?

[janlyn28]

His last PCR,which was maybe a month ago, was 1.67. Up from .89, with the rise most likely resulting from the time off of meds. His FISH, which was just done a couple weeks ago, was good...everything normal. Yes, his Dr. is familiar with CML. He is a specialist in hematology/oncology.

[gerry]

Was your son diagnosed in the chronic phase?

[Trey]

This is a familiar story and many here have faced low blood counts of various types due to the combination of CML and TKI drugs.  It can take a while for the body to produce good blood cells again in sufficient quantity since the body attempts to control the cell overproduction by nearly shutting down good cell production.  Although CML is mistakenly thought to be a disease of the neutrophil White Blood Cells, it is actually a disease at very high levels in the blood making system, so it affects all cell lines (white, red, platelets).  Once the TKI drug slows down the leukemic cell production the body must restart the good cell production, and that can take some time.  So overall the real answer is that time (a year or two -- sometimes more) usually fixes the problem in most patients.  In the short term the drug breaks help, but at the expense of response, so these patients tend to have slower responses.  But that is not serious as long as there is an acceptable level of continued response, and your son has a zero FISH so has done well.  But it can still be a juggling process for a while.  Platelet drugs can be used but I would only use them if absolutely necessary to achieve or maintain an acceptable response.

 

Is your son a child?

Edited by Trey, 07 August 2016 - 09:02 PM.

[janlyn28]

Was your son diagnosed in the chronic phase?

My son was diagnosed in late chronic phase.

[janlyn28]

This is a familiar story and many here have faced low blood counts of various types due to the combination of CML and TKI drugs. It can take a while for the body to produce good blood cells again in sufficient quantity since the body attempts to control the cell overproduction by nearly shutting down good cell production. Although CML is mistakenly thought to be a disease of the neutrophil White Blood Cells, it is actually a disease at very high levels in the blood making system, so it affects all cell lines (white, red, platelets). Once the TKI drug slows down the leukemic cell production the body must restart the good cell production, and that can take some time. So overall the real answer is that time (a year or two -- sometimes more) usually fixes the problem in most patients. In the short term the drug breaks help, but at the expense of response, so these patients tend to have slower responses. But that is not serious as long as there is an acceptable level of continued response, and your son has a zero FISH so has done well. But it can still be a juggling process for a while. Platelet drugs can be used but I would only use them if absolutely necessary to achieve or maintain an acceptable response.

Is your son a child?

My son is 22 yr. old.
Thanks for this input and explanation. Another couple questions but first here is a run down of his history...

At diagnosis beginning of July and still at end of September...PCR 100 dasatinib 100mg...
At this time was switched to 140mg dasatinib
1st of November..PCR 31.8
1st of December..PCR 3.4(these results were from a different lab. Lab that was usually used showed somewhat higher.)
March..PCR..1.8
May 3..PCR .89 This was when he was taken off of meds first time for low platelets.
June..taken off of meds 2nd time
July 7...PCR 1.67 also the 3rd time off of meds
July 20..biopsy...zero FISH

Now with this look at his history...would switching meds be a good thing to do? Or would he be ok to stay on desatinib awhile longer with the breaks,when needed and give it more time? I read somewhere else where a patient who had the side effect of pleural effusion had certain days of the week/month that she did not take meds to try to stave off the pleural effusion longer. Would/could that be an option for the platelet issue? Instead of being off a whole week at a time? His Dr. is unhappy with his PCR results and I'm getting the impression he thinks my son should've reached .1 by now. Although they have told us before that they want him to that point between 12-18 months post diagnosis. Since the disatinib has been working so well for the CML and he has had no other side effects I hate to see him have to change but I know he can't keep having such low platelets either. I have found it interesting on here reading about the "turtles"...realizing that everyone doesn't reach the goal as quickly as others. I'm not sure his Dr. sees it like that tho.
We have already talked transplant and we do not want to go there if at all possible. I guess we're just feeling a little confused right now.

Now on a side note..I'm just curious...are you a Dr? Researcher? Fellow CMLer? I've noticed you really seem to be very knowledgeable and people refer to you quite often!! I also appreciate your advice!! Thanks!!

[Trey]

Your son is doing well, so no change is needed unless he cannot shake the pleural effusion issue.  If it persists another 6 months I would switch, probably to Tasigna.  It may even work better.  No TKI drug works exactly the same for any two people.  But the zero FISH (CCyR) at 12 months means he has done just fine so far, especially considering the drug breaks.  Oncs often have unrealistic expectations.  No matter how well the patient does, the Onc wants better results.

 

I am just another CML patient.  No more.

[gerry]

Trey is a fellow CMLer, who likes to do a bit of research in between his games of golf.

 

Read page 49 of the NCCN Guidelines https://www.nccn.org...l/index.html#50

"One goal is to reach CCyR within 12months." Not sure what your doc is reading.

[janlyn28]

Your son is doing well, so no change is needed unless he cannot shake the pleural effusion issue. If it persists another 6 months I would switch, probably to Tasigna. It may even work better. No TKI drug works exactly the same for any two people. But the zero FISH (CCyR) at 12 months means he has done just fine so far, especially considering the drug breaks. Oncs often have unrealistic expectations. No matter how well the patient does, the Onc wants better results.

I am just another CML patient. No more.

Maybe my last post seemed a bit jumbled(my thought and questions felt rather jumbled), hence the misunderstanding. My son is not dealing with pleural effusion(that was someone else I had read about and how they took they're meds to stave it off). My son is dealing with low platelet counts. Would you still suggest same course of action? Tasigna is the med the Dr. has mentioned he would switch him to.

Thanks for all the research you've done..as Gerry mentioned..in between your games of golf!!😁😁 lol... and for sharing it with the rest of us!!

[janlyn28]

Trey is a fellow CMLer, who likes to do a bit of research in between his games of golf.

Read page 49 of the NCCN Guidelines https://www.nccn.org...l/index.html#50
"One goal is to reach CCyR within 12months." Not sure what your doc is reading.

His Dr. did want him to CCyR by 12 months..which is the second hurdle they said my son needed to cross, which he has done now. But it's his PCR that he's not happy with.

I'm glad Trey has had time to do research in between those golf games!!😁😁 It sure is appreciated!!

[CMLParent]

Are the platelets still dropping or are they stable at 51K? How fast were they dropping? How do they change when your son takes the Dasatinib holiday?

[janlyn28]

On July 7 his platelet count was 112. 2 wks later it was 51. He just had bloodwork again this morning so we will see what has happened with it in the past week. When he has a med holiday it goes right back up usually to 100-/+. He has been on the lower dose of disatinib for about a month now.

[Trey]

Same answer for the platelet issue.  If he can at least stay above 50 in the short term and hopefully nearer 100 PLT then no change is needed since he can likely work his way through this and it should get better over time.  But if he cannot sustain 50 PLT or better he should switch.

 

There is no magic answer about timing for switching drugs.  A patient can do that for any reason at any time, or even for no reason.  So if he would like to switch now there is nothing wrong with that.  He could go back to Sprycel later if he wants.

Edited by Trey, 09 August 2016 - 07:39 AM.

[beno]

My platelet count went down to 12.  I received a plasma infusion and took a ten day break from Sprycel (100 mg) and it started climbing.  It has stayed between 110-160 since.

[CMLParent]

What is the frequency of the CBC? I would continue on with the 140MG and see if it stabilizes with more frequent CBCs to monitor.Clearly the 140MG dose of Dasatinib is working for your son as the disease was trending down nicely. In our case the WBC counts started trending down and we were obviously concerned but they stabilized at a low but safe level. I would stay the course and increase frequency of CBC. Our bodies produce many more platelets than we need so if he stabilizes at 50K you will be well above transfusion criteria. In pediatrics the transfusion criteria is 10K. It's a tricky spot your in because it sounds like from the history you gave your son needs the full dose of 140MG to move the disease. If staying the course ends up with too much risk a switch as others have mentioned could be considered.