6 replies to this topic

[cmlwife1403989240]

My husband was diagnosed in March (at age 32) with a WBC count of 317k. The next week they were up to 450k. They thought he might be in blast crisis but the BMB proved otherwise showing 2% blasts. His diagnosis was Chronic Phase CML. He was put on hydroxurea for 4 weeks and started 100mg Sprycel. The doc said Sprycel was stronger and she wanted him on that, so he went with it.

Immediately after starting the sprycel, his WBC, RBC and platelets crashed. (His Platelets at diagnosis were normal at 188)  He was bordering on needing a transfusion with a HCT of 24. His platelets went as low as 50. WBC to 1.6 or so.

He was taken off Sprycel the first time with the doc saying that maybe it was the combo of Sprycel and the hydroxurea (which he had just stopped) and that he would tolerate the Sprycel better without the hydroxyurea. . We waited 2 weeks for his levels to normalize, they did, he restarted the Sprycel and his levels depressed again, although his RBC's were slightly low, but ok. It was mainly his WBC and Platelets.

Stopped the medication again, 3 weeks off and he has now restarted at 50mg. He's been on it for 1 week now... he has a doc appt tomorrow and we will see what his numbers are doing. My fingers are crossed that this dose isn't going to crash him.

He has not had a PCR or FISH since diagnosis, and i just looked at his BMB result and all it said: (not helpful)

BCR_ABL SPECIMEN DESCRIPTION	BLOOD
BCR_ABL RESULT	SEE COMMENTS
Positive (b2:a2)
BCR_ABL INTERP	SEE COMMENTS
BCR-ABL mRNA was detected.
BCR_ABL COMMENT	SEE COMMENTS
The size of the PCR product is consistent with the typical breakpoint seen in chronic myelogenous leukemia that results in production of the p210BCR-ABL transforming protein.
BCR_ABL CLINICAL INFO	SEE COMMENTS

I'm thinking the actual results are in the comments, which are not on the lab results I can look at online.  He's going to ask his doc about a repeat PCR/FISH tomorrow since he has spent more time off meds than on them.

Anyway, all that to ask my question: Do some people react like this to the medications and then continue on to eventually tolerate them? Will he build tolerance at the lower dose and then be able to slowly increase it? If he can't tolerate Sprycel at all and has to switch to something else, is there a chance he will even be able to tolerate those? He is very strong and healthy and I was just shocked that the magic pill knocked him on his ass like it did...

Thanks for your help!

[reedgirl]

CML wife...we have something in common....we are both wives of CMLers on this board.  My husband also experienced the same situation as yours.  After diagnosis he was taken off med's due to low blood counts.  It took his counts 4 weeks to recover before being able to restart med's.  He started a different med and was taken off that due to high liver counts.  At 6 months after diagnosis he was off med's more than he was on.  Finally at 8 months he was put on Sprycel, 50 mg, and seems to be tolerating this drug the best.  He is now up to 70 mg and I suspect will be bumped up to 100 mg after our next visit end of July.  It has been one year since his diagnosis and is finally able to stay on a medication for treatment.

To answer your question....yes it is very common to have a drug break and restart at a lower dosage.  Browse thru this board and you'll find many others who have gone through the same situations.  Trey has a great link for newbies that will answer the majority or your questions.  Always get full copies of any reports, labs or bmb.

All the best to you and your hubby...you've come to the right place for support, answers, and encouragement!

Audrey

[PhilB]

Hi cmlwife,

The  test you have there looks like a qualitative PCR rather than a quantitative one ie they just looked to see if they could find the BCR-ABL (they did) rather than trying to measure its level.  It's not a big issue that you don't have a PCR level at dx as early on it's more important to track the FISH numbers.

As Reedgirl said drug breaks early on are not uncommon as his 'good' stem cells may have gotten lazy from not needing to do anything whilst the bad guys were doing all the work.  With luck they will start to wake up and take up the slack.  Much more rarely the good cells may have problems dealing with the drugs and then you end up with a tricky juggling act to find the balance between zapping the bad guys and not giving the good guys too much of a headache.  We have several people on here who have been juggling for quite a while who will tell you what a pain that can be, but the important thing is that they're still here and still juggling.

Phil

[Trey]

He should NOT have been on Hydroxyurea and Sprycel at the same time.  That was the initial problem.  At this point the low counts are not so unusual, and many work through that over a few months.  Actually his counts are not that bad compared to some here.  The on/off cycles at low dosage will probably work, and get him back to what we call "CML normal", which will be living with blood counts that remain somewhat low but we still can function normally.

[cml-wife]

Thank you all! Gives me hope. The doc he saw this morning said that she wants him to stay on 50mg, and gave him another PCR test and a few more tests (I am not sure what else... I wasn't there) so we will see. I will keep you updated.

Strangest thing, I can't log in to the account I made last night, and had to make a new one. I reset my password THREE times and it won't take any of them.

[CallMeLucky]

Sprycel seems to be very strong and that is good, but has some fallout to deal with sometimes.  If you figure a good majority of his white blood cells were leukemic and then you introduce a drug like Sprycel which quickly wipes them out, the counts are going to drop drastically.  Now his body has to produce new healthy cells to replace the ones that have been eliminated.  That process can take a while.  We have seen a number of people on this forum who have had to deal with this.  Often, it will eventually work out and the counts stabilize.  For some it happens faster than others.

[cml-wife]

Thanks. That's what we are hoping for. We will see what has happened in the last week when he gets his lab results back. I am very anxious to see them.