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To proceed with Allo SCT or no?

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Greetings All.

My boyfriend (age 28) has been diagnosed with CML on 30/09/18. He has been taking Nilotinib 200mg ever since then up till 16/10/18.

On his doctor's appointment on 16/10/18, his bad white blood cell is still at 2% & doctor suggested with Allo-SCT

He has now moved from Chronic phase to Accelerated phase. Meanwhile, he is now taking Nilotinib @ 400mg.

Would appreciate your comments!

 

Hello Poppy,

My first comment is that it seems a little too early to tell if his CML is progressing from what you've said so far.  When you said his bad white cells are at 2%, do mean blast cells or some other kind? Two percent blast cells isn't that high and usually indicates chronic phase. Maybe there was a misunderstanding about that number.  Twenty percent blast cells is more worrisome and can indicate a more advanced disease.

Do you think his doctor is a CML specialist?  The reason I ask is that CML is a rare condition and many doctors don't have the expertise to treat it with the most current protocols.  Unfortunately, patients sometimes suffer from poor advice from a doctor not well acquainted with up to date CML knowledge.

It's my understanding that controlling CML with TKI drugs like nilotinib is generally safer than a stem cell transplant.

My second comment is that you should ask for copies of all of his diagnostic reports, such as FISH, BCR-ABL1 by PCR, cytogenetics, complete blood counts, etc.

My last comment is that before undergoing SCT, a second and maybe third opinion should be sought out.  Hopefully by a CML specialist.

I hope this helps,

Kirk

Poppy,  I'm wondering if he's been taking the nilotinib twice a day?

Thanks, Kirk

I would get a second opinion from a specialist. I was diagnosed borderline accel/ blast phase.  Prior to the availability of a specialist they wanted to transport me to an advanced cancer center. Fortunately for me , the ONC said that even though borderline, when taking all other factors into account, 600mg. Imatinib was the way to go. I went home, back to work. He did full up tests every 3 weeks for 6 months and then another marrow biopsy. Fortunately no mutations, no blasts and PCR of .3. It was a tough 6 months, but MMR at 12 months and  CMR at 30 months followed. For now, the Devil is caged. I believe with the wrong Doctor, things would have been much different for me. I wish for your boyfriend the best possible outcome.

Hi Kirk,

 

Thanks for your reply.

2 weeks ago, his levels of Basophils was at 27%.  The specialist advised to stop taking his medication (which helps to bring down the white blood cells). i can't remember the name of the medication. His recent visit (16/10), it has been reduced to 2%. She told us that it should be entirely gone by now since he had stopped that particular medication.. As such, she suggested Allo-SCT & to increase his dose of Nilotinib to 400mg from 300mg. (He is now taking 2 tables, 2 times a day) His next visit is in two weeks' time (30/10). His siblings will be going for DNA typing. 

 

Hi Poppy,

According to my lab reports, the normal range for basophil% is 0.2 - 1.0%.  So a result of 2% doesn't seem alarming to me.  As it's a percentage, the value is affected by the other types of cells it's being compared to.  I wouldn't expect it to be normal yet at this early stage of treatment.

As a comparison, in 2012 I was also diagnosed at the end of September.  My basophil% was 2% and was flagged as high on the 10/19/2012 report.  My doctor never suggested SCT to me because my labs weren't normal yet.  In fact, most of my white blood cell percentages were abnormal three weeks after my diagnosis.

Was he on Hydrea (hydroxyurea) when he was first diagnosed?  I've heard opinions that Hydrea isn't a good idea as it's an indiscriminate inhibitor, and shouldn't be used except in cases of dangerously high white blood counts.

If he was diagnosed and started therapy only three weeks ago, I'd be wary of going to SCT so soon.  It takes many months for the bone marrow to recover and for the TKI drugs to do their work.  If it were me, I would insist on a consultation with a CML specialist before even thinking about SCT.

Unless there's more to this than we can see at this point, my opinion is that his doctor isn't allowing time for the normal treatment protocol to work and is pushing SCT for some unknown reason.

I'll leave you with Tbrands words, "I believe with the wrong Doctor, things would have been much different for me."

Kirk

I would be very wary of SCT, the chance of survival is not "that" great and then the chance of survival again at one year is also not that great.  You also have to be concerned about GVHD which can last an entire lifetime and there is always the chance that the CML will come back (which it tends to do with SCT).  CML is extremely difficult to cure with a SCT.  

 

The one thing missing here is what his PCR results are and also what is his blast count.  Also, has a mutation test been done?  Depending on where you are with those two, you may qualify for the ABL001  trial which has had success with treating CML in accelerated phase.

Hi Kirk,

After 2 months (diagnosed on Sept) , his bloodwork is now normal. His basophils reduced from 22% to 2% then increased to 4% and then decreased to 0.7%. Finally, good news after several weeks. He is currently taking Nilotinib two tablets twice daily (400mg). So far the only side effect he faces are fatigue & rashes here and there. He has also changed his diet by downing salads & fruits &  apple+beetroot+carrot+celery juice. His PCR test will be taken in Dec. 

Thanks for the update with the good news!

Hi All!  His first PCR test showed 12% (he was on 400mg twice daily). We were told that 10%-20% is the warning zone and anything that falls below 10% is in the safe zone. Now his dose has been reduced to 300mg twice daily. His blood counts are normal, except for his platelets which are low. His enlarged spleen had went back to the original size & with Nilotinib, his side effects are just fatigue and dry skin, which are manageable. With PCR test @ 12 % (on 400mg twice daily) Should we be worried for the next PCR test now that he is on 300mg twice day? Also, it has been two weeks that his left calf feels like an ache. It gets better if he kept moving. But feels achey when he stands, 

I would not be overly concerned about 12% at this point.  I was at 23% after 3 months (which is not good), 1.8% at 6 months, and still going down.  Not everybody responds the same.  I would look further into it if he was not close to 1% at his next checkup.  It also depends on whether he has been taking the medication regularly (which is hugely important) and without planned breaks.  

As you know there are other TKI's available if one is not working for him.  If he is under 1% at his next checkup then he is perfectly within the guidelines and I would not change, especially if he is having minimal side effects.