Plateau in results, need guidance

Hi Sandy!

Thanks for your reply. My son takes his medicines diligently. He does, however, have thalassemia minor trait along with CML. His Hb is 10 currently. His iron levels are also slightly on the higher side. This could possibly be the reason for his Bosutinib prescription. We are yet to visit the doctor since we just got the results yesterday.We don't have the final prescription yet.

Are there any alternative suppliments or medicines that I should look into for better results if he were to stay on imatinib for the next 3 months ?

Thanks.

Good to hear is is consistent in taking his TKi. Thalassemia is obviously a complicating factor for him. I am sure his doctor is looking at his particular needs but it will obviously be good to see him/her for a face to face consultation (not sure if this is possible given Covid restrictions?) so you can discuss the choices he has in detail. Maybe his doctor would be happy to wait until the next PCR result? 

However, you say he did take 800mg IM at one point, so was this dose the one that got him down below CCyR? (0.2%). It's quite a high dose so I assume his quality of life was affected which is why he is back down to 400mg? Nevertheless he is holding the molecular response which is good news.

In general - even if he does opt for a change in TKI - it is good to supplement his diet (hopefully wholefood/mediterranean) with vitamins and minerals. You have probably read a lot of posts here about supplementing with D3/K2 as well as Zinc, Magnesium, Selenium and Fish Oils (omega 3) Vit E, full spectrum B Vitamins. Obviously not iron. 

You might also want to take advantage of the offer from Hammersmith (Imperial College) CML experts and ask for advice in his case. See pinned post above for 'Ask About CML' email address.

Sandy

Thanks Sandy and Rosa for your quick replies.

His BCR/ABL results went from 100% to 2.6% (approx) to 0.9%(approx) on 400mg imatinib. After these results, he shifted to 800mg for a month which resulted in 0.2% but naturally caused a lot of side effects which is why we had to discontinue and shift to 400mg again. Since then his reports have been 0.2% approx.
I think he responded pretty well on 400mg but it has been difficult for him to respond after the dose change. I'm not sure why the doctor increased the dose but now the question is if we should take a chance and stay on imatinib or go for Bosutinib which obviously has more side effects and is relatively new.

ssss, at levels below 1.0, CML presents no real danger to a patient's health.  One of the biggest mistakes oncs/hemas make is to prescribe a super-high TKI dosage, when CML is below 1.0, in an effort to drive CML lower, which most often results in more danger to the patient from the TKI itself.

Typically, when in a plateau, CML will drift lower with time regardless of dosage.  Having said that, Bosutinib is known to have numerous side-effects and patients are often first started on a lower dosage to gauge their reaction to it.  if it is decided to put your son on Bosutinib it should be at a lower dosage, i.e. 300mg to see his reaction.  It may well prove that Bosutinib 300mg, or even lower, is sufficient to suppress his CML.

Please post your son's test dates and results over his 17 months of treatment.  Thanks in advance.

Buzz

Hi, I'm also have talassemia beta trait, hemoglobin around 10 (used to be around 12,5 before CML-Imatinib) and a slight increase of iron in the body. Since March, 2018 on Imatinib 400 gr. and currently getting great PCRq results (varying between undetected and MR 4,0).

To avoid a higher increase in iron I only moderate my consumption of red meat (up to 3 times per week) together with dairy and/or coffee. Mild side effects of Imatinib specially fatigue and small areas with hyperpigmentation. Hopefully, I will try a reduction of Imatinib after my March, 2022 PCR test.