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Dealing with CML

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Good morning everyone,

It's kind of crazy how things can change so dramatically. I was a very active athlete playing multiple sports through high school and college and after an ankle injury at 25 years old was told that I had cancer. It's now been 7 years of gleevec 400mg and since starting my BCR-ABL has been 0.00%. However, recently my doctor has decided to lower my dosage to 200mg and I have noticed a slight increase in BCR-ABL to 0.03% as well as some increases in creatinine. This is a little alarming in as my tests have always been great and normal but with the reduction in medication I have noticed some slight decreases in kidney function. Has anyone else had these issues? My doctor doesn't seem to think anything of it and says the numbers are still considered :normal". It's at times frustrating not knowing what's going on with your own body but I try to just brush it off and keep going. Another question is has any men on this site bee able to have children while on gleevec? I have recently gotten married and my wife and me are concerned about issues having children.

Rich, David knows more about this than I do, but there have been several threads in the past on fathering children on imatinib, and the consensus is that it is not an issue, Much simpler than if a lady has CML and wants to conceive, although I believe that has been done successfully as well, although not without risk. 

Alastair, you're absolutely right. The general consensus with clinicians that are leading in this field is that fathering a child on imatinib is safe. The jury is still out on other TKIs, but the evidence seems to strongly lean towards it being OK for the father.

It's very different for the ladies - and much more complicated. But luckily for us guys things really seem to be fairly simple, at least on imatinib.

This is a video worth reading (Jane Apperley, Hammersmith - probably the leading authority on CML and fertility)

https://www.cml-foundation.org/index.php/science-education/scientific-ne...

And more here:

http://www.cmladvocates.net/download/cml-horizons-conferences/cml-horizo...

https://vimeo.com/220448525

http://www.cmladvocates.net/download/cml-horizons-conferences/cml-horizo...

https://vimeo.com/220448602

 

David

Sorry this took me awhile to respond to - I wanted to get some papers together.  Yes, Gleevec can raise creatinine and tapdance on your eGFR.  When it happened to me in 2010, there was only one case study, involving acute renal injury.  My own case, as it evolved, paralleled the findings slowly coming out in research.  I started having high creatinine levels show up (1.5) after about 4 months on Gleevec, having been normal all my life.  I had a full (except for biopsy) nephrology workup and there were no findings of anything wrong; the differentiated diagnosis was that imatinib had "some unknown effect" but that there seemed to be no worrisome pathology.  I see a nephrologist twice a year, my creatinine stabilized at 1.0 to 1.2, and my eGFR stays around 50.  I also take calcitriol and vitamin D for secondary hyperparathyroidism, which was subsequent to the Gleevec kidney effects.  You should have your parathyroid/protein/vitamin D levels checked.  At any rate, bottom line is, yes it's the Gleevec, but PROBABLY you have nothing actually wrong with your kidneys.  The high creatinine is supposed to be reversible when you get off Gleevec, but it didn't happen for me. ( I'm on Sprycel.)

 

Here are the relevant papers for you to read:  "Imatinib Increases Serum Creatinine by Inhibiting Its Tubular Secretion in a Reversible Fashion in CML" by Vidal-Petio et al in Clinical Lymphoma, Myeloma and Leukemia, March 2016.

"Imatinib treaatment duration is related to decreased estimated glomerular filtration rate in CML patients by Marcolino et al in Annals of Oncology, Sept 2011.

"TKIs Have Kidney Effects in Long-Term CML Treatment" by Cancer Network Staff in CML, Hematologic Malignancies, Leukemia and Lymphoma, July 31, 2015.

Thank you for your response. My doctor has noticed that for the first 7 years of gleevec my crestinine levels have been between 1.0 and 1.3, however, over the last month they have jumped to 1.54 and then back down to 1.4. The doctor has notified me that all other testing (vitamin D, thyroid, ultrasound, etc) shows my kidneys as being fine. But again the numbers make me uneasy. The only recommendation I have been given is to increase water intake to help the kidneys flush the wastes. It's just crazy that this all started when they lowered the gleevec dosage...