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CML diagnosed 26/2/15. On imatinib. Advice please - low Testosterone- possible TRT therapy with cml ? Help !

Dear all .  I have never posted on this sight to date but have been following for some 5 years now.  Diagnosed 2/2015.  I am on Imatinib with MMR  at six months .  My PCR is   0.018 - all bloods stable.  The only “ blip “ is my testosterone level which is low - I am apparently right at the bottom of the normal range.  My clinic is at Hammersmith hospital -  I have discussed this issue with 3  different consultants in the clinic including professor Jane Appleby.  They all agree that going onto TRT therapy with CML is not a problem. 

My GP agrees that I present with all the symptoms of low testosterone -  low mood, no sex drive, weight gain. no stamina !  That said it’s easy for me to put this down to age - I am 60 - also putting it down to the cml. However the T level bloods tests have been constantly low over the last 12 months 

HELP - I am at a loss with it all - on the one hand I could start TRT therapy - on the other hand like all drugs their are possible side effects - are their any men on this forum that have come a cross this ?  Of course I have looked up loads of stuff online - and their have been documented cases of men being on imatinib  and then get low T levels - but to be fair their is no definitive research in this area. 

Any experience - suggestions - or advice would be most welcome 

thank you 

philip 

 

 

 

 

Philip, assuming that you are still on Imatinib 400mg, and have had a low level of CML for a prolonged period of time, at least a year, or so, the best thing you can do is to begin reducing your TKI dosage.  When CML has been at a low level for an extended period of time, it typically only requires a minimal TKI dose to control it.  TKIs are toxic medications and the less we take over the longterm, the better off we are likely to be.  Six weeks prior to your next quarterly PCR, reduce to 300mg.  Hopefully this will suffice to eliminate the monthly tests that most oncs want you to do during dosage reduction.  You shouldn't have any problem getting down to 200mg in short order without it having an adverse effect on your CML level.  Your onc may need some convincing.  Many CML patients, if not most, take far more TKI than they need.  Don't allow yourself to be one of them.  Posting your CML history with dosages and PCR reading/dates is always a good idea.

Effect of imatinib on male reproductive hormones in BCR-ABL positive CML patients: A preliminary report: https://journals.sagepub.com/doi/full/10.1177/1078155213500686

Buzz

Hi Buzz 

thank s for info - I am indeed on 400mg a day of imatinib .

the link if very useful. Masks thanks 

philip

Philip, please continue to keep us informed as to your onc's opinion; my own onc was staunchly against dosage reduction but I was very persistent and not taking no for an answer, after almost five years on Gleevec.  Still ended up with a serious medication induced health problem after dosage reduction and cessation, going on four years.  Again, posting your Cml history, dosages dates results is always a good idea.  I would very much like to see it.  It adds to the knowledge base for all of us.

Thanks,
Buzz

Hi Philip

I have been on testosterone replacement for over 30 years, and was on imatinib for 11years. I had a testicular cancer aged 30, and after that needed TRT. My CML diagnosis 20 years later is likely linked to the radiotherapy I had aged 30. I was on 400mg imatinib for 10 years, then dropped to 200mg for a year, and have now been in treatment free remission (TFR) for over 18 months. Can't really say whether the imatinib and TRT interacted as they were always together for me. I followed the protocol of the UK Destiny Trial for reducing the dose. The latest results of this trial are described by Prof Clarke here  which is a talk from the CMLSG Patient Day in 2019. The new piece at the end about how results on half dose are a predictor of whether a TFR attempt is viable is I think really useful. I found the side effects I had (fatigue, cramps, occasional gastric issues, occasional eye bleeds) all stopped when I reduced to 200mg.

I hope this is useful

 

Alastair

Alister 

Many thanks for your input - quite interesting that you have been on TRT for so long - although the circumstances that dictated your treatment were not good.

The last consultation at Hammersmith Hospital - the Dr did state that we could be looking at reducing my dose  - just gathering some info - 

Philip

 

 

Hello, Philip. How’s it going now? Have you managed to solve your issue? My brother currently has a similar situation. He has an extremely low testosterone level, so I have no idea what to do. Could you advise us on a good clinic? We’re currently located in CA. My friend has advised me on this supplement Testodren Primegenix. Tbh, I heard about it a few months ago. I saw its advertisement while searching for some information on low testosterone levels. So, guys, we’ll be waiting for your advice and suggestions. Thanks in advance for your help. We highly appreciate it. https://testodrendim3x.com/