7 replies to this topic

[MACELPatient]

So I thought I'd open this discussion in here since it makes more sense to have it a more active forum as opposed to my quiet "Rare Leukemia's"

Long story short, my libido has been almost non-existent the past 8-10 months or so and I had been wracking my brain as to a reason so I decided to to a search for Testosterone and Gleevec and it came up with s study done on mice that showed a link to T levels and Gleevec therapy.

Here is the link to the study plus the abstract of it

http://www.ncbi.nlm....les/PMC3153699/

Abstract

Background:

Treatment of cancers with cytotoxic agents such as tyrosine kinase inhibiting drugs often, but not always, result in transient to permanent testicular dysfunction. Germ cells are important targets of many chemicals. Most of the drugs are genotoxins and induce irreversible effect on genetic makeup. These mutagenic changes are proportionally related to carcinogenesis. This is alarmingly dangerous in youth and children, since these effects last longer, affecting fertility or forming basis for carcinogenesis. There is paucity of reports on planned studies of imatinib on the testicular function. Hence, the study was planned to assess the effects of imatinib on biochemical markers of testicular functions in male Swiss albino mice.

Materials and Methods:

Male Swiss albino mice were treated with imatinib and sacrificed at the end of first, second, fourth, fifth, seventh, and tenth week after the last exposure to imatinib. The testis were removed, weighed, and processed for biochemical analysis.

Results:

The intratesticular testosterone level was significantly (P<0.001) reduced in treated groups and severe effect was observed on week 4 and 5. The intratesticular lactate dehydrogenase (LDH) level was significantly increased by imatinib in all treated groups up to week 5.

Conclusion:

Imatinib does affect testosterone and LDH level significantly, but this effect is reversible once the drug is withdrawn. This finding may help the clinicians to plan and address the fertility-related issues in young patients of reproductive age who are being treated with imatinib for gastrointestinal tumors and chronic myeloid leukemia.

So after reading this I decided at my last appointment to bring this up with my NP/DR.  Not the easiest thing to talk about but they decided to run a test for T and it came back low.  So my question to all you CMLers, have you had any similar issues and if so, what have you done?  I just had to change my primary care physician at the beginning of this month due to a change in insurance so I have not been able to reach out to them to open a dialogue about this as well as my general health.  My thoughts vary from trying a reduced dosage of Gleevec 100mg vs 400mg to testosterone therapy. 

[Trey]

That lines up with other studies on the subject. 

The study you reference "Male Swiss albino mice were treated with imatinib and sacrificed ...The testis were removed...."

Sounds like and ancient Mayan ritual on top of the Chichen Itza pyramid.  Disturbing.... 

http://en.wikipedia....ki/Chichen_Itza

The good news is that when therapy is stopped the low-T reverses.  So decreased dosage probably has a halfway effect.

[CallMeLucky]

So a couple of things with this.

I believe Gleevec does lower Testosterone, when I was on it I discussed with my PC if low T could be causing the fatigue and muscle pain.  We ran a blood test and I was on the very low end of normal.  My PSA was also elevated so I went to urologist who reran the testosterone first thing in the morning (it is important to have the test run first thing in the morning).  It was not what I would call a huge difference but it was definitely higher.

Not too long after I switched to Sprycel, I have not had my testosterone rechecked but so far, my PSA has thankfully come down and I don't have the systems of low T anymore.

Other things that affect testosterone are lack of exercise, lack of sleep, stress, poor diet, age.

So in the department of things to do, you could get testosterone supplementation but you could also try lifting weights, getting a good amount of sleep and eating clean.  Then if you don't get any improvement you could supplement.

Low dosage would likely reduce the impact if it is the Gleevec causing it, but are you sure lowering your dosage is something you want to do?

I would go see an endocrinologist, preferably one who has an understanding of what Gleevec is.

Best of luck.

[MACELPatient]

So I had my T levels checked again and they came back normal.  Kind of surprised me and I am wondering if it was a faulty test the 1st time or was interpreted incorrectly.

They also checked for Lyme, Glucose, and Thyroid abnormalities.  They all came back normal.

I still have not gotten myself onto a workout regimen,  I need to get up off my azz and do this.

Will schedule a follow-up with the Dr to see what steps to take next.

[TeddyB]

Hope you are well ETauntonMA.

My libido has actually been very good since starting the Gleevec, even the first months, no idea why.

To your libido problem, maybe it has to do with the pysocological effects of getting cancer, maybe it will get better over time?

I try to work out 2 times pr week, and i go for daily walks, also i eat a lot of healthy food, but still enjoying myself in the weekends.

I thought id post a link with some suggested foods regarding the libido issues, but it contained some language/words that might not be suited for everyone, so if you want it, let me know and i will private message it to you

The bottom line, for a man, these foods/drinks were good:

Coffee

Oysters

Chillies

Bananas

Salmon

Pork

Cherries

Onions

Red wine (Only 1-2 glasses)

Porridge (Who would have thought)

Teddy

[CallMeLucky]

I just had mine checked again and the were "normal".  I think this is something that fluctuates, especially as we get older.  Libido is a tricky thing and while the Gleevec could have an impact, there could also be a host of other reasons.  Stress being a huge killer, and let's face it living with cancer is stressful.  I don't like to blame everything on stress but it does have a major impact.  Frankly I don't think our bodies were built to live in the kid of world we are living in - Technology moves faster than evolution!

I know how hard it is but see what you ca do in the exercise dept, particularly lofting weights if you a re trying to increase Testosterone (keeping in mind that increasing T in and of itself may not resolve libido issues).  It doesn't have otbe 6 days a week, try getting in 45 min of weight lifting three days a week and see how that does.

Best of luck

[MACELPatient]

Got the physical results in the mail as opposed to the "over the phone" answers and they are far from "normal" to me even though they fall within the range.  They are on the low end so maybe I was having a good week, lol.

[MACELPatient]

So it's been about 6 months since I made this thread and I though I'd give an update.  As far as "T" levels go I have not had them checked since that time but I can posotively say that they are not low, if ya catch my drift.

 

I've changed my lifestyle over the last 45 days and started eating healthier, going with more salads and proteins and less grains and just about zero processed foods and sugar.  I still allow myself to indulge on a rare occasion.  I've lost about 20lbs in that span of time and I feel better than I ever have.

 

I still need to get myself to a gym and my plan is to do that in the Fall.  I need to adjust my schedule so I can work it in.  I've been using a couple wonderful phone apps too to help me along.  The 1st is MyFitnessPal and I keep a daily journal of what I eat.  The 2nd is 30DayChallenges, which I started 3 weeks ago doing an "Abs" challenge.  Huge changes there.

 

I hope everyone is hanging in there.  My CEL is definitely not in control of my life any more.  I rarely even think about it.  I take my daily 400mg Gleevec and go about my business.