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TKI Drug Impacts on Hormone Function

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#1 Trey


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Posted 20 April 2014 - 10:13 AM

There have been a number of discussion about unusual side effects of TKI drugs over the years.  Information is coming together which may shed some light on the issues involved.  It is possible that numerous unusual side effects from TKI drugs are related interference with hypothalamus, pituitary, adrenal, thyroid gland function.  These are the glands which are at the center of controlling many body functions.  One study found that more than half of Gleevec patients experienced glucocorticoid deficiency, meaning the adrenal glands are not producing enough cortisol, and this has downstream impact on the thyroid.  See link at bottom.

This imbalance in the hypothalamus-pituitary-adrenal-thyroid axis (meaning these glands are tied together in function) can lead to a host of side effects we have complained about, including brain fog, fatigue, how the body deals with internal temperature (both feeling cold and night sweats, which are opposite extremes), and even sunken eyes or puffy face, just to name a few of the side effects.  A cortisol (glucocorticoid) deficiency and resulting hypothyroidism (low thyroid function) is an under-appreciated side effect which more than half of TKI drug patients have experienced according to the study cited below.  Since the production of cortisol is stimulated by the hypothalamus and pituitary, it is difficult to know where this imbalance originates.  The feedback loop among these glands means that a dysfunction at one point can upset the entire system.

There has been little appreciation for this issue among Oncs and GP doctors.  Maybe more of us should have an ACTH Stimulation Test, which tests pituitary stimulation of the adrenals, along with the more common thyroid test.  It is possible that the dysfunction in both the hypothalamus or pituitary can be causing the downstream effects of low cortisol and low thyroid function, which in turn result in a host of side effects.


To help understand the interaction among the glands:


#2 Happycat


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Posted 20 April 2014 - 05:13 PM

Thanks for posting this, Trey!  I've been convinced I have some sort of thyroid issue since being on Gleevec, but the thyroid tests always come back normal.  I will definitely ask my hematologist about this.


#3 Hokieman


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Posted 20 April 2014 - 07:31 PM

Trey, Thank you for posting this information. I'm 17 months in this CML journey and overall responded well to Tasigna, 300 mg two times per days. However, lately in spite of exercise and reasonable diet, I've put on 25 pounds, and developed problems with breathing. At times, I feel I am smothering. My stress test shows no blockage and most of the time my blood pressure in almost perfect. I turn 60 soon so maybe this is just a part of aging. Any suggestions?? Do you think my problems cold be related to a hormonal imbalance? If so, what test should I ask my hematologist to consider. Thank you for any advice.

#4 IGotCML


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Posted 20 April 2014 - 09:39 PM

I am also on Tasigna, same dosage as you for just over a year.  I gained around 10 lbs extra weight over the winter months even though my diet and caloric intake is the best as it has been my entire life (I am 45).  It is usual for me to gain 3-5 lbs over the winter, but I haven't gained 10 lbs over a few months since I was 24 and just out of college with no exercise and eating whatever I wanted.  I am not concerned at this point because I have started to lose it with more outdoor activity in spring.  However, I am wondering any impact that Tasigna is having with my hormone functions and overall metabolism.

#5 Trey


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Posted 21 April 2014 - 05:04 PM

Tests could include ACTH Stimulation Test, cortisol levels, and thyroid T4 and T3 tests. 




#6 CallMeLucky


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Posted 21 April 2014 - 09:47 PM

I believe these drugs can also affect testosterone, my levels dropped quite a bit after is tarted treatment. 

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#7 JLS


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Posted 22 April 2014 - 09:48 AM

I'm so upset with my cancer doctor, who by the way is considered a cml specialist at one of the top

cancer hospitals in the country. I have been dealing with severe thyroid issues for the past 6 weeks but I didn't even know it. I have never

had thyroid issues and never even knew what could happen when you do. After two weeks of dealing with extreme fatigue and unbearable

joint pain I went to see my doctor. After three hours of waiting for my 10 min visit... I left with him saying "I'm sorry your not feeling well,

but you have some sort of virus. With time you will be feeling better." I left his office in tears.

I came home angry and began searching the internet for some sort of answer.

After a few hours of searching and putting together some of my strange symptoms, (one was high cholesterol which I have never had

before). Then I found this study www.ncbi.nlm.nih.gov/pubmed/22933166. Along with many others relating to TKI's and Thyroid disfunction.

My doctor is a great doctor who deals with many subjects at the hospital, mostly working to keep people alive who have advanced

stages of the disease. However I feel very dissapointed that he did not see the correlation between my symptoms and my thyroid and

adrenal system. The study above indicates that thyroid function should be monitored during treatment.

It's just another lesson to me that no matter where I go or who my doctor is it is ultimately

up to me to monitor and figure out what is going on in my own body.

After reading more about thyroid testing I sought out a doctor who would do the necessary testing. (often times TSH levels come back normal

but that does not show the whole picture and if your body is processing the hormone levels properly)

Necessary testing includes TSH, Total T4, Free T4, Total T3, Free T3, and thyroid antibodies tested.

After two days this doctor came back with low thyroid and started me on a natural thyroid medication. I haven't felt better yet, it will take sometime

but it would have been better if my cancer doctor would have been checking and monitoring me and watching for symptoms like this to alert him

to possible hypothyroidism.

And as Trey has pointed out I now am going back and asking for the ACTH test and cortisol levels.

I would suggest anyone on TKI be diligent about having thyroid tests each time you see the doctor and to fight for treatment if symptoms arise.

#8 Sneezy12


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Posted 22 April 2014 - 12:22 PM

JLS, Could you please give us the Lab values regarding your thyroid tests, the type of Doctor who ordered them, and the name of the Natural Thyroid medication. Thank you, Frank

#9 Tedsey


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Posted 23 April 2014 - 11:07 AM

Hope you feel better soon.  I find that cancer doctors like to stay focused on curing or controlling the cancer (basically, not straying too far out of the box, if at all).  Few are interested in side-effects unless they are immediately life-threatening.  Glad you had the gumption and drive to seek this out yourself.  Now you know where to go and now so do we.  Thanks! (and thanks also to Trey for bringing up the subject).  Was it an endocrinologist that ran the thyroid tests?  As you stated, a lot is left up to us with maintaining our overall health.  Doctors are not infallible and medicine is not an exact science.  Initially, it is a huge disappointment, but we soon accept the reality.  If only we were still in tip top health and could believe this myth again...  It is a good thing you moved beyond it. 

BTW, I hope you are super-duper happy with your onc.  No matter how great the Cancers r Us centers may be, waiting hours for a 10 min. appointment is a waste of life (unless it gives you a needed break, but I can think of better ways to spend time).  That is just my humble opinion though.  If the CML is well controlled, no need to be front and center at the cutting edge of cancer "technology".  There are plenty of very worthy oncs who have offices that will not leave you waiting. 

Take care,


#10 Lbellabliss


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Posted 28 April 2014 - 09:25 PM

Hi everyone!

This post particularly piqued my interest as I too have gained a significant amount of weight on Sprycel without altering my diet and activity level. I'm so appreciative of everyone sharing their experiences. As I will be asking to be tested for these things on Thursday during my appointment for my next biopsy. 

I feel tremendously blessed to have a doctor that listens to what I want/believe and I know he will receive this well. It's best to be your own best advocate especially during times where there is so much unknown about these TKIs!

Again thank you to everyone!


#11 GerryL


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Posted 28 April 2014 - 11:00 PM

Hi Lauren,

Talk to your doc about fluid retention as well. My weight would vary by a couple of kilos as the Gleevec caused fluid retention issues with me.

#12 RayT


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Posted 29 April 2014 - 07:24 AM

Fluid retention has been a HUGE issue for me since being Dx'd and starting Gleevec 3 months ago.  My case is complicated by pre-existing CHF thanks to Chemo Tx for Hodgkins disease 30 years ago (Heart attack in 1985.) Since starting Gleevec, my weight has bounced as much as 5lbs in a day, which is VERY noticeable when you only weigh 125 normally.  These swings are in spite of militant adherence to a diet that averages 1500mg of sodium/day.  Lasix has helped even things out a bit, but I still have fairly good and really BAD days.  VERY frustrating, especially when chasing my 10yo daughter, as well as being Mr. Mom to a bunch of SWAT cops (I'm a tactical medic.)  I hadn't considered a possible thyroid cause.  One more question to add to the list when I see my hem/onc next week...

#13 Lbellabliss


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Posted 29 April 2014 - 06:55 PM

Hi Gerry,

Did you find anything that helped you relieve the fluid retention?

#14 GerryL


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Posted 29 April 2014 - 11:06 PM

HI Lauren,

I tried celery seed, which didn't do much for the fluid retention, but seemed to help the muscle cramps, so I wound up taking it for that. I didn't try dandelion tea or milk thistle as I had been warned by my pharmacist about taking anything which might impact the liver in some way. In the end my doc prescribed Moduretic which I only took when the fluid retention got really bad (every couple of days). The fluid retention would affect my blood pressure, so when I felt it had gone up I took a tablet. Anything with salt, alcohol (occasional glass of wine) and hot weather were the main things that made it worse. I thought I might have been permanently stuck with fluid retention when I stopped taking the Gleevec, but it seems to have finally disappeared after 5 months off the drug.

#15 Taylor



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Posted 30 April 2014 - 02:59 PM

Interesting! Maybe I can tie my change from being cool as a cucumber to anxiety and caffeine sensitive to hormonal issues? That would be nice :)

#16 Trey


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Posted 30 April 2014 - 07:55 PM

TKI menopause for men.

#17 Melanie


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Posted 03 May 2014 - 10:36 PM

Interesting post. My onc just ordered a slew of hormone tests on me, but it wasn't for the side effects mentioned here. My skin tone seems to be changing ... mainly on my face.  It's always a little gray, but lately it's even more ashen and at times looks more blue.  Not Avatar blue (although that could be cool), more gray blue. He really has no ideas, so he's running hormone and iron test to see if anything is going on. This article makes me wonder if it's TKI related.

Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

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