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Six Years - Some Questions, a thought or two?

CML testosterone pain stopping Gleevec

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#1 roamingdoc83


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Posted 16 March 2015 - 01:46 PM

I was diagnosed in October of 2009. WBC at that time was in the high 30s, Gleevec was prescribed.

Insurance was tough, did not, do not (until Medicare) have any. Was on Cobra when diagnosed, tried to go private but 'way' too expensive (no matter the lovers of Affordable Health care, it IS NOT, as well especially if you have house payments and so forth). So after going thru my 401K and some other savings, plus having had some great help from LLS and, ultimately (as I lost a long time job just after being diagnosed and then wife extremely good job was outsourced in a large merger) having to sell our home of 18 years and move out of Kalifornia (yeah, taxation without representation is the new state motto) I decided NOT TO TAKE ANY MEDICINE. I know... but frankly I stopped caring. Too many hits.

I stopped in July of 2012 (ran out basically). I was taking a neutraceutical called Anatabloc at $120/month and upped my dosage. The product went off the market. It very much seemed to obstruct the WBC proliferation and my blood tests were normal showing no, none, rise in WBC for nearly 17 months. Ultimately, around March of 2014 I started to see a slow increase and, by June of that year, I was at a WBC of 39 and feeling poorly. Was not working in our new state and was still months away from medicare but could not afford the doughnut hole anyway... I "found" two bottles of Gleevec in a bag we all thought was empty. Then a friend (who has CML as well, rare) gave me four bottles because they dropped her dosage to 300 and she had a small stockpile. Then I applied for and received some assistance from Novartis. Was off the meds for two years total. Now taking 400mg daily.

Decided to start my own business and did so. I'm working which is helpful and we are trying to catch up.

My last count was perfect. In fact, my cholesterol, sugar, and all indicators are so NORMAL as to be disgusting (low cholesterol, really low cardiac risk factory)... so that is good. ONE COUNT WAS TOO LOW.

I do get wicked cramps from the Gleevec (we believe) and I also notice some stomach distress after taking the pill (at night, before bed, with 10 oz water and a piece of toast, buttered). If I get right to bed I don't notice the stomach - and I've had an ulcer too so sometimes one has to wonder - but about one or two nights a week I get the 'cramps' or 'charlie  horses' (such fun).

The one anomaly in my blood was TESTOSTERONE which was so very low... I mean, really low. I have been noticing fatigue, overall lethargy, lack of libido (even old folks gotta have some) and a bit of depression and thought that maybe the Gleevec was not working - normal WBC however - so I AM WONDERING if Gleevec can cause some DROPS in Testosterone production. I've always had high or high normal rates of 'free' and suddenly to have none, wow.

Do we have a 'list' of 'experienced' side effects here in the forum? I mean, not the ones listed by Novartis or pharms but those reportedly (yeah, anecdotally) by we afflicted ( ;^)  Does anyone else, male that is, note a drop in testosterone?

Is there a known connection between Gleevec and such a happening? Wonder if I dropped to 200 mg daily. Have to watch the blood tests for that however as I do not now have an oncologist but will look for one in Northern AZ when I get on Medicare (coming up).

Anyone with thoughts or ideas, fire away. Hope all are safe and fighting the good fight.


#2 Sneezy12


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Posted 16 March 2015 - 02:47 PM

What was your most recent bcr/abl? Regards, Frank

#3 roamingdoc83


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Posted 16 March 2015 - 02:57 PM

Haven't had one since 2011 - had dropped down to 'very' good levels by then.

But without insurance they are over the top cost wise.

#4 Busa



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Posted 16 March 2015 - 03:14 PM

Hi Roaming,


We're in the same boat, I was diagnosed in June of 09 and take 400mg of Gleevec daily.  Also had Cobra insurance when diagnosed and then priced out.  It was at @$150 a month and went up to over $700 per month in less than two years.  Thankfully my lovely wife has good insurance...so far. (and likewise bailed on Cali, however this was prior to CML)


As to low T, yep, me too.  As far as testosterone therapy, screw it (pun intended), it is such a hassle. 


Best wishes and never quit the fight.

#5 roamingdoc83


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Posted 16 March 2015 - 03:26 PM

Hi Busa,

Low T has major implications (leaving 'sex' out... now I expect to hear Rodney say something like "that's what my wife said... leave it out."

But Low T can really create issues and mine has almost halved since going back on Gleevec - from 10 to below 5.

Life expentancy, not to guild the lilly here, is reduced and some say 'reduced markedly' never mind fatigue and irritability (which I suffer from - both).. Dam*-It!!!  hahaha.


I was using DMSO and some testosterone and it worked excellently early on but when I went off Gleevec I didn't feel the need for T. Now I need it ... not eating anything and my pants are getting smaller.

Be safe


#6 Busa



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Posted 16 March 2015 - 03:53 PM

Oh sure... take my Dr.'s side :P   I do need to get back on the T therapy and actually have a Dr. apt in the morning.  As to the dryer shrinking my pants, yeah that is happening to me also.


B= bald

U= ugly

S= short

A= umm.... albino :blink:


As I've said elsewhere, I'm a babe magnet.





Now I have to go look up "guild the lilly", darn it I hate it when I have to learn stuff...

#7 roamingdoc83


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Posted 16 March 2015 - 04:04 PM

'gild the lily' - To apply unnecessary ornament - to over embellish....

I spelled it wrong. Low T causes 'speling inakkuracys' -  ;^)

#8 Busa



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Posted 16 March 2015 - 04:18 PM

Darn it!!  Now I have to look up "speling inakkuracys'"


Where's that Webster Dicitionary , Dickenarry, Decshunary, Spelling Book.

#9 Marnie


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Posted 16 March 2015 - 06:08 PM

You guys crack me up.  Great sense of humor.  And, Busa. . .I like your tagline.  I need to remember that next time I get my back up and start to argue with someone.



#10 Busa



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Posted 16 March 2015 - 06:20 PM

My other favorite is:


  "Never take life too seriously, you'll never get out of it alive."


But I intend to be the first B)

#11 Buzzm1


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Posted 16 March 2015 - 08:28 PM

Hey roamingdoc83


October, 2009 ... me too


what kind of business?


was on Gleevec 400 until 12-07-2014 when I dropped down to 300; was still PCRU in Jan.; test again in April


have been on Medicare for 10 years ...

had a great retiree medical insurance plan until Lockheed canceled retiree medical plans two months ago


may have to experience the donut hole in Jan. 2016 just before Gleevec goes generic, in the U.S., on Feb.1

of course Kaiser has already forewarned that there is no guarantee they will carry the generic, or if so, when


personally pretty miserable ... hands, arms, shoulders, back .. cramps, tendonitis, bone pain, rotator cuff problems

mostly the end results of a childhood injury

the bursitis finally went away ... too much time on the keyboard/mouse over the last 7-8 years


seriously need to begin rehabbing, but not until I get the show on the road; used to be a workaholic and still am 

have been developing an educational blog, currently focused on federal political issues

not sure how much time I have left... first things first


testosterone? what's that?



For the benefit of yourself and others please add your CML history into your Signature


02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive


2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17


At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  


In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  


longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.


Cumulative Gleevec dosage estimated at 830 grams


Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  


Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

#12 Trey


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Posted 16 March 2015 - 08:33 PM

Low T does seem to be an issue with TKI drugs, mainly Gleevec and to some extent Tasigna.  Sprycel not so much.  It is probably traced to c-Kit inhibition, which Gleevec does to the greatest degree.  As with most issues, it is not universal in its impact. 

#13 roamingdoc83


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Posted 16 March 2015 - 09:21 PM

"...not universal in its impact"... ;^)    A universe of one?


Buzz...IT/Networking (was a DC before that).

Exercise is essential (I believe) for cancer patients and especially those who have these long term issues...


I know when I exercise I feel better... but the Low-T is really effecting me and has dropped from near 10 to just below 5 in a matter of months. Need to address that before I become completely neutered hormonally.


Political issues... you are right about not much time!


#14 kueljuel


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Posted 17 March 2015 - 01:42 AM

I know "low t" is for the most part a guys issue, but as I have said before I had all these side effect but wasn't sure if they were true, or the fact that I am a very busy working mom with teenage boys, and a baby girl. Long story short I went to hormonal wellness dr and I have very low T...like 0, none, nada...explains alot really. I got pellet inserts that go just under the skin and last for 3=4 months. A bit expensive, but my husband says it was well worth it. :D I know there are alot of different low t therepies, but the pellet seemed the least of the synthetic crap, and was like a slow release capsule/pellet instead of the shot. It helped me get back level again, so maybe something else for you to look into.

#15 roamingdoc83


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Posted 17 March 2015 - 08:49 AM


Tell me a bit about the 'pellets' please - I have not heard of them and I am highly allergic to 'patch adhesive' which is one of the more used methods of delivery. In the past I'd ordered a form of testosterone and mixed it into a delivery system but this sounds very much simpler and, as I'm not making a lot of money, I want the most bang for the buck. I am nearing zero! Thanks for the heads up.



#16 carrie


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Posted 18 March 2015 - 11:51 AM

I am in northern Arizona. Only one Oncologist in the Show Low Area. He splits his time between Scottsdale (near Phoenix) and here.

I have not checked all my hormone levels lately. Not a priority for me.

Hope your business does well and welcome to Arizona.

Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0























14.109   Changing to Tasigna 7/7/17


7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.

#17 hannibellemo


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Posted 18 March 2015 - 12:40 PM

I agree with Marnie (it's alarming how often I agree with Marnie - I can think on my own, darn it). I love your sense of humor Busa and roamingdoc83. And, Busa, I just quoted your tagline to someone yesterday!



"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#18 roamingdoc83


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Posted 19 March 2015 - 07:32 AM


Right, there are not many good Oncs here in Northern AZ... I am trying to find one now as I finally am on Medicare and that helps. Went without an Oncologist (or seeing one) for nearly 4 years - no money, no insurance.


EVERYONE should read these recent studies...


Read 'any' of these links. I did not know this and it is more or less a recent development.

I feel terrilbe and have for the past five months. Will do a full Thyroid test today. Already have litterally 'no' testosterone

and the 'master' thyroid can be a cause of low 'anything' in the human body. I think all on Gleevec should have thyroid checks done every six months.




Just "wow".
"As a result of these studies, it is now recommended that all patients starting therapy with TKIs have their thyroid function tested prospectively"




#19 lplaskin



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Posted 19 March 2015 - 02:51 PM

roamingdoc83   I have had hypothyroidism since the 80s, long before my dx of CML (2009).  I have it checked 6-8 times per year.  I have concerns with my continously low hematacrit and hemoglobin and my widely fluctuating plateletts.  After BMBs, blood trans. iron trans, and changing medications, my onc/hema does not no the answer.  My BMB shows adequate stores of iron, but my blood shows very, very low iron counts. This has been going on since  2011.  So......... :wacko: :(

#20 roamingdoc83


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Posted 19 March 2015 - 04:34 PM


Read the effect that TKIs have on the Thyroid... "even" if you already have a poor or malfunctioning thyroid. Rather startling but perhaps 'everyone except me knew about it?'   ;^)


I have almost no Testosterone (and that could be a poor Thyroid function - I will know ASAP as I just ordered and rec'd my blood draw) and I am exhausted, big circles under my eyes, gained 25 pounds in five months and I'm only eating 1500 cals/daily and exercising, have more calf pain than I can ever recall (Thyroid has a lot to do with the Achilles tendon) and dry skin, hair, nails, fluctuation body temps... moody (or so my wife tells me but what does she know... grrrhhhhh ;^) , meloncholy (baby)... and several others that, once I realized that "Perhaps" my thyroid was acting up (as my Testosterone is really really low) I came to realize it was not a return of HIGH WBC and CML, but the lack of hormones...


Anyway... hoping to get this resolved, never had low test or Thyroid function ever.


Gotta find a good Onc in N. AZ too, that is hard.


Take care.

Also tagged with one or more of these keywords: CML, testosterone, pain, stopping, Gleevec

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