20 replies to this topic

[klf2013]

Question to all the gals out there.  I am 44 and my hormones are wreaking havoc. Not sure which symptoms are Sprycel related or that dreaded monthly cycle. I am considering starting a low dose birth control pill to alleviate my symptoms. I am just not sure that the Sprycel is compatible. I am going to be meeting with my GP about it, but I know her knowledge with all things CML is limited. I thought it would help if I had the info, and then double check with my Onc, since he is not real knowlegeable about anything except oncology. THoughts?  Trey, feel free to weigh in.... 

[Trey]

Our TKI drugs cause side effects because they target signalling which we would prefer to leave alone.  We would prefer to only target the BCR-ABL, but other kinases (cell signalling enzymes) also get inhibited, leading to side effects.  Since each TKI drug is slightly different, they each have varying levels of kinase inhibition leading to differing side effects.  For instance, Sprycel targets kinases called SRC which Gleevec and Tasigna do not inhibit.  But overall we know they affect hormones to some degree or another:

http://www.lrjournal...0298-7/abstract

 

The thyroid is one of the most affected hormone producing glands for those taking second-generation TKI drugs (especially Sprycel due to its SRC inhibition):

http://www.ncbi.nlm....pubmed/20929406

 

The thyroid has many functions and serves an important controller function for the entire hormone system.  Since it helps control body temperatures by interaction with the pituitary and hypothalamus, dysfunction can cause alternating hot flashes and feeling cold.

http://www.endocrine...r-thyroid-works

 

There are many issues related to side effects which are not known about these drugs.  So the side effects issues are still being defined.

 

Beyond the hormonal, don't neglect the issues of potassium and magnesium depletion caused by TKI drugs.  Most patients (especially women) would do well to supplement or otherwise increase intake of these minerals.  Low levels of potassium can mimic hormone dysfunction, and maybe even cause or exacerbate it:

"Abnormal potassium levels may cause symptoms such as muscle cramps or weakness, nausea, diarrhea, frequent urination, dehydration, low blood pressure, confusion, irritability, paralysis, and changes in heart rhythm."

http://www.healthlin...p?hwid=hw202677

 

I would start with thyroid function testing.  But the inter-relationships of the endocrine system often makes it difficult to sort out what is causing what, and what is being affected by what.

[snowbear]

I've been on Gleevec since December, 2014 and my cycles have gotten really wonky.  I did read that TKI's can shut down ovarian function.  I don't know if that's what's happening, but I suppose it could be.

[cleocans]

I have seen you mention the problems with  potassium and magnesium a lot because of TKI's.

 

My magnesium has always been normal and my potassium at times pushes too high.

 

I do believe I  have some hormonal issues though.  I had my thyroid tested in February  it was 2.8 but have never had my T4 or T3 tested.  I struggle with weight gain and I don't think it is all due to my water retention problem.

[klf2013]

Our TKI drugs cause side effects because they target signalling which we would prefer to leave alone.  We would prefer to only target the BCR-ABL, but other kinases (cell signalling enzymes) also get inhibited, leading to side effects.  Since each TKI drug is slightly different, they each have varying levels of kinase inhibition leading to differing side effects.  For instance, Sprycel targets kinases called SRC which Gleevec and Tasigna do not inhibit.  But overall we know they affect hormones to some degree or another:

http://www.lrjournal...0298-7/abstract

 

The thyroid is one of the most affected hormone producing glands for those taking second-generation TKI drugs (especially Sprycel due to its SRC inhibition):

http://www.ncbi.nlm....pubmed/20929406

 

The thyroid has many functions and serves an important controller function for the entire hormone system.  Since it helps control body temperatures by interaction with the pituitary and hypothalamus, dysfunction can cause alternating hot flashes and feeling cold.

http://www.endocrine...r-thyroid-works

 

There are many issues related to side effects which are not known about these drugs.  So the side effects issues are still being defined.

 

Beyond the hormonal, don't neglect the issues of potassium and magnesium depletion caused by TKI drugs.  Most patients (especially women) would do well to supplement or otherwise increase intake of these minerals.  Low levels of potassium can mimic hormone dysfunction, and maybe even cause or exacerbate it:

"Abnormal potassium levels may cause symptoms such as muscle cramps or weakness, nausea, diarrhea, frequent urination, dehydration, low blood pressure, confusion, irritability, paralysis, and changes in heart rhythm."

http://www.healthlin...p?hwid=hw202677

 

I would start with thyroid function testing.  But the inter-relationships of the endocrine system often makes it difficult to sort out what is causing what, and what is being affected by what.

Hi Trey! Thanks so much for the links. I had a thyroid function test done recently and it was normal. My last CMP was also normal.  At the risk of grossing you out....I have bleeding issues typical of premenopause and the hormones are cyclical..perfectly timed with my monthly cycle. I have seen the gyne who has some options for the bleeding, but from my own research, I feel the low dose BC would handle all the other stuff....if I wasn't on Sprycel, that would be a slam dunk...but I am hesitant due to the known and unknown effects of the TKI.... heavy sigh....

[Trey]

Regarding excessive bleeding, Sprycel can change the shape of platelets making them smoother so they do not clot as well even if the platelet numbers are otherwise normal.  This is known as platelet dysfunction.  It is possible that is part of the problem you face.

http://www.ncbi.nlm....pubmed/19414863

 

The endocrine side effects are poorly understood, but there is little doubt there is a connection.  The issues you have pointed out are a recurring theme here.

 

I have noticed that testing for mineral levels may not be the same as mineral usage for TKI patients.  The TKIs appear to affect the usage end of the equation, so more minerals may be needed than defined as "normal".  This is not well understood, but I know for certain that although my mineral levels are always normal as defined by testing, when I sweat a lot in summer heat I get awful muscle cramps unless I take extra potassium.  I never had any muscle cramp issues prior to CML.  This is an example where regular testing may not show the real issue because the tests look for simple markers rather than testing actual function.  Thyroid function tests could be another example since they only look for simple downstream markers.

[chrissy778]

Snowbear Interesting, I will have to search for that. I was diagnosed with cml in 2013. I am 44, and take Gleevec 400mg I only had 3 cycles the whole year of 2014. My obgyn dr told me it is because my immune system is low as to why I am not having them. I still get cramps occasional pimples and feel hormonal and weepy certain times of the month, but I call them phantom periods.

[snowbear]

Here's the link to the article I found:   http://abcnews.go.co...=4510687&page=1

 

It appears to be several years old, so it may have been disproved by now.   Or maybe not.  It's still interesting that all of us are having similar symptoms.   I'm 44, too.

[Trey]

Another "ovarian failure" case showed this can be reversible after stopping TKI therapy:

http://www.ncbi.nlm....les/PMC3228060/

 

I would expect this would generally be a reversible issue, probably even for the woman in the ABC news article although I do not know.  When TKIs disrupt processes it is normally reversible. 

[MCPO]

I was 28 at diagnosis and TKIs have had a huge impact on my cycles.  I had an ovarian cyst shortly after starting Sprycel, which ended up with needing the whole ovary removed.  I was bleeding with my periods for 10-14 days at a time, and having very short intervals between periods.  I ended up having a hysterectomy, which fixed the bleeding (no utuerus means no more bleeding...best decision of my life!!), but since they only removed my uterus and kept my remaining ovary, my menstrual cycles continue to be out of whack.  My hysterectomy fixed the bleeding symptom, but not the problem of monthly hormonal changes from TKIs.  I continue to have very painful/sore breasts during different points of my cycle and intense PMS symptoms.  I have had this with both Sprycel and Tasigna.  I am now 33 and considering options.  I tried birth control pills prior to my hysterectomy to no avail.  I had break through bleeding and that's why I ended up choosing the hysterectomy route.  I am considering trying to see if bcps help with all the other PMS symptoms that I continue to have though.  I'm interested to see what your experience will be.  One oncologist told me there was no way the TKIs were causing all of my monthly cycle changes.  Another oncologist agreed with me 1000% percent that it was the TKIs.  Many women on this board have reported TKIs interfering with their cycles.  

[Frogiegirl]

MCPO my doc said my cycle issues were not tki related either.....but I knew better. The changes I had occurred shortly after my diagnosis and treatment with tasigna.

[klf2013]

Regarding excessive bleeding, Sprycel can change the shape of platelets making them smoother so they do not clot as well even if the platelet numbers are otherwise normal.  This is known as platelet dysfunction.  It is possible that is part of the problem you face.

http://www.ncbi.nlm....pubmed/19414863

 

The endocrine side effects are poorly understood, but there is little doubt there is a connection.  The issues you have pointed out are a recurring theme here.

 

I have noticed that testing for mineral levels may not be the same as mineral usage for TKI patients.  The TKIs appear to affect the usage end of the equation, so more minerals may be needed than defined as "normal".  This is not well understood, but I know for certain that although my mineral levels are always normal as defined by testing, when I sweat a lot in summer heat I get awful muscle cramps unless I take extra potassium.  I never had any muscle cramp issues prior to CML.  This is an example where regular testing may not show the real issue because the tests look for simple markers rather than testing actual function.  Thyroid function tests could be another example since they only look for simple downstream markers.

Thanks Trey. I have noticed more muscle cramping in general when I take my walks in the warmer weather. Lately, I have also noticed more soreness overall, but especially in my hands. I thought it was a change in weather, but after reading this post perhaps it is potassium.  I guess I need to supplement...more than an extra banana a day!

[Trey]

Bananas are over-rated as a source of potassium.  Carrots, celery, and other veggies have more, and with far fewer calories.

 

http://www.whfoods.c...&tname=nutrient

[Damerault]

Klf2013, I am sorry to hear about all your issues. But, I had very similar symptoms right before my diagnosis. Actually, I think that some of them might have been CML related and I was seeing a gynecologist when I should have been seeing an Oncologist. Like you I had a very heavy periods, was very tired, lots of headaches and awful cramps. I had a Morena IUD inserted and it really helped. I am 47 and I think a lot of this comes with age sadly. I am on Tasigna, but with the IUD I no longer experience heavy periods and cramping.

[klf2013]

Klf2013, I am sorry to hear about all your issues. But, I had very similar symptoms right before my diagnosis. Actually, I think that some of them might have been CML related and I was seeing a gynecologist when I should have been seeing an Oncologist. Like you I had a very heavy periods, was very tired, lots of headaches and awful cramps. I had a Morena IUD inserted and it really helped. I am 47 and I think a lot of this comes with age sadly. I am on Tasigna, but with the IUD I no longer experience heavy periods and cramping.

Hi Diane,

I am so glad you chimed in. The IUD was an option I was looking at, but it didn't really address the moodiness I am having. I am going to try the low dose BC and see what happens. FIngers crossed!

[Lisa Lisa]

I too have had major bleeding issues while on Sprycel. I started taking Sprycel in March 2015, and ever since then the bleeding has been horrible. I am 50 years old, and my periods have always been heavy, but at least they were only lasting seven days. I have bled for almost 2 months straight, on and off. Last month I spent two days in the hospital because of this. My oncologist is telling me it is not a side effect of the Sprycel, and he has not heard of this ever being do severe . He is a CML specialist and it seems he just wants to treat the CML and not the side effects which is BS. I am very very annoyed because he is telling me it is not his department to deal with that but that of a gynecologist which would be fine but then own up to the fact it is because of the TK I. Anyway, my gynecologist put me on something called Aygestin . So far it is working fine. I am on 5 mg one time a day. You can PM me if you want any other info on this I will be glad to help you. I did not want to have a hysterectomy or anything else that is why I am taking the pill until I can actually buy some time and figure out what I do want to do. Good luck

[Dona_B]

Unfortunately, I'm part of this group (on Sprycel 80 mg) and yesterday my onc said basically the same thing as Lisa Lisa's. He at least looked up my concern which has me wondering if anyone here has logged a potential side affect with a drug company.

[Lisa Lisa]

DonaB,
I see my onc next Tuesday and I will be sure to ask him if he will log it as a side effect. I am in his trial anyway and how could it be accurate if they dont want to log it? Also i will look on tbe my sprycel website to see if its cited there.

[Marnie]

Same issues here.  Profuse bleeding that lasted for about 2 weeks.  Lasted for a couple of years, maybe 3.  I'm on Sprycel 50 mg (down from 100 mg). 

 

That said, my advancing age has taken care of that problem.  Now things are totally unpredictable, but the intense bleeding seems to be done.

 

Marnie

[Lisa Lisa]

Marnie I am sorry to hear you went through this also. Can I ask what treatment if any helped you during that time?