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Two questions: Does anyone NOT have fatigue with CML? And would you be concerned about these symptoms?


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#1 Lizzybee

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Posted 12 October 2012 - 05:44 PM

At my last appt, my pcr went up from 0.5% to 0.8% IS.  By itself, that may or may not be significant.

At the appt, I had a swollen lymph node at the base of my throat.  My middle daughter had a cold and I assumed my body was trying to fight it off.  The nurse practitioner said we'd keep an eye on it.  Later that day, the nurse in charge of oral chemo patients called me to say that the NP asked her to follow up, and I should call her in two weeks to let her know whether the node was still swollen. After two weeks, it was still swollen, but smaller, so I wasn't concerned about it.  Then it got bigger and I was going to see the doctor, but I started thinking I was getting another cold, so I cancelled the dr appt.  I never did get a full blown cold.  At this point, the node is pretty big.  It's been swollen for 3 months.

During this same time period, my fatigue levels are through the roof.  I can't focus and concentrate, but my job requires a high level of mental concentration.  Some days, it is taking me 12 hours to work 5-6 that I can account for. I can't fall asleep at night, so I fall asleep between 3-6 am, then sleep through the alarm clock.  I get to work late, but by the time I get there I feel like I need a nap.  Because everything feels so much harder than it should be, I am drained and short tempered.

I feel like I'm back in the black hole I was in before I got diagnosed last year.  I'm frustrated and starting to get scared.  My husband is a stay at home, so if I can't work I will lose my insurance, besides the fact of not being able to pay the bills.  I only have to work 30 hours/week to keep my insurance, but I'm getting concerned about my ability to keep that up.  And of course, that upsets me emotionally, and I don't know whether I need to call the oncologist or a psychiatrist.

I had bloodwork this week for a different doctor, and my CBC is about the same as always.  My urine had wbc and sediment in it, and I am actively losing bone (side effect of Tasigna).  Some of the metabolic numbers were a little off, so I'm at risk for developing diabetes, but not there yet.  My cholesterol is a little high.  I think everything else was normal.

Maybe I just need a medicine change, but then they all have side effects so who knows whether that will help.  I am on Tasigna, 600 mg/day. 



#2 Susan61

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Posted 12 October 2012 - 07:41 PM

Hi:  I think 3 months with a swollen lymph node should be further evaluated to see what is going on, and your fatigue will be worse when you are emotionally upset.  I know when I have things going on, my fatigue is worse.  I do not think its from my Gleevec, but from my nerves.  We have a tendency to use sleep to block out our problems, but we really feel tired.

     Start with seeing your Oncologist for a follow-up to all these things, and maybe even your Primary Doctor.

Take one thing at a time, or you will make yourself crazy with worry.



#3 Lizzybee

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Posted 12 October 2012 - 08:05 PM

I think I will call Monday and try to get an appt with the oncologist asap. 

When I am not fatigued, I don't feel anxious/depressed, etc.  When I am fatigued or unable to work productively, I feel a lot of anxiety and probably some depression.  I have been trying to untangle it to decide whether I am depressed, but I am not struggling with depression and anxiety on days that I am less fatigued.  I don't know, maybe it's some combination of both.  I wonder if an antidepressant would help with brain fog, as well as helping me not feel so stressed when I'm fatigued... but then I think that if I'm not really depressed, an antidepressant could make things worse. Mostly, I feel tied up in knots right now because of stress about not being able to work.  I've gotten very little done this week, and it's scaring me that my symptoms are getting worse.  I thought the little pills we take every day were supposed to allow us to live a normal life.  I wish!

Thanks for responding, Susan.



#4 Susan61

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Posted 12 October 2012 - 08:54 PM

Hi:  Glad your going to see your doctor.  Thats the best place to start.  Depression takes on all different forms, you do not have to feel depressed as we know depression to be.  Anxiety, emotional upset, and of course stress is all a form of depression.  Your worried about job, insurance, illness, and with everything else going on in this nutty world is makng a lot of people stress out.

    I think it will all fall into place for you if you work out each thing gradually.  I have always  been very high strung, and worry about everything.  The past few weeks, I feel like I am getting hit from all angles with sickness, finances, etc. etc.  I had to stop and think that I am going to get all worked up, and I am still going to get through it all.  I might not know how everything will take place, but its not the first time I have been in a situation like this.

   If my husband ever had to stop working, we would be in a bad situation with insurance etc   Then I think that some people who have no insurance or anything else seem to live better than me at times.  You do not qualify for any significant help until you have nothing.  Its a shame, but so true.

  Try to relax somehow if you can.  I think after you find out something from your doctor, you will feel totally different.



#5 Trey

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Posted 12 October 2012 - 09:09 PM

Have you seen your GP to discuss the need for antibiotics for a presumed infection?



#6 Lizzybee

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Posted 12 October 2012 - 09:30 PM

Trey,  I haven't.  But I had labwork this week for something else, and there were WBC in my urine even though I have no symptoms of a UTI.  Maybe a round of antibiotics will help. 



#7 Sneezy12

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Posted 13 October 2012 - 05:42 AM

Be sure to obtain a Clean-voided, midstream Urine Culture before starting antibiotics. Regards, Frank



#8 Happycat

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Posted 16 October 2012 - 07:31 PM

Lizzybee,

No fatigue here.  Well, I get it every now and then, but it's been months since the last time.  Lasts for a day or two then goes away.  It was worse early on, but has tapered off dramatically over the last year.

I do get sleepy from the gleevec though.  Could that be happening to you with the tasigna?  Perhaps it is crossing the BBB and making you zone out at work.  I definitely feel it with gleevec, but since I take it with dinner, it doesn't affect me at work.  Only lasts a few hours for me, as the majority is being absorbed into my system.

That said, what are you waiting for on the lymph node?  Definitely get it checked out, especially if you feel tired all the time. 

I'm not sure if you had these checked out, but also worthwhile checking your iron levels and thyroid hormones.  The fatigue can be caused by other problems, not solely a TKI side effect.

HTH,

Traci



#9 Lizzybee

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Posted 18 October 2012 - 04:10 PM

Well, I have a update.  At my July appt, my oncologist was running behind and I got handed off to the nurse practitioner.  She agreed the lump on my neck was a swollen lymph node and she said we'd keep an eye on it.

I saw my oncologist on Tuesday - I kind of insisted on being seen since I felt like my symptoms were accelerating so rapidly.  The lump on my neck is my thyroid, so I am going to have an ultrasound of that and then follow up with the oncologist.  I have a feeling that if it's not cancerous (and it's probably not), he will say we can just keep an eye on it since my thyroid labs are normal.  But I am going to insist on getting a referral to an endocrinologist.  There is something wrong and if it's not CML, I have got to find out what it is.

Also, I am taking a two week break from Tasigna to see whether I feel better off of it.  If so, I will probably try Sprycel.  But my last dose was Tuesday morning, and I'm not feeling better yet.  My brain is still mush and I'm still exhausted.

My iron, folate, and B12 are normal.  Vitamin D is low normal.



#10 BY196

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Posted 19 October 2012 - 01:14 PM

Did you have labs for thyroid antibodies, in addition to TSH, T4 and T3? Sometimes nodules (if that's what you're feeling) can indicate Hashimoto's.

Most endocrinologists are not familiar with the impact of TKI therapy on endocrine function. I lucked out, found my way to an endo who had trained at Sloan and had experience with sunitinib. He said even with normal thyroid hormone labs people on TKI therapy often have trouble involving inadequate conversion of thyroid hormone or some kind of competitive binding keeping thyroid hormone from getting from the bloodstream into the tissues where it is used. This may not be your problem; it just emphasizes how much is unknown about the effects of TKI therapy.

Good luck--

Beth



#11 Teresabourgeois

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Posted 22 October 2012 - 10:04 AM

Lizzy

My fatigue comes and goes.  Have ever had your Vit D level checked.  It's not a Standard lab so you need to ask for it to be checked.  Since I started Sorycel mine continues to stay low.  My Dr. Gives me a prescription for 50000 units, one pill per week.  It seems to help with the fatigue.

Hope this helps

Teresa



#12 Lizzybee

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Posted 22 October 2012 - 10:53 PM

Beth,  I did have the labs for thyroid antibodies. What does your endo do when thyroid symptoms are present but labs are normal?  I know one of my sisters was on thyroid meds while her labs were still in the normal range, and she sent me information about how symptoms can be present for 20 years before it shows up in the labs.  She was a nurse, and I think the articles she sent me were from her nursing magazines.

Teresa, My Vit D is low normal.  I would like to get it higher. Most days, I don't go outside except to go from house to car to office to car, so I think I could get it higher just by going outside more.



#13 BY196

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Posted 23 October 2012 - 10:16 AM

My endo put me on Synthroid and my symptoms definitely improved, though not completely. I am having trouble finding a good equilibrium, though, and I think it may because there is an interaction between levothyroxine and Sprycel that can increase Sprycel concentrations. My endo is open to me trying Armour (whole dessicated thyroid) as an alternative, which may work better.

Beth



#14 mdszj

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Posted 23 October 2012 - 11:14 AM

Beth

I also take Levothyroxine/Synthroid (50 mcg) and 75 mg Sprycel.  I was wondering what your timing on each is.  I take the levo around 3 pm so my stomach is relatively empty after lunch but a few hours before dinner.  Then I take the Sprycel with dinner (about 7 pm).  Hopefully this minimizes any bad interactions.

Mike


dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16


#15 BY196

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Posted 23 October 2012 - 12:09 PM

I take the Synthroid in the morning and Sprycel around dinnertime, on the same theory as you.

Beth



#16 Lizzybee

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Posted 31 October 2012 - 10:21 AM

I saw the oncologist today, so I have a bit of an update.  I will be seeing a surgeon who does nothing except thyroid to have a biopsy on 11/13.  Since I am feeling better but not great, I am going to resume Tasigna next week and then see the oncologist on 11/14.  If I get worse again, I will switch to Sprycel; but since I'm still not feeling 100%, the dr thinks that Tasigna is not the culprit.  I had bloodwork today to check FSH, and depending on the results, I may start HRT to see if that helps.  My family doctor checked for lyme disease and rocky mountain spotted fever last week, both negative.  My pcr went up for the 3rd time in a row - 1.8% on the IS; that blood was drawn before I stopped taking Tasigna, so I am once again disappointed with the results.



#17 cam_kris

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Posted 31 October 2012 - 01:11 PM

Teresa,

what are you on and how long have you been on it?  I am on 600mg of Tasgina a day since April 18th 2012 and i am so very tired all the time, I know that the Leukemia makes a person in its self, but adding a tki

they say that just makes it worse, i sure hope that is true that the fatigue slacks off, that would be amazing!!  I can sleep for hours and wake up and feel like i havent slept a wink.  Im just tired all the time, starting to

get very old!!


Thanks!

Kris



#18 Trey

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Posted 05 November 2012 - 08:05 PM

I would switch to Sprycel since that is essentially loss of CCyR.  It could also improve the thyroid (maybe a small chance, but a chance) since the TKI drugs can mess with the thyroid gland. 



#19 thomaskk

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Posted 22 March 2014 - 12:15 PM

Hi

How are you doing now ?

Thomas



#20 mariebow

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Posted 22 March 2014 - 01:39 PM

  I have major bouts of fatigue at different times, sometimes just so very tired.  I am glad this is not all the time.






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