Since diagnosis three years ago my voice has significantly changed. I wake up with a hoarse voice almost everyday. I always sound raspy and I feel like I'm straining when reading out loud. Can this be caused by CML or by Sprycel? I feel like it's getting worse.
Voice Changes-Sprycel
Started by
Mayra
, Feb 18 2016 10:50 AM
10 replies to this topic
#2
Buzzm1
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Posted 18 February 2016 - 10:55 AM
could be ... side-effects http://www.drugs.com...de-effects.html
loss of voice, nasal congestion, oral soft tissue disorder, and upper respiratory infections
be sure to scroll all the way to the bottom of the linked page
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
2012 PCRU, PCRU, PCRU, PCRU
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
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#3
kat73
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Posted 18 February 2016 - 11:53 AM
Mayra - It could be a number of things, but I wouldn't go blaming the Sprycel at the top of the list, although mucus production I think is a side effect I've heard about. I would heartily recommend you tell this to your PCP and request to see an ENT and/or a gastroenterologist ASAP. Certainly also tell your onc.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#4
rcase13
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Posted 18 February 2016 - 04:32 PM
Mayra do you have GERD? Tasigna has caused my GERD to be much worse and I can't take my PPI. I frequently have acid reflux and it causes my voice to change and become raspy and hoarse.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg
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#5
Mayra
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Posted 18 February 2016 - 08:10 PM
Sometimes I think I may have GERD. It's weird like I can't hit any high notes anymore. I'm more of a tenor now. I've made an appointment to see an ENT on Monday to check things out. It may also be my asthma meds that have caused the changes.
My allergies have been bad and I wake up most mornings with lots of nasal discharge. Who knows!! Praying it's not anything worst. I'm a speech pathologist so it's not great for my job.
My allergies have been bad and I wake up most mornings with lots of nasal discharge. Who knows!! Praying it's not anything worst. I'm a speech pathologist so it's not great for my job.
#6
Trey
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Posted 18 February 2016 - 10:30 PM
Soft tissues can swell from the TKIs, especially in the throat and ears. Do you also notice your ear canal seems smaller?
#7
Ladycat1961
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Posted 27 February 2016 - 01:15 PM
Wow, I was diagnosed April of 2015
and I also take Sprycel and I have been experiencing the same things.I used to sing along with the radio at work and my coworkers really enjoyed it and now if I try to sing I sounderstand like a frog croaking. I wake up daily hoarse and congested and it really sucks! I am so happy to be a part of this community because it really helps to know that you are not alone.I hAve learned so much since joining just a few hours ago and I already feel encouraged and less fearful about my future. I hope to gain some friendships from this wonderful community.
and I also take Sprycel and I have been experiencing the same things.I used to sing along with the radio at work and my coworkers really enjoyed it and now if I try to sing I sounderstand like a frog croaking. I wake up daily hoarse and congested and it really sucks! I am so happy to be a part of this community because it really helps to know that you are not alone.I hAve learned so much since joining just a few hours ago and I already feel encouraged and less fearful about my future. I hope to gain some friendships from this wonderful community.
#8
Kellyb333
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Posted 19 June 2016 - 08:15 PM
Hi Mayra, did you ever find out what was causing your hoarseness? I have been deeljng with this lately. Thanks
#9
tiredblood
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Posted 21 June 2016 - 08:55 PM
After I first started Tasigna, I noticed it felt like I had water splashing back up into my esophagus-- like reflux without the burn. That's when I learned the term water brash. Of course, now, I could really use a proton pump inhibitor, but have to stick with Pepcid because of the TKI.
- Water Brash or Increased Salivation - This is where the production of saliva is increased in response to reflux of stomach contents back up to the mouth.
#10
Mayra
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Posted 08 July 2016 - 10:23 AM
Hi Mayra, did you ever find out what was causing your hoarseness? I have been deeljng with this lately. Thanks
Kelly, Sorry I didn't get an update on this post. I finally went to see an ENT and they diagnosed me with a small vocal cyst. The weird part is that I dropped my Sprycel to 70mg and all of a sudden my voice is not as hoarse now and my other side effects have reduced as well. Who know if that had anything to do with it. I also started some vocal exercises and started using these HALLS BREEZER (NON-MENTHOLATED & SUGARFREE).
#11
Mayra
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Posted 08 July 2016 - 10:26 AM
After I first started Tasigna, I noticed it felt like I had water splashing back up into my esophagus-- like reflux without the burn. That's when I learned the term water brash. Of course, now, I could really use a proton pump inhibitor, but have to stick with Pepcid because of the TKI.
- Water Brash or Increased Salivation - This is where the production of saliva is increased in response to reflux of stomach contents back up to the mouth.
This happens to me as well. Usually when I eat BBQ (Brisket, Fajitas etc..) in the evening. If I eat early enough I'm usually fine.
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