Jump to content


Photo

Recurring Sore Throat


  • Please log in to reply
21 replies to this topic

#1 August1

August1

    Advanced Member

  • Members
  • PipPipPip
  • 69 posts

Posted 17 June 2015 - 08:10 AM

Hi everyone,

I have been on 100 mg Sprycel for about two years. Over the past several months I have been getting a recurring sore throat that never seems to go away. I'll also get recurrent ear pain but that tends to come and go. Several weeks ago my ENT took a look and couldn't see anything obvious but we're ordering some imaging tests to be sure. Very annoying and somewhat concerning. Has anyone else dealt with this?

 

Thanks, 



#2 TeddyB

TeddyB

    Advanced Member

  • Members
  • PipPipPip
  • 203 posts

Posted 17 June 2015 - 11:32 AM

I have a lot more mouth/throut issues after starting TKI.

 

It comes and go`s for me, sometimes it last weeks, and sometimes only a few days, also i get a strange mettalic taste in my mouth from time to time.

 

Ear pain no, but tinnitus yes.

 

Hope your problems subside soon, good luck :)



#3 Antilogical

Antilogical

    Advanced Member

  • Members
  • PipPipPip
  • 284 posts
  • LocationPittsburgh, PA

Posted 17 June 2015 - 07:09 PM

Got all of it.  Diagnosis:  Allergies.

 

I've had this problem for years - way before CML.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#4 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 18 June 2015 - 12:00 AM

August,

 My mouth gets very dry I use biotin mouth spray, and I get sore throats off and on. Let me know what your ent says. I went about 5 years ago and he said I needed hearing aids :angry:  I said forget it, but I bought those tv ears and since It's just my husband and me I get by pretty well. My left ear recently got pretty bad and I get sharp pains in it once in a while. Let me know how you make out. I don't want to go back to the ent I am so tired of doctors and tests then they just tell me it's side-effects or age they're still trying to figure out the things that can happen when you're on a tki long term. I just better not get pregnant!!!                                   Billie



#5 August1

August1

    Advanced Member

  • Members
  • PipPipPip
  • 69 posts

Posted 19 June 2015 - 11:26 AM

Hi everyone,

Thanks for the replies. Seems like it could be a combination of things. For whatever reason, this is the first year of my life that I've ever had allergies (pollen, grass, etc.) that have bothered by eyes, nose, and possibly throat. I've also had a minor ear infection recently in my left ear (causing the sharp pain you mention.) I remember my doctor looking at me with a funny expression and saying "How did you manage to get an ear infection? Adults don't get ear infections." It clears up but can recur. And I do have tinnitus (which has increased since going on TKIs) but in the right ear. (An MRI of the IAC showed everything was normal so it's just something I live with.) 

 

Likewise with the sore throat. It seems to move around but never totally goes away. I've also noticed that it feels worse after a night of having a few drinks. So I'm sure alcohol just aggravates the situation, as does waking up with a dry mouth. My ENT has scoped me a couple of times over the last 6 months and I've had all of the usual tests for strep, etc., all of which have been normal. I do wonder about my risk for developing SCC of the throat so I am having an MRI (contrast) done next week. (They recommended a CT scan but I declined that in favor of the MRI.) The funny thing is that they are actually looking at dasatinib to potentially treat SCC of the head, neck, and lungs. So I'm not sure what to think!

 

Take care,



#6 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 19 June 2015 - 12:32 PM

August 1 - Wow, I can relate to all that stuff - I've noticed the "allergies" that aren't really, the moving around sore places in my mouth (not often throat, tho) and for sure, the tinnitus has increased noticeably since TKI's.  My hearing loss has worsened as well, and that's been documented. I feel very fluid-y in the head, and I have timidly suggested to various doctors that I feel like I have a whole lotta fluid in my brain or ear or something.  They pooh-pooh, because that's what Grand Poohbahs do.  In addition, one side of my face is noticeably (to me) "fatter" with fluid (?) and my eyes are always puffy (although nowhere near as bad as they were on Gleevec - I'm on Sprycel.)  I can feel "pockets" of fluid around my ribs and waist that mysteriously move over a period of days.  Sometimes they have hurt on the inside to breathe all the way in. I've had small to moderate pleural effusions that NOBODY could've cared less about, which was a surprise to me, but then I decided to relax. Since they didn't care it must not be a big deal.  My oncologist shrugs and says sometimes they resolve themselves and the thinking these days is that a lot of patients have them, more than they thought previously, and that it's just a side effect that doesn't matter (unless it gets worse, of course.)  But the alcohol thing makes me very, very sad.  If I have even one glass of wine, I know I'm going to pay for it by waking up multiple times in the night, and the 100% dry mouth thing.  Maybe I just need to get in training and drink MORE!  Good luck on the MRI.


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.


#7 jmoorhou

jmoorhou

    Advanced Member

  • Members
  • PipPipPip
  • 314 posts
  • LocationOutside of San Francisco

Posted 19 June 2015 - 01:47 PM

It sounds like GERD to me.


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#8 TeddyB

TeddyB

    Advanced Member

  • Members
  • PipPipPip
  • 203 posts

Posted 19 June 2015 - 02:10 PM

So you both (Kat and August) have tinnitus as well, oh well, seems Dan, Trey and me arent the only ones in the tinnitus club.....

 

I have never had it before the TKI, and its one of the worst side effects for me, that and the fatigue.

 

My GP said that medications like Gleevec could cause tinnitus, but she also said it would probably go away after stopping. Will be "fun" to try out that theory if i ever get to the point that stopping is an option :)



#9 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 19 June 2015 - 03:55 PM

I also have tinnitus. I realized it when I was sitting out on the screened porch one evening with friends and there was a lull in the conversation. I mentioned that the insects were really active and everyone looked at me like I was nuts. Evidently I was the only one who could hear the "night music". Fortunately, I don't even notice it most of the time.


Pat

 

"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>


#10 dede5

dede5

    Advanced Member

  • Members
  • PipPipPip
  • 148 posts

Posted 23 June 2015 - 12:24 PM

When this thread first posted, I skimmed over it, but didn't respond because it didn't apply to me. Today, I went looking for it, because I've been having a sore throat for about a month, with intermittent screaming earaches. I was born and raised in the land of allergies, so I know what that's like, and have never had anything like this. I've ignored it this long because I assumed it was allergies, but it isn't going away. I've also noticed for about 6 months, in my pictures, my eyes look like they're swollen shut (just little slits). I've stopped having pics made without my sunglasses (see profile pic). I had started to wonder if it was something really bad, and that's when I took another look at this thread. Thanks for posting it.


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#11 chriskuo

chriskuo

    Advanced Member

  • Members
  • PipPipPip
  • 367 posts

Posted 24 June 2015 - 02:01 AM

How are your various white blood cell counts?



#12 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 24 June 2015 - 08:38 AM

My mouth and throat seem to get sore on and off - my doctor recently suggested bicarb mouthwash, which has helped quite a bit. Stops my tongue getting to that really sore stage...

Also get ringing in the ears and the odd 'phantom' ear bug, where it feels like a big buzzy bug has just flown past my ear. Don't know what that is, but it's so weird when it happens, I usually swat at the air randomly (at the non-existent bug!!).

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#13 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 29 June 2015 - 05:22 PM

Yeah, TeddyB and hannibellemo et al, the tinnitus is quite a trial.  It takes a lot of fortitude to ignore it.  I get scared sometimes, especially when I find another thing that I can't hear.  If I were 90, I don't think I'd care all that much.  But my beloved music is beginning to sound funny to me - I'm missing instruments, pianos sound tinny, that sort of thing.  I'm about to go in for my annual test and get the bad news, but the good news is that I can get my hearing aids tweaked to compensate, so I guess I'll just go bumping along as long as I can.  I had the tinnitus and hearing loss before I started TKI's (and before CML), but there had been no change for years.  As soon as I started Gleevec, it all got worse and has continued to get worse. As always, it's hard to know how much the TKI's have to do with things.  I am taking a break from Sprycel for 3 weeks soon (surgery), so I'll let you know if anything changes for the better.  It's probably too short a time to make any difference except in the face puffiness and skin color.  Ears, who knows.  I'll look great, but still need captions!


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.


#14 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 30 June 2015 - 09:35 AM

I'm curious, kat73, why you're taking a sprycel break for surgery.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#15 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 30 June 2015 - 11:06 AM

I don't want any skin and tissue clotting, healing or scarring issues.  It's revision surgery post reconstruction (DIEP flap).  There isn't much in the literature, and doctors differ (according to their speciality, I've discovered), but the tyrosine inhibitions affect all these normal, healthy cell healing processes - maybe not negatively, just differently - and no one really knows how exactly.  My onc says there is no need to stop, but he's not prohibiting me.  Trey pointed out that, in the absence of any observed problems with clotting, healing, and scarring, there is no need to stop for the surgery.  But, I have indeed noticed that ordinary bumps and scrapes DO take a significantly longer time: I bleed more and longer, it takes FOREVER - just FOREVER - to heal up, and lastly, the scar just simply doesn't EVER go away.  All different from "before."  I have been at MMR or below for about 4 years, so I think that's another factor that my onc is considering. I am stopping a week before the surgery and for two weeks after.  Looking forward to the puffy toad eyes going away!


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.


#16 August1

August1

    Advanced Member

  • Members
  • PipPipPip
  • 69 posts

Posted 22 July 2015 - 07:42 AM

Hey everyone,

MRI came back and everything is perfectly normal. They did them for both head/brain/IAC and soft tissue of neck. Sore throat is still there though and feels like I have something the the back of my throat. Urg. 

 

Also at my last CBC/PCR all counts were normal and I was PCRU. So if the sore throat is related to the Sprycel I'll just have to accept it as part of the new normal.

 

Really annoying though. The sore throat, tinnitus, and pressure in my head all feel like chronic conditions that never really go away. Maybe I can make improvements in my life style to get better sleep, eat better, drink less. Either way I am hoping they abate over time or one day I get a shot at dose reduction. 

 

Take care,



#17 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 22 July 2015 - 09:08 AM

Throat issues can sometimes be traced to TKI drugs messing with the thyroid, which is in the throat.  It can enlarge a bit (not enough to see on an MRI) and put pressure on the esophagus, then irritation occurs due to the constricted esophagus.  It can be felt as a lump in the throat feeling.  This is also why it is harder to swallow large pills.  Symptoms of thyroid issues are fatigue, brain fog, hair loss, mood changes, etc (sound familiar?).

 

http://www.medicinen...how/article.htm

 

 

BTW my tinnitus subsided considerably after a couple years, and stopped completely after I went to low dose Gleevec (200mg daily).


Edited by Trey, 22 July 2015 - 09:10 AM.


#18 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 22 July 2015 - 09:20 AM

August 1 - So glad your MRI came out well!  That's just generally comforting.  I agree with Trey's post just now about thyroid, but also see jmoorhou above - have you had an upper endoscopy to look for GERD?  Sometimes it can be "silent" GERD (no noticeable heartburn) that just affects the laryngeal/pharynx area (sore throat.)  I also know from my own experience that some of these bothersome things get noticeably more bearable when some good news (like PCRU - yay!) comes along.  We humans - what a glorious mess we are.

 

Not to change the subject, but to close out my earlier posting here, I am sad to report that, this time, taking three weeks off my TKI for surgery did NOT make my puffy toad eyes go away.  Nor did the "fat" side of my face or mysterious pockets of fluid around the ribs, etc go away.  I did get color back in my skin, but that has to go undocumented since I am in full summer Tan Towels mode.  It keeps me from scaring the horses in the street . . . 


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.


#19 winespritzer

winespritzer

    Advanced Member

  • Members
  • PipPipPip
  • 101 posts

Posted 22 July 2015 - 10:26 AM

Hi,

Just saw my onc yesterday and told him I've been getting sore throats that last 24-48 hrs. Told him I drink lemon tea with honey all day long until the sore throat subsides.  Told him this never happened pre-Sprycel.  He said, "not to worry".

Also told him my skin peeled off all over my entire body as if I'd had a sunburn even though it was in February in New Jersey!  Told him my gynecologist and internist said it was from the Sprycel and the rapidly dividing cell side effect on skin tissue. AND to report it to the onc. He said since it only happened once, "not to worry". 

So I am trying very hard, "not to worry".  In fact, I just realized I have a sore throat right now!

 

Other than that I am doing well  on the Sprycel (.045 at 15 mos.) and awaiting my 18 mos pcr test results. Thank you all so much for sharing.  Your support is how I manage "not to worry".

Winespritzer


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#20 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 22 July 2015 - 10:46 AM

Generally side effects are "not to worry" issues to the Onc.  And that is generally accurate enough except that they interfere with quality of life, which is significant to us and what we worry about after we know we will survive CML. 

 

You would probably be a good candidate for lowering Sprycel dosage if this PCR result is lower than the last one since you are well past MMR.






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users