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Bone Pain, Headaches, Ear-Popping, Should I Worry?


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#1 Tedsey

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Posted 16 March 2012 - 10:25 AM

Not sure if there are latent side-effects with Sprycel...  Anyway, I have been on 100mg Sprycel for over 2 years.  I have not reached MMR yet, but was close with my last PCR.  Lately, I am starting to get the rushing/popping in my left ear again (seem connected to my jaw--very weird), and terrible bone pain in my ribs.  I am also getting bad flash headaches (never last longer than 15 min.).  I had the ear rushing right before I was dx and the bone pain just after taking Gleevec, but never on S.  I only got headaches when I first took G and the week I switched to S.  Could this be a sign that things are getting worse, or do side-effects or symptoms just cycle?  I have my PCR next Monday.  So, I guess that will be the indicator.  Just wondering if anyone has had this after being on the meds for a long time.

Teds



#2 CallMeLucky

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Posted 16 March 2012 - 10:37 AM

Most likely it is either unrelated or it is a side effect flare up.  If it is a flare up it could be temporary (a cycle) or you may find they linger.  I think it would be very odd that the issues are from CML.  3 months ago you were close to MMR, so to lose response and progress that fast is highly unlikely.

Hope you feel better soon.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 Marnie

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Posted 16 March 2012 - 10:48 AM

I'm having bone pain (legs) and have never had it before.  So maybe that's a latent Sprycel thing.  I'm also getting brain fog, I think. . .never noticed it before.  Though maybe that's just old age.  Also annoying hair issues. . .and cataracts seems to be getting worse.  Maybe Sprycel isn't so great a drug, darn it.  Guess I'll be mentioning all of this to my doc in 3 weeks.  I haven't had the ear thing. .. I wonder what your onc will say about that one.  Good luck at your appointment.  My PCR is next Tuesday.  I'll cross my fingers for you and you can do the same for me, Tedsey.  Because of all of my lab switches since August, I don't have a clue how I've been doing.  New baseline (IS) got set in January. 



#4 hannibellemo

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Posted 16 March 2012 - 11:11 AM

Teds, Marnie,

I agree that Sprycel side effects, both old and new, can pop up when least expected.

Marnie, after 2 years I also developed bone and joint pain in my legs - they don't last long but they can be painful!

Teds, I have irritating edema issues related to sinus occasionally and when I first stated taking Sprycel my ears were plugged for the first 2 months. No reason to think that couldn't happen at any time to you, too.

Sprycel is a great drug! That said, you know how much I love/hate it,  if you can deal with the irritating side effects! Personally, I will do everything I can to manage any future PEs if I can stay on this hateful drug! I could switch to Tasigna but after my liver issues on Gleevec that makes me very nervous.

My chest wall muscles are so irritated from the PE that every time I breathe now they go into spasms - the fun just continues! If I didn't hate the idea of steriods so much you can bet I would be beating down my oncs door demanding he do something! Oh, yeah, that's right, he's on Spring Break! (That was a nasty crack, totally uncalled for, but I feel better now

Good luck, Teds, I really don't think this shows anything about how well the drug is working or not working for you. Sprycel may be a drug that will also us to maintain a response while taking a lower dose. I know I'm anxious to try it.

Pat


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"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>


#5 jrsboo

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Posted 16 March 2012 - 11:48 AM

I agree that side effects cycle and change.  I just started having the ear thing, where mine is a crackling feeling in one ear and my vision in the eye on that same side changes throughout the day (very noticeably).  So my onc started me on Lasix and Potassium.  Now I pee every five minutes.  But my ear is better and the vision thing isn't quite as noticeable.  So that stuff is probably related to fluid buildup.

And  just yesterday decided that I need to look at this as just for another year.  I can do this for another year.  Then I will be PCRU for two years and will be demanding that I taper down.  I am only in my 40s and cannot fathom another 30 years like this. 

I have been down to Dr. Mauro in Portland and he seemed quite agreeable to the idea that 100 mg is just too much for some people.  So I will wait the 2 years........don't want to irritate the TKI gods.............or their pharmaceutical overlords............

Just my 2 cents.

Caroline



#6 Susan61

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Posted 16 March 2012 - 07:31 PM

Hi Marnie:  As you know I have always been on Gleevec, and lately I am suffering so bad with leg, back, and neck pain.  I have had Arthritis for so long that I do not even know the difference anymore between Arthritis and drug related joint pain.  I also have bad allergies.  We are getting a few weeks here of very warm weather, and the pollen is killing everyone so early this year. Throat, ears, etc.  So I think its hard for anyone to really know what is going on these days.

I will keep my fingers crossed for you on this PCR test also.

The Brain Fog I have had for years, and actually getting used to it. but it could be old age.  I know I am older than you.

Hope you have been good in every other way.

Susan



#7 Marnie

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Posted 16 March 2012 - 07:39 PM

Hi, Susan!!  I hope you are well!  My side effects have always been pretty minimal. . .the bone pain isn't a big deal. .. just an annoyance.  The brain fog and eyesight are a worry, though.  And the gray hair and the wrinkles that are showing up.  Hard to know if I should blame things on old age or on TKIs.  Mostly though, I just keep focusing on having fun and not sweating the small stuff.  I certainly can't complain. . .I'm in pretty decent shape all around.

Marnie



#8 Marnie

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Posted 16 March 2012 - 07:44 PM

Yeah. . The Stand was his best. . .especially fun, since much of it takes place in Boulder. . .he refers to places we know.  The Shining scared the bejezus out of me, and while I was reading It, I couldn't take a shower and stand with my back to the drain.  While I enjoyed the Dark Tower series a lot, the ending was a severe disappointment. . .he let a lot of people down for sure.

Another fun author, if you enjoy light reading (fantasy/science fiction) is Lois McMaster Bujold - -the Miles Vorkosigan series.  Very fun.

Now I'm in the middle of The Game of Thrones, but the darned hardback book is so huge I won't be able to take it with me to NC next weekend, so I'll have to find something else to travel with.  We travel light.  Carry on only.



#9 Guest_billronm_*

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Posted 16 March 2012 - 08:00 PM

Hi Teds, Hi Marnie,

   I've been on S almost a year and a half, and I have had so many dumb side-effects they don't last long, but every now and then they pop up again. The bone pain is miserable, but it doesn't last long, once in a while I take ibuprofin if something bugs me too much. I get a lot of head rushes, and my ears ring all the time. My sinuses drive me crazy, I guess that's common with S.  All these se's come and go and after all this time a new one pops up for a while.

  Marnie I got cataracts within a year after dx. I had to have them removed less than 2 years after dx. My eyes keep changing constantly. And the brain fog does get better. Remember mine was so bad last year I couldn't drive for a while. Right now there are so many posts about brain fog I was wondering if it could be seasonal.

I know I put so much pressure on myself this time of year,because we're supposed to spring clean and work out in the yard and be happy and cheerful because winter is over. I just can't do the things I used to and I feel guilty. You've been under a lot of pressure for quite a while,maybe it's just all catching up with you. I get my fancy bw March 26, and I see my onc April 2. I'm hoping he'll  reduce my S.    lots o luv  Billie



#10 Trey

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Posted 16 March 2012 - 09:15 PM

It may still be winter in Chicago, but don't forget that we also get seasonal allergy related issues as some initial signs of Spring arrive (esp. mold with the wet leaves).  Maybe a combo of meds and early signs of impending Spring.  Just a reminder that not everything is related to the oft-maligned TKIs.  But then again it could be caused by them. 



#11 Guest_billronm_*

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Posted 16 March 2012 - 09:59 PM

Trey,

   As long as I can get away with blaming tki's i'm going to do it. Otherwise I'll have to blame it on my age.                                       Billie



#12 Marnie

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Posted 16 March 2012 - 10:22 PM

The Dresden books are light and fun.  Did you know there was a short-lived t.v. series?  You can stream it off of Netflix, I think.  It's called "The Dresden Files."  The Jack Reacher books are also a fun read. . .totally different genre, though.  If Jack Reacher were real, he'd knock the stuffing out of CML, and look good doing it.



#13 Dina36

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Posted 16 March 2012 - 11:50 PM

Hi Tedsey,

I also had ear popping prior my dx and it went for months and months, it was kind of  annoying.



#14 ruineto

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Posted 17 March 2012 - 08:54 AM

I dont think these symptons are related to TKIs at all.

The most common ones are skin rash, heartburn, cramps, nausea, diarrhea. Only way to find out would be to stop taking and see if the symptons got better (Not recommended )

You should discuss with your oncologist!

But its like trey just said... not everything is TKIs fault



#15 Tedsey

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Posted 17 March 2012 - 12:18 PM

Trey,

I couldn't agree with you more about the allergies.  BTW, we had an early spring in Chicago.  And there are some things I get now that I believe are related to the CML and maybe the TKI.  I never, ever got headaches before the drugs.  The ear-rushing/popping started a couple days before I was dx (almost winter, so prob. not allergy related), so I am sure that is related to the CML, (unless things have changed to another malady that mimics).  This rib pain is very specific and I only had it after starting the TKI.  But, I sit sideways and semi-twisted at the computer, so maybe it is muscular and totally not related (fingers crossed).  But it could also be the CML.  Never had any bone pain even before dx (my only problem was a swollen spleen--I find it insane I had no other noticeable symptoms, like bone pain, bruising, night sweats, exhaustion, headaches, etc., but I did have weight loss).  I just worry that because I am so slow to reach MMR (after 2.5 yrs on Sprycel).  Some people dx with a much higher WBC are already there and much faster.  I feel, for me, this it is not a good sign.  I have my next PCR Monday.  We shall see.  Otherwise, I like Sprycel very much.  I feel mostly GREAT on it.  I don't mind spending the rest of my life on it if it continues to keep me alive until I am elderly.

P.S. I am also on birth control and Zoloft.  So, I cannot cross those interactions off the list.  But both SSRIs and The Pill are old friends.  I never noticed the aforementioned side effects before.  But I suppose since dx, most of us are much more vigilant than we were before (maybe even, dare I say, "hyper-vigilant"?).

All the best,

Teds  



#16 Tedsey

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Posted 17 March 2012 - 12:47 PM

Pat,

With all that you are going through, I shouldn't be complaining.  I guess I am just scared.  I missed my last PCR appt. in Feb. because my kids were sick.  After taking Sprycel I noticed I am sooo allergic to flour, that I have to use a mask when measuring it!  Kinda a curse for a baker.  Oh well...livable.  I think it was you who mentioned that your allergies got worse since the drug (but that kind of thing, I know, changes all the time for anyone).  I did have the plugged up hear when I started S.  I left it thinking it would go away.  When it got to a point where I couldn't hear, I weilded a Q-Tip.  And a huge icky ball of rust-colored wax came out.  Sorry for the graphics.  But I never got it again.  The rushing is very specific to a few days before I was dx.  So, I am guessing there is some weird emotional connection I have with that.  No one can pin point what it actually is, but it seems to be common with CML.  It is both scary and annoying to me.  It beats out C-M-L, C-M-L with every screaming heartbeat in my ear and keeps me up at night.  BTW, I loved The Stand.  It is still my favorite SK book.  And I read it when I was in high school!  Although he is not the same as SK, I find that Haruki Murakami's Kafka on the Shore and especially The Wind-Up Bird Chronical are very good.  His books have a genre all their own.  Kinda horror/sci-fi; not super scary, just surreal. 

Heal fast,

Teds



#17 pamsouth

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Posted 17 March 2012 - 01:35 PM

Billie, 

Yea, I know about that Age Thing, Too!  Went to my Chiropractor Thursday, and I told one of the physcial therapies, (She is 24 years old) it's H__  getting old, she said well I have tendentious, too.    I should of said dang these TKI's are a bummer!!

Anyhow Billie, I got a smile on my face, as i got a special package in the mail today!! 

You are one in a million, a person of her word, for sure!!  Thanks a bunch.

Sending hugs xoxo

PamSouth


PamSouth


#18 Tedsey

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Posted 17 March 2012 - 05:04 PM

For the record, I was thinking more along the lines that it was the CML instead of side-effects.  That's why I was asking.  Docs cannot explain, but don't rule out anything.  Just thought I would throw it out there to see if the symptoms may be side-effects because I don't think I really notice much on Sprycel.  Just a few things changed after taking the drug, like headaches and worse allergies, but the whole climate is changing, literally.  I am also aging.  Who knows?  I feel great otherwise.  Just freaked out. 

Thanks everyone!  It is nice not to feel so alone with all the unknowns.

Teds



#19 hannibellemo

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Posted 17 March 2012 - 05:50 PM

Tedsey,

You have every right to complain - I remember what yo went through to get to this point! It's a good thing you're a woman and strong enough to tolerate it! 

I also had the rushing noise in my ear when I was dxed and I think it had everything to do with thick blood. My platelets were over 1.25 million and I think yours were pretty high, too, as I recall. Perhaps not, it' hard to remember much anymore.

I just tried to get into Neal Stephenson's REAMDE (yes, that's how it's spelled). I'm just too old to be able to follow the virtual world gaming technical aspects of the book. I'm still trying to get through Mad Alice on the PS3 (I love that game but I have to have my son over to get me through the parts where I'm just not coordinated enough to do it myself. You should see me at Angry Birds; I don't know why I love this crap it's so embarrassing!

I keep picking up Marukami's 1Q 84 at the library and putting it back because I think it will be too strange. My idea of science fiction is still Stranger in a Strange Land

Take care,

Pat


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>


#20 Guest_billronm_*

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Posted 17 March 2012 - 09:51 PM

Dear Pam,

   Thank you, I felt so guilty having that  when I knew someone else could use it. I haven't been on the board much, my pcp put me on another bp med and it sure does make  me tired. And I only take 1 at bedtime, then in 3 more days I have to take it twice a day. I hate this stuff. This is bp#4 I sure hope I can take it I might be running out of options.  Enough of that crap,  Happy St. Patricks Day. The weather has been so nice Ron has a bad case of spring fever. He's been riding the bike everyday, and today he bought another rose bush and planted it. He's going to make it snow.   Lots o luv Billie






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