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Tasigna and muscle pain


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#1 mariebow

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Posted 26 July 2015 - 10:10 PM

  Hi everyone, I have finally been able to log in after all this time.  I have been on Tasigna for a little over 3 years and have been in remission for three years.  I have missed everyone on here so much.  I want to ask if anyone have had gluetus maximus muscle pain in their buttocks, I have been bothered with this off and on for about a month.  If others remember I also have recurrring left ribcage pain from injuring my ribcage by bending down in a standing position when I was working in my yard, they finally told me that I have a tear in the cartilage that wraps around my ribs.  Also I have recurrent bouts of bad fatigue and still have times when my scalp seems like it will itch off.



#2 Billie Murawski

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Posted 27 July 2015 - 01:31 AM

hi mariebow,

 Your post isn't showing up on the cml board, I have that problem too the only way I can do it is on the front page click on forum then I click on one of the questions from someone I know is on the cml board for instance I clicked on Mr.Tee,s question and that took me to the cml forum don't answer the question but look at the top of the page and click on cronic myeloid leukemia and that will bring you to our discussion board I know that's not the right way to do it but thats the only way I can figure it out, maybe someone else can explain it better but I'm such a computer idiot I have to try different ways.   Good Luck Billie



#3 mariebow

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Posted 27 July 2015 - 11:12 PM

Thanks Billie



#4 gerry

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Posted 28 July 2015 - 09:42 PM

Hi marie,

your post does appear under the CML threads, not sure what is happening with Billie's access. Glad you're able to log back on. 

You're not having sciatica related pain are you, that can appear in the butt cheeks as well. 



#5 Billie Murawski

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Posted 28 July 2015 - 10:23 PM

Hi Marie, Hi gerry,  My access needs to learn how to use a computer, I have got to get to the library and see if they can help me I have a mental block with computers. Marie, gerry might be right that makes a lot of sense. I had 2 bouts of sciatica and that's where it starts and then goes down my leg the only thing that helped me was walking. It lasted quite a while too.

gerry do you have trouble with yours too boy I don't want to feel that pain again. 



#6 Trey

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Posted 29 July 2015 - 07:53 AM

The L&LS folks move posts to where they belong, so it is not necessarily a Billie thing (this time).



#7 Billie Murawski

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Posted 29 July 2015 - 06:51 PM

Hey, Trey what is a Billie thing? Okay I get it, but I do eventually figure things out sort of! You should hear me give directions to someone, I know what I'm trying to say but somehow it doesn't come out right, Ron always grabs the phone from me and says something dumb like go 2 blocks and turn left geeze I was saying that too but in a roundabout way.



#8 gerry

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Posted 29 July 2015 - 08:43 PM

When I have had it, I usually go to my chiropractor first and if that doesn't work then I see my GP and get some valium. Valium was originally created as a muscle relaxant, before they started giving to the housewives in the sixties.



#9 pammartin

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Posted 29 July 2015 - 10:18 PM

Gerry, so that was what my mother took. I thought it was birth control pills.  :D

 

Billie, I am also awful at direction giving.  I know how and where to go to get somewhere but it does not translate with my mind and out my mouth.  You cannot tell a stranger to drive about 5 minutes down the road and make a left turn at the oak tree that is only half there because it was struck by lightening a few years ago.  Then I have to tell them how nice the tree was before.  I have lost them and their attention after I mentioned the lightening struck tree. 

 

If they would only look and listen my directions would work fine.



#10 gerry

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Posted 29 July 2015 - 11:21 PM

Or worse still when you tell the taxi driver to take the next left and he repeats that back to you and you say right (as in correct), and he turns right and tells you it is your fault. lol



#11 Billie Murawski

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Posted 30 July 2015 - 03:39 AM

That's right gerry, after Ron got out of the hospital I did the driving for the first few days and I found out he doesn't know right from left

(right)?  Even when I went through the red light he got all bent out of shape and yelled at me, I told him to quit complaining, they saw me coming. I think that's when he started rolling his eyes at me, Imagine a man his age doing the eye roll!



#12 Billie Murawski

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Posted 30 July 2015 - 03:53 AM

Pam if you come to visit me it's really easy just go north until you run out of road, head west until you come to the 3rd bait stand I'm right around the corner less than a mile from the lake where they stock all the trout every year I think everyone from Pittsburgh comes here to fish.It's called Trout Run now those are good directions aren't they?

 

Or worse still when you tell the taxi driver to take the next left and he repeats that back to you and you say right (as in correct), and he turns right and tells you it is your fault. lol

Gerry, That show Karl P is on is a show called an idiot abroad on TLC(it's to funny now we know where jpd is).



#13 Damerault

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Posted 03 August 2015 - 08:30 AM

Hi Marie, I am also on Tasigna and have been on a lower dose for about 1 year. I am on a low does because the Tasign caused my PLTs and HGB to go very low. They are rebounding now. I don't know if it will make you feel better or worse that I am experiencing some of the same symptoms as you. I too struggle with bouts of bad fatigue and still have times when my scalp is very itchy. I also suffer from headaches which I did not have prior to Tasigna, those are currently being controlled by a daily does of Depakote. I am also experience some aches and pains that I did not have prior to Tasigna, though no one has told me they are related. I have a reoccurring pain in my thumb on my left hand and pain in my left knee. The knee pain is getting pretty bad as I can't put weight on it at times and probably need to go to an orthopedic, but petrified of having to have an MRI. Have you had a Bone Marrow Biopsy recently? After my last one I experienced some pretty bad muscle pain in my butt like you describe for a pretty long time after.

 

Like I said don't know if this makes you feel better or worse about our shared experience, but it makes me feel a little better that I am not alone. Wishing you continued good health. Diane.


11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000



Be well, Diane.


#14 Antilogical

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Posted 03 August 2015 - 05:50 PM

I kind of enjoy the MRIs.  I opt for both the ear plugs AND the headphones, and I ask for the local country station.  I entertain myself either by counting the number of songs played during each MRI segment, or by counting the number of seconds to see how well I match up to what they said it would be.  Mostly, I'm happy not to be bothered by anyone at work.  And it's pain-free!


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.


#15 Billie Murawski

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Posted 03 August 2015 - 10:33 PM

AL, I never had an mri or even seen one done is that the thing where they stuff you in a tube and tell you to relax then they walk away for an hour? Not sure I could do that.

  Hope you been feeling okay, is the heat getting to you yet, I know when I go to Ambridge the heat nearly kills me there's no air there.



#16 Antilogical

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Posted 04 August 2015 - 05:34 PM

What?  No air in Ambridge?  How unfortunate.  I am the only person I know that loves heat... stifling, fire-breathing heat.  I am the only person in Pittsburgh that is totally happy with the weather.  Ahhhhh.....

 

Yes, most MRIs are cocoon-like - and being the wildlife-lover that I am, I love cocoons, and MRIs.  They don't walk away from you, though.  They talk to you through the speakers - as much as you want them to.  I tell them to tell me WHEN and HOW LONG.  That's all I want to know.  Then I go back to my cat-nap.


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.


#17 Billie Murawski

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Posted 05 August 2015 - 12:48 AM

Hmmmm,    An owl in a cocoon that loves the heat and takes cat-naps. What tki did you say you take?



#18 Terran

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Posted 06 August 2015 - 09:16 PM

I think I would love an mri. Any excuse to do nothing for a while is good with me. Once when my kids were little, I fell asleep while getting my teeth cleaned. The staff was very amused.

#19 Billie Murawski

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Posted 09 August 2015 - 12:00 AM

Terran,

  Did they give you the happy gas? I had it once and all I remember was Dumbo the elephant flying me all over disney world, why couldn;t it have been George Clooney,or Tom Selleck, Robert Redford, no I get Dumbo geeze! I did ask the dentist if I could buy some of that gas of course he said no. Sometimes my mind really worries me. I fall asleep easy during the day but I can't sleep at night, and no I don't nap all day it's really getting annoying, Do you have any trouble sleeping at night? I could use some advice.  Billie






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