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Severe Pain in Hips & Ribcage


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#1 Tedsey

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Posted 17 November 2011 - 06:46 PM

Has anyone had this?  I have been suffering for the past week and a half.  I have never had it this bad.  Only once, years before I was dx, I can remember something similar in my hips.  It was right after I had a baby, so it made sense to have such pain. 

This pain is so severe I cannot sleep at night and I am having touble walking.  Since my WBC have increased to normal and I am still waiting for my last PCR to come back, I cannot help but fear that the leukemia is going crazy again.

If it is the Sprycel, how come it is the first time I have had this while on the drug (been on it over 1 year)?   Is it wishful thinking that the drug is finally really cleaning house?

Teds 



#2 Happycat

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Posted 17 November 2011 - 07:02 PM

Teds,

One suggestion is a pleural effusion.  I've had pleurisy before (infection of pleural lining, with a bit of fluid).  It hurt, ribs, chest, back.  Haven't had pleural effusion, but I would think pain is similar. 

I also had a bout of muscle spasms around my chest and occasionally waist, just a few weeks ago, lasted a couple of days.  Pain made me breathe like when I was in labor.  But each spasm didn't last long, maybe 30 sec, tops.  Came in waves though, again, kinda like labor.  Went on like that for a few days, then subsided, with occasional one-off spasms every day or so.

Do you think it could be sciatica?  That would wake you at night and make walking painful.  But you usually feel that around lower back, and then down one leg or the other.

HTH,

Traci



#3 GerryL

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Posted 17 November 2011 - 07:41 PM

Hi Teds,

Are you able to give your specialst a ring - perhaps she can hurry your results along, plus you could talk to her about the pain you're feeling. If you're still doing well on the Sprycel (which I'm hoping your are) you will be able to sort out this other issue.



#4 VickiW

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Posted 17 November 2011 - 08:05 PM

Hi GerryL!

No PE here but I have had the same pain off and on for over a year+ now (I am well into my third year on Sprycel).  Comes and goes except for the pain in the ribcage.  That is present most of the time, just gets milder, then worse, then milder, etc.  Mine is mostly in my back at the lower ribcage, most often on the left side.  My Onc checked me out, even took an xray back in August, and could find no obvious cause.  I did have a real problem with my knee recently ( a flair up of an old injury) and my Onc gave me permission to take Ibro for a few days and the pain in my ribs and hips disappeared comletely and for over a week after I stopped taking the Ibro.  (I am also on Neurontin for neuropathy and it has no effect on the ribcage or hip pain).  This leads me to think it is just the same old bone pain .  Why it just "sticks around" in our ribcage and hips, might be a question for the learned "what's his name"   I have hovered around PCRU for nearly a year now, getting to "0" then slightly out, then back in and my Oct. counts were a solid PCRU so I wouldn't be too worried about the CML getting crazy.  I know I thought the same thing at first (panic is so fun, isn't it?hehehe) but after closing in on 2 years of this, I have just come to accept this as just part of taking Sprycel.  Sorry I couldn't offer you a solution but I hope that I have at least eased your mind a bit.

Vicki


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#5 VickiW

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Posted 17 November 2011 - 08:16 PM

Also forgot to mention I have had the hip thing too as well as the chest spasms, but I can't remember having those more than once or twice.  The first time with the hips was clearly the worst and I still have occasional trouble sleeping (like last night) but overall it has gotten much milder and just seems to "cycle" just like the rest of the Sprycel side effects tend to do, at least with me, eventually getting milder, although the kind of nagging "ache" is there most of the time but that might be because of the peripheral/motor neuropathy.

Should also mention that I was dxd with neuropathy because my legs were hurting so bad after I went to bed sleep was impossible.  Turned out I had had PN for quite a while just didn't know it.  I was excusing the horrible pain in my feet etc. to getting old, CML, whatever.  Just mentioned because you weren't specific about the location of the pain but the time was familiar.

Message was edited by: snow puppy


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#6 Trey

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Posted 17 November 2011 - 08:39 PM

Could you be more specific about where the pains are located?



#7 Tedsey

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Posted 17 November 2011 - 10:41 PM

Thanks everyone.  I don't have spasms or shooting pain down my legs.  I get achy in my lower ribcage and searing pain on the upper part or my hips (iliac crest--bi-lateral), and down the sides of my hips to my joints.  I get the pain in the joint on my left side.  On this side, it can feel like a shooting pain if I step a cetain way, but it is only contained in my hip (doesn't go into my leg).  My hips hurt way more than my lower ribs.  The ribs mostly ache enough to be annoying.  Luckily, my back is fine.  Since there is not much anyone can do for my aches and pains, I guess I will have to endure this.  I feel like my onc would say, "Uh huh".  And the nurse would say I could take some Tylenol if I wanted.  This is the usual response.  Neither response does much for the pain.  But I am an unusual case with such low PLT for two years since dx.

Teds



#8 BY196

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Posted 18 November 2011 - 09:39 AM

Delurking to say I have the exact same kind of pain.  I have been on 400 mg of Gleevec since Jan. 2011 and the pain didn't start until around May.  Lately, it's intensified.  Ibuprofen doesn't seem to do much but sometimes a small amount of muscle relaxant makes it hurt less. 

Beth



#9 Trey

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Posted 18 November 2011 - 09:58 AM

Choose one or both:

1) Your body just isn't used to having any real blood in it so it is now saying "what's that about?"

2) TKI drugs can cause bone reformulation/growth and can result in pain



#10 mabdou2005

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Posted 18 November 2011 - 10:27 AM

I think that kind of pain is relataed to dorsal spine i have the same kind of pain in hips and ribcage becouse i have a disc protrusion in DV 9-10

I dont hope to any one that problem but i think you have to go to spine doctor



#11 Happycat

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Posted 18 November 2011 - 04:27 PM

Teds,

Yeah, reading through your updated description of the pain, it does sound like a disc and/or nerve is involved.  (I have a bulging disc in my neck from whiplash injury.)   The phrase "down the sides of my hips to my joints" is what sounds like nerve-related pain to me.  In other words, it is travelling along a major nerve.

My neurologist I see for my neck said that shooting pain, tingling or pins and needles are all indicative that a nerve is involved somehow.  In my case, the bulging disc puts pressure on the root nerve, and I get tingling feelings down my left arm.  When I had sciatica when pg, the deep muscle progresterone shots I had to take started irritating the sciatic nerve, and I definitely had a shooting pain with that.  I had no back pain at all.  (Makes sense, since the progesterone shots were done in the hip, not the back.)

I'd forgotten about my chest pain.  I also had chest pain about a year ago (pre-dx), again related to the accident.  I would sit down and feel like someone had put my chest in a vise.  The pain would originate in my neck, then wrap around my chest, like a big squeeze, hard enough to take my breath away.  It sometimes lated 10-30 sec.  Turns out that was muscle spasms - needed deep stretches in physical therapy to get rid of it.  But I also needed to see a neuro to get it dx'd properly.  I had been seeing an orthopedic, but he ended up referring me to the neuro on that one.

Rather than endure, I would see someone.  There may be something simple you can do for relief, like lay a certain way in bed to take pressure off the area (worked for sciatica).  Or, take muscle relaxers to stop the spasms.  Or get cortisone shots.  Anyway, don't suffer because you think it's a TKI side effect that you can't change.  You might have simply injured something lugging the kids around. 

HTH,

Traci



#12 Judy2

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Posted 18 November 2011 - 05:04 PM

Hi Tedsey. Years ago I had pain down my left leg and into my foot but no pain in my back, it turned out to be a disc problem. Every so often it acts up. It probably is a good idea to have it checked out by an orthopedist. The answer could be as simple as physical therapy. I've learned not to assume anything as all last year I thought my physical symptoms were related to stress. Boy, was I wrong!!!

Judy



#13 Tedsey

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Posted 18 November 2011 - 05:12 PM

Traci,

I don't doubt that it could be some kind of pinched nerve, herniated disc or the like.  However, the pain is not shooting, except for my left hip and it is pretty localized to the joint (come to think of it, I am not even sure it is really shooting, but just very sore).  The overall pain is more of a intense ache, I guess.  It is so hard for me to describe pain.  And it is so hard to determine what is normal aches and pains and what is the leukemia.  When I was younger, I had a lot of back troubles (L5; sacrum) .  However, miraculously it disappeard.  Who knows what it was?  The pain in my hips comes and goes (but this last episode was the absolute worst, it never really kept me up at night before). 

Last night I finally got some respit.  I hope it is the good cells multiplying and my body adjusting like Trey mentioned.  Wish I could take ibuprofen, but wiht PLT in the 20-30 range, I am not a candidate.  The unleukemic population or those with normal PLT have no idea how the casual conversation of popping an Advil leaves me envious.  It's even worse when they suggest I do it too, for whatever reason.  So, I guess I shouldn't complain at all.  Thank goodness for this board.  Oh well...  It could always be worse, right? 

Teds 



#14 Pin

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Posted 18 November 2011 - 06:25 PM

Hi Teds,

I'm with Trey, hopefully it's just your bones growing back If the pain continues though, I would definitely see someone, especially as it is making it hard to walk.

Just let me preface this with, - "I really don't think it's this"...but recently on another board there is a young girl who was recently diagnosed with AVN in the hip joint after taking Gleevec: http://talkbloodcanc...&limitstart=114

I'm fairly sure she had pain before diagnosis/treatment, the condition is very rare and I have only read of it occurring in children. But anyway, my point is - sometimes it's worth getting things checked out if only to rule them out. I would hate to think you are in pain and could be treated if they work out what it is. I have a lot of back pain I think at L5 also (must be a popular site!) and my sports doctor wants to have a scan just to rule out any bone abnormalities. I feel it may be unnecessary as I really think it is more of a muscular problem, but as it has been ongoing pain for about 2 years it might be worth it, if only for the peace of mind.

All the best Teds - Glad it was a bit better last night for you.

Cheers,

Pin. xxx.


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


#15 Happycat

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Posted 21 November 2011 - 07:32 PM

Teds,

Understand the ibuprofen jealousy. I've also been banned from taking it. Have you tried Icy Hot or BenGay on the sore spots?  It's basically localized aspirin, so it won't get into your bloodstream, should be safe for you. I'm allergic to aspirin myself, go into anaphylaxis, so if I can take it, I would think it would be okay for you. I smell like my grandma, but I feel so much better using it. I like the kind that comes in a stick like deodorant.  No need to get it on my hands.

Tomorrow I get cortisone shots in my neck, just to get me through the holidays.

Hope you feel better,

Traci



#16 Tedsey

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Posted 21 November 2011 - 08:01 PM

Sorry about the shots!  But the stuff works so well (even for anaphylaxis--been there).  As I child, I had such severe eczema.  I was given shots of cortisone, to control the outbreaks.  Thanks for the info on the Icy Hot & BenGay.  I slept crazy on my shoulder the other night and it kills.  I could use it for that too.  Hate to say what my grandmother smells like (coming from the old country, she was not into bathing that much).  But, she is still alive and kicking at 94.

All the best,

Teds 



#17 markmendonca

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Posted 21 November 2011 - 08:57 PM

i am on t for 2 months and i started to have pain in the lower back and hips so bad f-ck it hurts . but it lasted only one week .






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