21 replies to this topic

[Pinkbubbles9642]

Hi friends! I was just wondering if anyone else had or knew if it was normal to have massive hip pain?? I know some of you reading this probably have read my other disscussion about being new and everything going on with being send to specialist and all. My hips have been hurting with horrible pain for over a month now. It's a constant tight and uncomfortable pain and sharp stabbing pains come randomly. Even just sitting here typing this I'm in pain and I don't get why or if its normal. I did tell my specialist and we are going to go more into details on the 6th after he gets all the tests back that he ordered.

Does anyone else have hip pain? Whether tight and stiff or stabbing pains, or am I just an odd duck?

[CallMeLucky]

Can you clarify, is this pain from biopsy or something else.  My hip was very sore for a long time after the biopsy.  I've also had plenty of other aches and occasional hip and other joint pain.  You'd think I was an old man

[Trey]

There are two main reasons for joint pain related to CML and/or the CML drugs.  Many of us had joint pain prior to diagnosis because of the massive numbers of blood cells causing internal marrow pressure (esp the hips).  After starting the CML drug, and the numbers start decreasing, there can be a side effect pain caused by the drug.  The exact reason is not clear, but the TKI drugs do interfere with the body's mineral usage to some degree.  So if your WBC has dropped considerably, then it is likely just a side effect that most of us have experienced, and it often decreases over time.

[Pinkbubbles9642]

It's a sharp pain in my left hips side and then it turnes into a burning sensation.. my doctors gonna watch it but it's random and it hurts. I know my other hip pain is from the CLM but i don't know about this.. and no my WBC has actually gone up since 2 weeks ago.

[Happycat]

MJ,

I'd probably go see an orthopedic doc if it kept up.  Could be something else not cml-related. Bone spur, pinched nerve, etc., might be the cause.  I certainly experienced hip pain carrying the twins (irritated nerves from shots,then tendon pulls).  Friend of ours just had a baby and she is hobbling around with hip pain on one side. 

Hth,

Traci

[Laxelrod]

My son (15) was diagnosed with CML in October. During the month prior, he had debilitating hip pain.  He had an MRI and we were told he had a deep hematoma. It was very mysterious because he didn't have an injury that he could remember. That was the same time that he was pale, coughing, having night sweats and had lost about 20 pounds.  We didn't recognize the signs of leukemia but as soon as he got a blood test it was obvious.  Trey - your explanation of internal marrow pressure makes a lot of sense.  I never really got a good explanation for the hip pain but I knew somehow it had to be related to the cancer.  Anyway, the pain eventually went away.

He's been on Gleevec for three months now and tomorrow he goes in for his first bone marrow test.  So far, he is tolerating the medicine well and with the exception of some fatigue, he feels healthy.

[AmyH]

I'm having some really bad hip pain right now and I've actually had this weird hip pain for awhile now...so I'm pretty sure its part of CML.

[Trey]

Another possibility is that a nerve was nicked during a BMB procedure.  I hesitated to mention this because it is rare, but it happens.

[scuba]

From MJ, "Does anyone else have hip pain? Whether tight and stiff or stabbing pains, or am I just an odd duck?"

Hi MJ - Is that you?  The one in yellow?

[pamsouth]

Scuba, I go to a chiropractor and physical therapy off and on for the last several years.  Yes I get severe hip pain. But then I also suffer neck and shoulder pain and muscular skeleton pain through out.  I think it is from the CML, because I had it before I started on Gleevec. then maybe again From CML + the Gleevec.

Pamsouth

[Pinkbubbles9642]

That would be me if the duck smacked its head on the stone lol (I'm kinda a clutz too) : ) Cute pic though thank you

[Pinkbubbles9642]

I knew it was a possibility of the BMB I had to sign a paper stating I knew. When I told my doctor about the pain and where it was he said it was not the nerve near where the BMB was performed so we are going to watch it

[Pinkbubbles9642]

I knew it was a possibility of the BMB I had to sign a paper stating I knew. When I told my doctor about the pain and where it was he said it was not the nerve near where the BMB was performed so we are going to watch it

[Lizzybee]

I also had pain in my left hip that started about two weeks before I was diagnosed.  I thought it was caused by a hiking trip!  After I was diagnosed and treated, it went away except for occasional twinges.

[luvmybees24]

I had my BMB on 11/14/11 and my hip still hurts. They had a hard time because I am overweight and  had to use a blade instead of a needle. So not looking forward to the next one.

[kpymm@fwcool.co.uk]

Hello,

i have a 10 year old nephew who all my family are concerned about. he has been very ill and tired for about a month now. For 2 weeks he was on crutches as it was hurting him around his hip it is to painful to walk so the hospital said he had hurt his ligaments. after 2 weeks of been on the crutches and getting worse sleeping all day, my brother took him into hospital, he has been there for nearly a week now and they said his ligaments are fine it was a wrong diagnosis, they thought he had fluid on the hip but there was no fluid showing on the ultra sound and now they are saying its more serious and they think he has something wrong in his bone, maybe a bone disease. thats all theyve said they dont seem to have a clue or be doing anymore tests just yet theres talk of an MRI. in the meantime he is getting worse and on morphine and unable to walk as his hip is too bad.

we have tried to read some things from forums to see if anyone has experianced the same symptoms and after reading a few different things we are concerend it may be down to his bone marrow/leaukemia, but the doctors wont test for that at this stage they say. does anyone know of a test we could ask to be done?

[hannibellemo]

Hi, kpymm,

Sorry to hear your nephew is in so much pain. An initial test for leukemia would be fairly simple - it all starts with a blood draw where they look at the complete blood count, whites, reds, platelets, etc.  and a differential panel where they determine what makes up the white blood cells ( and other things). I can't believe that he hasn't had those by now in the investigative stage. You might want to check. If they found anything unusual they would surely look further.

Good luck to you all and I hope it's just "growing pains" and nothing more!

Pat

[Trey]

Your nephew should have a Complete Blood Count (CBC) blood test done if it was not done already.  It would show if he has a high white blood count (WBC) which can indicate some forms of leukemia, especially CML.  The severe hip pain was probably my first symptom before I was diagnosed with CML.  And the extreme fatigue should have prompted your Doctor to do the CBC.  I would want to have a CBC done first before anything else.  It is a very simple blood test.  Of course his pain certainly could be from other things.  Let me know how that turns out then I can give you more suggestions.

[kpymm@fwcool.co.uk]

Thank you to all of you for your help.

my nephew is still on the morphine and in lots of pain they have now said they are moving him this morning to a specialist in a different hospital. hopefully he will be having an MRI at the new hospital and I have told my brother to ask them to do a CBC test as youve suggested Trey, thank you. we dont understand what is wrong with him just know how hes been and as ive said from reading up about his symptoms we are a bit concerend.

he is so skinny and tired all the time, getting migranes and colds he picks up from school and he cant walk without crutches we just want the doctors to find out what it is and treat him for it, until the hip pain we just put it all down to normal growing pains.

hoping this new specialist will look into things better than his last doctor whos not really done much and hope he does the CBC so we can rule it out.

do you think his symptoms would warrant asking for the test? we dont want to jump to conclusions and waste the doctors time.

regards

kerry

[CallMeLucky]

A CBC is a very simple, routine, and inexpensive test.  They should have done one already.  I would not hesitate to ask.  Just keep in mind that a CBC will not answer all your questions.  If the blood counts are abnormal, that can point you in the right direction and would indicate some potential issues, however if his counts are normal, that would not be a definitive "everything is fine".  They may have to continue to dig deeper, but a CBC is a good place to start.  Best of luck