Jump to content


Photo

Broken bones???


  • Please log in to reply
31 replies to this topic

#1 tazdad08

tazdad08

    Advanced Member

  • Members
  • PipPipPip
  • 141 posts
  • LocationTennessee

Posted 20 December 2013 - 05:44 PM

Are broken bones more common on tasigna, or any other CML drug for that matter? I never had unexplained breaks until now.


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#2 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 20 December 2013 - 07:31 PM

Hi:  That is a good question.  Are you on anything for GERD, for instance I have been on Nexium for 13 years.

I know that Nexium depletes you of Magnesium which we need for our bones and muscles.  I have been on Gleevec for 13 years along with the Nexium.  I have started to take a Magnesium supplement, and want to get my level checked.

     With Gleevec some of us have suffered with terrible foot and hand cramps.  I have had them constantly for years, but they have gotten worse for me.  I worry about the possibility of a broken bone.

     I was going to post to ask if anyone who has been on Gleevec long term like me, is having terrible problem with the cramping.  I will be driving down the road and my foot just curls up on me, or my fingers.

    If I am on the computer sometimes my hands just curl up with terrible pain.

Susan



#3 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 20 December 2013 - 08:29 PM

Hi Susan,

  I sure hope things are getting better for you and Gary. When I was getting an iron infusion, the man next to me was getting a magnesium infusion. Maybe you should ask your Dr. to test your magnesium level.

                                                                                                                              Billie



#4 Marnie

Marnie

    Advanced Member

  • Members
  • PipPipPip
  • 396 posts

Posted 20 December 2013 - 10:13 PM

Hi, Susan. . .I'm not on Gleevec any more, but I had horrible hand and foot cramps while I was on it.  I had a couple of motorcycle instances that were pretty scary.  Taking the trail bike up a steep, rocky section and my clutch hand froze up with a cramp so I couldn't let the clutch in or out. . .very scary on a rocky section.

Another time I was riding the beemer to work and my foot cramped up so badly I had to pull over (didn't know if I was going to be able to get the bike on the side stand without dropping it), and then had to pull off my boot and massage my foot for about 10 minutes before I could get back on and finish my ride in to work. 

Since switching to Sprycel, I haven't had another episode of hand or foot cramping.  On Gleevec, I had them frequently, and some were really bad.

Good luck and happy holidays.  I hope you are able to sit down and relax for awhile.  You certainly need it!

Marnie



#5 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 20 December 2013 - 11:18 PM

Hi Marnie and Billie:  This has just put the icing on the cake with everything else going on, but listening to both of you I feel pretty certain now that its from the Gleevec.

    Those cramps are awful.  I also have bad discs in my back that are acting up, and I thought maybe the pain was radiating down the legs.  I usually get bad sciatica, but its not like that.  ITs a definite tightening of muscles, and sometimes I am up and down all night with the cramps and ice packs.  My left ankle is giving me trouble right now.

Have a great Christmas

Susan



#6 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 21 December 2013 - 12:19 AM

Hi Susan,

I was getting a number of foot and leg cramps, but found a dosage reduction to 300mg Gleevec made most of it disappear.



#7 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 21 December 2013 - 09:42 AM

What kind of unexplained break do you have?! Cramps that break bones need to be taken seriously if that's what you're talking about here. Can't remember anyone mentioning this issue before; so I don't think "common" is a word that should be used in this situation.

The 9 months that I was on G I learned never to stretch first thing in the morning. I would amuse myself by watching my toes curl and uncurl, spread and unspread all by themselves. It was pretty interesting. I found the worst cramps to be the ones in the little muscles that run down the side of the leg over the ankle. There was just no good way to stretch them out.

Like Marnie, they completely disappeared with Sprycel. Of couse, only to be replaced with another "ïnteresting" set of side effects.

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>


#8 Marnie

Marnie

    Advanced Member

  • Members
  • PipPipPip
  • 396 posts

Posted 21 December 2013 - 10:21 AM

Yep. . .I had the same toe cramping entertainment.  My fingers were worse.  They would move themselves into the weirdest contortions and then freeze there.  I'd have to use my other hand to pull my fingers back into the normal position, and it took a fair amount of brute strength to pull them back.  And it was always my left foot and left hand.

I do not miss those cramps one bit.

Marnie



#9 Tex

Tex

    Advanced Member

  • Members
  • PipPipPip
  • 2,998 posts
  • LocationFront Range of the Rockies, Colorado

Posted 21 December 2013 - 10:38 AM

Just a thought from outside.  I don't know if steroids are part of CML treatment at any point.  If so and you're taking some, they leech calcium out of our bones making it important to stay on top of our bone health.

If that's not it, I'm out of ideas.If you're on something like Nexium which has been mentioned, that is another possibility.  Now my understanding of Nexium is that it interferes with vitamin D and calcium uptake.  I've not heard that it leeches Mg but there's a lot I haven't heard of.  Either way, that might be an issue.



#10 tazdad08

tazdad08

    Advanced Member

  • Members
  • PipPipPip
  • 141 posts
  • LocationTennessee

Posted 21 December 2013 - 10:45 AM

Its the outter bone on my foot. Had an MRI with contrast on Thursday. The dr called my house on Friday and told my wife that I MUST wear this silly boot and that I cannot put any weight whatsoever on my foot. She also told her that she was sending the results to my onc....... I will know by the 31st


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#11 LivingWellWithCML

LivingWellWithCML

    Advanced Member

  • Members
  • PipPipPip
  • 60 posts
  • LocationAtlanta, GA

Posted 21 December 2013 - 01:20 PM

@Susan61 - I get the Gleevec-foot cramping too ... the whole "curl up in pain" sensation.  I get it pretty much every night before I go to sleep, although it doesn't last too long.  It's very annoying, and yes, it hurts!  My hematologist recommended tonic water to help alleviate it, but I've never tried it.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#12 pamsouth

pamsouth

    Member

  • Members
  • PipPip
  • 10 posts

Posted 21 December 2013 - 03:11 PM

Don't know about Tasigna.

Lower my dose on Gleevec sure helped with the cramps.  It also lowered the inflammation.  Inflammation seems to be the common cause of a lot of my problems.  Kidney doc said problem with low GFR kidney filters, is inflammation.  Also had high Ferritine, which is a protein cell that stores iron when you get to much in liver, doc said it was from inflammation.  Yep seem the common denominatior is inflammation.  Lost my good gall bladder because the bile duck was damaged due to inflammation.  I sometimes wonder how my pancreas is doing with all this inflammation.  I read up on the pacreas and that is one organ you do not want to mess with.  Problem is some things don't show up until to much dammage is done, irreversable.  So I chose to lower my dose and doc went along with it.  My FISH/PCR are not good but they remain stable.  If figure if the CML doesn't get me the toxic side effects on my organ will, so I chose that with a better qualtiy of life, that I can live and still do some normal things.

Now I take some supplement for inflammation and for the heart. Bromelain for inflammation, Fish Oil for cholestral, tryglycerides, Coq10 for heart Tumeric and Curcumin.

I got low in vit b12 so I took 4 weekly shots,  Vit B12 shot up for 96 to 800 so quit take it, then 3 month later it was over the 1000 range at 1060, I think.  Onc doc said it will just store the Vit b12 in the liver till i need it, and not to worry about it.  I can't below it went for so low to so high on 4 vit b12 shots.  Unless I ate a lot of vit b12.  I check the supplements and they don't have vit b12 so it is a mystery to me.  I certainly don't wnat to overload the liver with anymore stuff.  Gleevec is enough.  The kidney doc did say that even though Creatine was good it doesn't show up until you lose 60 percent function of your kidneys, the oncology doctor said not that much he would agree with mayb a loss of 30 percent.  But I am thinking he is mistaking that for the cut off of 4th stage kidney.  In any even they won't admit to anything be cause from the Gleevec, so there you have it ..  Like my cardio doc he tells it like it is, he doesn't have anything to gain from me taking expensive TKI.  Nope, Cardio doc says the inflammation is from the TKI's. 

PamSouth


PamSouth


#13 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 21 December 2013 - 08:31 PM

Hi Pat:  I know exactly what your saying about the outer part of your leg down to the ankle.  That is a big issue with me.  Gary keeps telling me to drink tonic water, like Dan mentioned.  I might try it, being nothing else works.  So tired of getting up during the night for a icepack.  The inner thigh is the worst ever.  We went out to dinner during the summer with Gary's boss, and when we went to get up to leave I got the worst inner thigh cramp ever.  I was standing and leaning over the table ready to cry.  Nobody in the restaurant even came over to see if I was okay.  I could have been having a heart attack God Forbid.  We got outside, and I had to do leg exercises out in the parking lot.  I had to swing my leg out to the side to get it to release.  Gary's boss told me to do that, as she has had that problem with leg cramps.

I was not even embarassed, I just wanted relief.  People were just walking by looking at me.

I lead a very interesting life to say the least LOL

Susan



#14 Tex

Tex

    Advanced Member

  • Members
  • PipPipPip
  • 2,998 posts
  • LocationFront Range of the Rockies, Colorado

Posted 22 December 2013 - 11:40 AM

I've followed this thread and I'm surprised to see ya'll talking about something that seems similar to something that cropped up after my SCT.  So, am I right that you're talking about a cramp down the muscles along the shin?  If so, that's something I know a lot about.  Not what causes it or anything but I had those every evening after my transplant.  The pain was excruciating.  I refused to let them make me cry because I was afraid that any additional shaking would make it hurt worse.

If that's what we're talking about quinine water works a little.  But every time I start drinking tonic water, I come across something claiming it can be pretty dangerous.  I'm not sure why quinine's bad but for the relief it gave me, it didn't seem taking any risks.

I don't have much problem with the pain anymore except in winter.  For years, I could count on those cramps coming back every winter and driving me nuts.  A few years ago I started on medical marijuana for recurring nausea.  I haven't had a cramp since.

I can still feel my shin muscles tightening up.  I'm feeling it even as I type these words.  But somehow it never slips over to a cramp, it stays at the tightening stage.  I can live with that.

I don't know if this directly applies to what ya'll are experiencing.  I've only heard of it from a couple of other post-transplant patients.  To run into it here in the CML page makes me wonder what treatment for CML might have in common with transplant protocols but I'm clueless what they are.

Still, this sounded so similar if MMJ is available to any of you, you might give it a try and see if it helps.

Blessings



#15 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 23 December 2013 - 11:12 PM

Hi Tex,

Tonuc water (Quinine) is one of the things suggested for this side effect.

I found my leg or foot cramps occurred more when I was dehydrated, particularly when I had to have a fluid tablet. They eased up when I reduced my Gleevec and have disappeared altogether now I'm off my TKI.



#16 Tex

Tex

    Advanced Member

  • Members
  • PipPipPip
  • 2,998 posts
  • LocationFront Range of the Rockies, Colorado

Posted 24 December 2013 - 10:50 AM

Great that they're gone.  That's all one can really ask for.  Well, we can ask for a winning lotto ticket  but we gotta take what we get.

Using quinine is actually a bit controversial (I mean, not a big one but nonetheless...) and there are many who say it's potentially damaging.  When I was having my cramps, one or two docs suggested it, others waved me off of it.  I've used it to no noticeable harm.  But I don't think I would anymore, especially with MMJ available.



#17 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 24 December 2013 - 06:17 PM

I never tried Quinine, but I did find celery seed helped, which I initially took for the fluid retention. Celery seed didn't do much for the fluid retention though.

Around 280 people get diagnosed with CML each year in Australia. You'd figure since I got unlucky with those odds, I would stand a chance with winning a large prize in the lotto, no luck so far.



#18 Tex

Tex

    Advanced Member

  • Members
  • PipPipPip
  • 2,998 posts
  • LocationFront Range of the Rockies, Colorado

Posted 27 December 2013 - 01:07 PM

Keep shooting.  That Lott's right around the corner.  Hey!  I got a bridge in Brooklyn for sale.  You interested?



#19 jjg

jjg

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 27 December 2013 - 05:58 PM

My distant cousins have won div 1, not once but twice. Not the same person but within the immediate family and some 20 years apart.  Guess CML is rather "common" by comparison.

The thing about tatts/lotto is that you have to buy a ticket - therefore my odds were always greater for CML. Although, I did have a housemate who was given a ticket as a thank you gift and it won div 3 which wasn't a multi million deal but we were poor students so it seemed pretty close.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#20 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 27 December 2013 - 10:27 PM

You don't happen to own London Bridge - I'm looking to have a bridge closer to Europe for holidays.






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users