33 replies to this topic

[rnowinski]

I have been on Sprycel for 3 months now. I started at 50 mg and a month later moved to 100mg. About that time I developed leg pain at the top of my left leg. There are days that it is so bad, I can hardly walk. I do not recall injuring myself. It feels like a pulled muscle, yet when I rub my leg.... the muscle is not sore. I had an xray, and an MRI done last Friday and I am still waiting for the results from the MRI. My doctor is so frustrated with me. I think that I am the only CML patient he has ever had and he has moved me from Gleevec (wasn't working), Tasigna (damaged my liver) to Sprycel. He is doesn't feel that this leg pain is caused by Sprycel since it is only one leg that hurts. The doctor is saying that if it is Sprycel, he is going to put me on the transplant list, however, he says it doesn't look good for me since I am too old for a transplant (58 years old). He has made me really nervous. Is there anyone on Sprycel that has had this muscle pain???????

[amcantley]

I'm sorry for all the difficulties you've had. Although I'm still new to all of this, I've been on Sprycel 100mg for two weeks. The leg pain has been quite severe at times.

[rnowinski]

amcantley: Is your pain in both legs or just one? Mine is just in one leg which is why my doc doesn't think it related to Sprycel.

[chriskuo]

Are you taking other medications? There could be an interaction.

There are a number of us who have taken more than 3 TKIs. If your Dr is frustrated with you, he is not the right one for you.

You should get a second opinion from a CML specialist at a top academic hospital before having any kind of discussion about a transplant.

[rnowinski]

Are you taking other medications? There could be an interaction.

There are a number of us who have taken more than 3 TKIs. If your Dr is frustrated with you, he is not the right one for you.

You should get a second opinion from a CML specialist at a top academic hospital before having any kind of discussion about a transplant.

They did give me an antibiotic that did have a drug interaction....but that was weeks ago. I definitely will get a second opinion before a transplant. Thanks for the advise.

[dede5]

Sprycel can cause bone pain and, I think, muscle pain. Not sure if it matters whether it's one leg or two. I have 0 medical knowledge, but I've been taking Sprycel 100 for nearly 5 years. One thing I've noticed on this board that a lot of us have in common, is that the onc's deny any link to side effects, and some can be frustratingly defensive about. Nevertheless, we all know we have them. The good news is that a lot the side effects will fade over time. I've had some fade and others I've had to learn to live with. One of the latter is bone pain, but it's just off and on. I agree about a second opinion.

[Billie Murawski]

when I was on Gleevac I had terrible muscle spasms, then I went on Sprycel and my pcp told me to take 250mg of magnesium a day and I haven't had a muscle cramp in 5 years.   I have rls and the magnesium helps with that also.

So many doctors have very limited knowledge about cml and tki's and the only way they are learning is from what we tell them. My cardiologist is reading up on it he didn't know what a pah was so he looked it up while I was there. And I tell all my doctors about the new problems and side-effects that are affecting us from tkis, Thanks to Trey I have come up with a couple big words and the docs seem to treat me nicer example {she's not as dumb as she looks) hee hee little do they know.

 It's always good to get a second opinion. Good Luck   Billie

[Billie Murawski]

Sprycel can cause bone pain and, I think, muscle pain. Not sure if it matters whether it's one leg or two. I have 0 medical knowledge, but I've been taking Sprycel 100 for nearly 5 years. One thing I've noticed on this board that a lot of us have in common, is that the onc's deny any link to side effects, and some can be frustratingly defensive about. Nevertheless, we all know we have them. The good news is that a lot the side effects will fade over time. I've had some fade and others I've had to learn to live with. One of the latter is bone pain, but it's just off and on. I agree about a second opinion.

DeDe, You've been on Sprycel for 5 years? What are your numbers, I've been on it for 5 years also but I have slowly been weaned down to 20mg. and I've been undetectable for 5 years. I don't seem to feel much better on the lower dose but my anemia is a lot better.

Maybe you should talk to your onc. Remember he works for you. Good luck Billie

[kat73]

rnowinski - Right off the bat, 58 is NOT too old for a transplant.  BUT, he shouldn't have even freaked you out about having one.  Most CML cases are treated with one of the four (or is it five, now?) TKI's successfully.

 

More info is needed:  Why did your onc think Gleevec was not working?  On what basis did he diagnose liver damage?  What were your initial numbers?  FISH?  PCR?  Is he following NCCN guidelines in your dosages and moving so quickly on to another TKI?

 

You most definitely need a CML specialist or at least a hematologist oncologist who has many CML patients on different TKI's and has followed them all for many years.

 

I am hoping Trey will come along here and help you. 

 

I'm real sorry about the leg pain.  I am on Sprycel and have never experienced the muscle or bone pain that others have reported on Gleevec and Sprycel.  My husband has sciatica, though, so I'm wondering if that could be the source of the pain?  That seems to be something that comes out of the blue and has nothing to do with injury or fitness, but seems to go along with aging.  I was 58 when I got CML and I definitely didn't feel old enough for CML OR sciatica or anything else bad, but that's life. 

[hannibellemo]

rnowinski,

 

Welcome! You will learn here that response is what it is all about. Response to the TKI, response by our docs to our concerns, response to our fellow passengers on this CML bus when they post.

 

It would be helpful if you let us know what your PCR/FISH numbers were at diagnosis to current. Sometimes doctors who don't have any experience with CML are too quick to jump the gun and change medications and some are too slow. There are many people on here who have had issues with liver enzymes on Tasigna; many of those were temporary blips. If you have those ALT/AST numbers that would be helpful, too.

 

Because you are having such issues I agree that it would be a good thing to look for a physician who has had way more than 1 CML patient.

 

I've been on Sprycel since 2009 and the road has not always been smooth so it helps to have a compassionate doc to help with the navigation.

 

Good luck and I'm glad you posted.

[Dona_B]

I had knee pain in my left knee but mainly I have back spasms. I've had them so bad, the back specialist and chiropractor recommended physical therapy. The physical therapy was helping so much that I agreed to have a third BMB before I refused to. Back spasms came back with a vengenance so I quit my seasonal retail job and the chirpractor. (I worked in a park.) The five minute walk up the hill and back down again after work did not help. So now I just try to take it a little easier and not push past. Occasionally I use neoprene exercise belt and cypress essential oil. (The problem seems get worse before that time of the month.)

 

What cured my knee pain (and I don't recommend it) was to skip my 80 mg Sprycel for a couple of days. Wish it would have cured my back too but no such luck.

 

For awhile I was reading a woman's blog who is a little older than me and three years ahead of me in diagnosis. She decided on Sprycel and after reading her experience decided I preferred it to Tasigna. She all but quit blogging a year ago and I found this forum but she has blogged about her bone pain. http://www.leukemiasurvivor.co/

[rnowinski]

rnowinski - Right off the bat, 58 is NOT too old for a transplant.  BUT, he shouldn't have even freaked you out about having one.  Most CML cases are treated with one of the four (or is it five, now?) TKI's successfully.

 

More info is needed:  Why did your onc think Gleevec was not working?  On what basis did he diagnose liver damage?  What were your initial numbers?  FISH?  PCR?  Is he following NCCN guidelines in your dosages and moving so quickly on to another TKI?

 

You most definitely need a CML specialist or at least a hematologist oncologist who has many CML patients on different TKI's and has followed them all for many years.

 

I am hoping Trey will come along here and help you. 

 

I'm real sorry about the leg pain.  I am on Sprycel and have never experienced the muscle or bone pain that others have reported on Gleevec and Sprycel.  My husband has sciatica, though, so I'm wondering if that could be the source of the pain?  That seems to be something that comes out of the blue and has nothing to do with injury or fitness, but seems to go along with aging.  I was 58 when I got CML and I definitely didn't feel old enough for CML OR sciatica or anything else bad, but that's life. 

Thanks for post. I was on Gleevec for a year and my numbers were not going down like my doc wanted. He does conference with Dr. M Bishop in Chicago who is one of the leading physicians in bone transplants. (works with CML). I was then switched to Tasigna but after 2 months, I had a liver biopsy done and it showed that the Tasigna was damaging my liver. I was then put on Sprycel. To be honest....I do not understand all of the numbers. I had a FISH test done before the Sprycel. I do not have those results in writing since they were done up in Chicago. My BCR/ABL is t(9;22)  (e13a2 and e14a2) result in p210. My scale on my BCR/ABL1 is 1.6152

 

I am not sure on the meaning of all of this.

[rnowinski]

rnowinski,

 

Welcome! You will learn here that response is what it is all about. Response to the TKI, response by our docs to our concerns, response to our fellow passengers on this CML bus when they post.

 

It would be helpful if you let us know what your PCR/FISH numbers were at diagnosis to current. Sometimes doctors who don't have any experience with CML are too quick to jump the gun and change medications and some are too slow. There are many people on here who have had issues with liver enzymes on Tasigna; many of those were temporary blips. If you have those ALT/AST numbers that would be helpful, too.

 

Because you are having such issues I agree that it would be a good thing to look for a physician who has had way more than 1 CML patient.

 

I've been on Sprycel since 2009 and the road has not always been smooth so it helps to have a compassionate doc to help with the navigation.

 

Good luck and I'm glad you posted.

 Thanks for the post. My last ALT/AST before the switch to Sprycel was AST=88 and A=224, however, I had a liver biopsy done which showed damage to the liver.

[chriskuo]

Have you had a recent FISH test? Was it positive or negative?

 

At your log reduction, it would be helpful to know if you have achieved and maintained a CCyR,

[Trey]

Lots of people have pain with TKI drugs.  It is sometimes muscle, sometimes bone, and sometimes joint.  The pain does not always need to be bilateral.  It should go away with time.  When you switch drugs you sort of start over with side effects and how long it takes to subside.

 

Your Onc talks about transplant because of some pains he does not understand?  I need to revive my world famous "Trey's List of the Stupidest Things I Ever Heard an Onc Say".  I would transplant him with a new one.  Who needs an Onc who cares more about his own feelings of how he wants things to go rather than about his patient's needs?  Only one who should be a "former Onc".

 

Your PCR is not great but is good enough.  I also think a FISH test might be more useful until you reach CCyR.  You are probably close.

[scuba]

I have been on Sprycel for 3 months now. I started at 50 mg and a month later moved to 100mg. About that time I developed leg pain at the top of my left leg. There are days that it is so bad, I can hardly walk. I do not recall injuring myself. It feels like a pulled muscle, yet when I rub my leg.... the muscle is not sore. I had an xray, and an MRI done last Friday and I am still waiting for the results from the MRI. My doctor is so frustrated with me. I think that I am the only CML patient he has ever had and he has moved me from Gleevec (wasn't working), Tasigna (damaged my liver) to Sprycel. He is doesn't feel that this leg pain is caused by Sprycel since it is only one leg that hurts. The doctor is saying that if it is Sprycel, he is going to put me on the transplant list, however, he says it doesn't look good for me since I am too old for a transplant (58 years old). He has made me really nervous. Is there anyone on Sprycel that has had this muscle pain???????

 

 

I had muscle pain (mostly at night) while on Sprycel - and my dose was only 20mg. I asked Dr. Cortes about Sprycel and muscle pain and he said it is likely a deficiency in magnesium that Sprycel can cause. He suggested I take 250 mg of Magnesium. He didn't say which kind, so I researched and decided on magnesium citrate. I took 250 mg at night. Within 24 hours, my leg pain (only one leg) was gone. I haven't had it since ... 

 

I now take Magnesium Taurate (better for the heart) 250 mg. spread in two doses of 125mg each, one in the evening just before it's time to call it a day and again in the morning when the sun comes up. 

 

Even though I no longer take Sprycel, I still take magnesium. It is great for sleep. Yes.... I sleep better now as well.

 

Consider taking Magnesium (250 mg.). You'll sleep like a baby with no leg pain.

[rnowinski]

Have you had a recent FISH test? Was it positive or negative?

 

At your log reduction, it would be helpful to know if you have achieved and maintained a CCyR,

What is a CCyR? Is that the number that should be in the negative?

[rnowinski]

I had muscle pain (mostly at night) while on Sprycel - and my dose was only 20mg. I asked Dr. Cortes about Sprycel and muscle pain and he said it is likely a deficiency in magnesium that Sprycel can cause. He suggested I take 250 mg of Magnesium. He didn't say which kind, so I researched and decided on magnesium citrate. I took 250 mg at night. Within 24 hours, my leg pain (only one leg) was gone. I haven't had it since ... 

 

I now take Magnesium Taurate (better for the heart) 250 mg. spread in two doses of 125mg each, one in the evening just before it's time to call it a day and again in the morning when the sun comes up. 

 

Even though I no longer take Sprycel, I still take magnesium. It is great for sleep. Yes.... I sleep better now as well.

 

Consider taking Magnesium (250 mg.). You'll sleep like a baby with no leg pain.

Is the magnesium taurate over the counter or is it prescribed? 

[rnowinski]

Lots of people have pain with TKI drugs.  It is sometimes muscle, sometimes bone, and sometimes joint.  The pain does not always need to be bilateral.  It should go away with time.  When you switch drugs you sort of start over with side effects and how long it takes to subside.

 

Your Onc talks about transplant because of some pains he does not understand?  I need to revive my world famous "Trey's List of the Stupidest Things I Ever Heard an Onc Say".  I would transplant him with a new one.  Who needs an Onc who cares more about his own feelings of how he wants things to go rather than about his patient's needs?  Only one who should be a "former Onc".

 

Your PCR is not great but is good enough.  I also think a FISH test might be more useful until you reach CCyR.  You are probably close.

BAHaHaHa...Thanks for the laugh today! I agree. My oncologist is not known for his bedside manner. I know that he is not really frustrated with me...just that I am not responding the way he thinks I should. But it does make me feel bad when he starts swearing!! (like it is my fault). My husband and I decided to take another trip to Chicago to see Dr. Bishop and maybe even a trip to Anderson Hospital. My sister's neighbor is the drug rep that sells Sprycel to that hospital and she called the doctor for me. He has agreed to speak with me or see me soon. I am tired of not being able to walk!!

[scuba]

Is the magnesium taurate over the counter or is it prescribed? 

 

Over the counter although I buy it online.

(Cardiovascular research)