28 replies to this topic

[dmball22]

Good evening everyone!

I was diagnosed on October 4, 2011 with CML and started Gleevec on October 7th. After a month of treatment, the nurse practioner told me that the side effects that I'm experiencing (Muscle and bone pain, muscle spasms, nausea, dizziness, numbness, chest pains, and headache, so far) will sub-side after 3 - 4 months. Has anyone experienced these side effects and have them go away after a while? If you have suggestions of things I can do to combat these side effects, I would greatly appreciate it!

Sincerely,

DeAnna

[Susan61]

Hi DeAnna:  I can only tell you what happened with me, as you will get different answers from others.  We do not all deal with the side effects the same.  Some say they never felt anything, and others will tell you it never ends.

I started on Gleevec in Oct. of 2000, therefore, I guess after 11 years of being on the same drug I can say for me it has gotten a lot better.  When you first start with all that muscle and joint pain, do not let it get you down because its the Gleevec killing off all those cancer cells.  I still get joint pain, but some of mine is from Arthritis.  I still get bad leg cramps and muscle spasms in my feet. That is the one complaint that I never seemed to overcome, and thats when I have to tell myself to stop and look at how long I am Living With CML.  I was diagnosed in 1998, but when nothing worked I went on the Gleevec through their clinical trial.  So this Dec will be 13 years since my diagnosis.  I hope this will help you a little bit.  Take time to adjust.  Your so new at all of this, but know you have a great bunch of people on here to always help you out.

[Pin]

Hi DeAnna,

I'm only up to my 5th month of Gleevec treatment, so I am sure others can answer this much better than me - but, I have found that some of the earlier effects have subsided (nausea has been solved by eating a larger amount of complex carbs before taking it, muscle and bone pain went away after about a month or so on its own) and some haven't gone at all (cramping is still an issue if I hold a muscle in place for too long!).

Anyway, I have heard that the side effects can subside from both people on this board and from my specialist, but most people on here will say that some side effects come and go, some just go, and some linger a bit longer, but decrease in severity. Hang in there, I do believe it gets better

Cheers,

Pin.

[Lynne D]

I was on Gleevec for 5 years and they never went away, they cycled with other side effects also. I switched to Tasigna and now Sprycel and unfortunately have side effects with all of them. On the positive side, I have yet to hear of anyone who has the same reactions to all these meds. I have met people who have had minimal effects, or some that have a handful. I guess what I am getting at is that no one is going to be able to tell you how long or if you will even get them that bad. I happen to be extremely sensitive to TKI's but we are playing around with my dosage to figure it all out. Good luck to you and hopefully you won't have any issues or none serious anyway.

[jjg]

Hi DeAnna,

Welcome to the boards! So yes the nurse was right, side effects do get better. It might not be exactly at 3 or 4 months, I actually went through a really rough patch then, but certainly most report big improvements some time in the first year. I'm at nine months (tmr) and none of the side effects have completely disappeared but they have all eased off and become cyclic so that I have many good days in a row. I like to think there is definitely light at the end of the tunnel but there is still the risk that it might be a train.

With the nausea ask for medication to help with that. Make sure that you are eating enough with your pills and eating something pretty solid. For the first couple of months I had mine at breakfast with boiled egg on toast but now just the smell of an egg turns my stomach. I think it is possible to associate certain foods with feeling bad so if you are always eating the same thing and feeling bad try a change.

I have found massage helps muscle problems. I used to get massages for running before CML and I still get them. I also massage my feet and calves myself (using some cheap vit E cream) as my feet love to cramp at night. I also had chest pain that freaked me out but turned out to come from very upset back muscles - massage/physio helped there - but obviously chest pain is something you should get checked out.

Numbness I never found anything to help - mine was only really bad for a couple of days but now comes back after I exercise.

You are in what is normally the worst period for side effects so be kind to yourself.

No doubt others will chime in with something useful

Good luck.

J

[Fas]

Hi DeAnna,

Sorry you have joined our exclusive club, but welcome.  I think when managing side effects that having a positive outlook and the expectation that things will get better is always helpful.  That said, as others have pointed out we each have our own experience with side effects.  For me, I have had all of what you described for periods of time over the 10 years I have been taking Gleevec.  The side effects wax and wane.  I also think that I have just gotten better at tolerating them over the years.  There are periods when I have a lot of muscle spasm and bone pain, fatigue is huge for me and lately I have had a lot of rash and skin issues.  I tend to manage most of these without additional medication, if I can.  Over the years the following has worked for me -

For nausea I keep ginger and peppermint tea and candies handy.  Licorice, the real stuff also helps me with nausea.

Exercise helps to counter the muscle pain and spasm, as do Epsom salts baths and massage.

I find using a neti pot helps me with the dizziness and sometimes "foggy feeling."  Maybe because it might be related to sinus irritation or edema also associated with Gleevec.  Not sure, just know it helps.

For headache I go to my grandmother's remedy and take a cold potato out of the fridge, slice it, place the slices on my forehead and tie them in place with a bandana.  She believed something medicinal in the potato drew out the pain.  I think that the cold numbs it.  Either way it gives me relief and better than a plain old ice bag.   So what if I look like Mrs. Potato head.

The above non drug therapies have helped me.  Hope there is something here that can help you too. 

Hang in there,

Fran

[GerryL]

Hi Pin,

I take a celery seed supplement (you can get them in Coles or Woolies), I only take one a day at the opposite end of the day to the Glivec, just to be sure. I've found it works most of the time for the muscle cramps. I only get them occasionally now - once every six months compared to a one or two a week. The celery seed doesn't appear to impact the Gleevec, judging by my last blood test and it doesn't impact the liver. Never did anything for the fluid retention unfortunately which is why I started taking them. LOL

[Pin]

Thanks Gerry, I think I will ask about this at my next appointment because whilst the cramps aren't too frequent, boy do I know about it when I get one! Usually it feels like a pulled muscle the next day, they are that sore. I guess the muscle hurts itself through spasming up? Interesting that it doesn't help with the fluid retention though - it sounds like that's mainly what it's meant to do!

[dmball22]

Hi Susan!

Thank you for taking the time to respond to my question. I appreciate your insight and encouragement. Take great care of yourself!

DeAnna

[dmball22]

Oh yeah....Susan, congratulations on being a 11 year SURVIVOR!

[dmball22]

Good Afternoon, Pin!

Complex carbs, huh? I will tell my chef (LOL Really my wonderful Mom, whose taking great care of me and my 15 year old)! I appreciate you sharing your story with me and the encouragement. I have definately stumbled upon a great place to hang out! Good luck to you... You are in my prayers!

DeAnna

[dmball22]

Good Afternoon!

Thank you so much for your advice and encouragement. Can I ask why you got off of Gleevec? So far, my docs say it's working. But the side effects are giving me a run for my money... Good luck to you and thank you so much for sharing your experience with me.

DeAnna

[dmball22]

Hi J!

Thank you so much for the suggestions! I've been looking everywhere for answers and I'm thankful that I happened upon this board. You all are so sweet and encouraging! It's nice to know that what I've been experiencing is not all in my head. I'm very hard on myself at times so thanks for the relief. I'm sure I'll find your suggestions, as well as others, helpful... At least now, I have different remedies that I can try. Thanks again and good luck to you!

DeAnna

[dmball22]

Good Afternoon Fran!

First, let me congratulate you on 10 years of SURVIVAL! These type of stories give me strength to keep pushin'! Your suggestions are greatly appreciated and I will be giving all of them a try! Thank you so much for sharing your story. I will keep you and everyone else who was kind enough to answer my question in my prayers. Take great care of yourself!

DeAnna

[dmball22]

Good afternoon EVERYONE!

Thank you so much for your kindness! It's nice to have some place to get answers from others who have been where I'm at. I feel like I'm whining when I mention to my family how I really feel because they are so used to me being strong and never showing signs of pain. I've suffered from severe migraines for 25 years of my life so I'm no stranger to pain. However, this is different! I'm so grateful that I happened upon this discussion board because all of your experiences support my feelings and have reassured me that it's not all in my head. I look forward to sharing with others who are new to our community as well as continuing to learn all that I can about managing CML and surviving for years to come! Thanks again to all of you and please know you are all in my thoughts and prayers!

Take "great" care of you!

DeAnna

[Pin]

Haha, thanks DeAnna I eat a piece of heavy rye toast and a bowl of bran cereal for breakfast - it gets boring sometimes, but it certainly helps with the nausea

[GerryL]

Part of the problem of when we do hurt a muscle or tendon, it seems to take longer to heal/recover due to the Gleevec.

[dmball22]

Hi Pin,

Does the bran seem to help with using the bathroom? Some days are easy and other days are hard as heck... just wondering if that seems to help.

[dmball22]

Cheers Billie! (glass clink!)

Thank you for the welcome, advice and encouragement! I will talk to my primary and let her know about all the advice I've been given. It helps so much to have this new family to talk to! I've even told my mom about the comfort that you've all given me. I look forward to many more educational conversations. Have a great evening all!

DeAnna