18 replies to this topic

[KristinaW]

My husband has cml and is about a year into treatment, he was taking gleevec and was just recently switched to sprycel. I was wondering if anyone can tell us what kind of side effects they experienced, and how you handled them? He has a pretty bad headache and nausea .

Thanks!

[VickiW]

Good morning Kristina!

So sorry to hear your hubby has joined our "club".  My history-dxd 3/07.  On Gleevec 2 very hard yrs. Switched to Sprycel spring of 09 reached PCRU spring of 2010.  My initial side effects from the Sprycel were pretty typical.  Bad headaches, nasty muscle/bone pain, some nausea.  In my case, the pain and headaches all disappeared completely within a couple weeks. I was given some strong pain pills, but chose to just take the tylenol instead.  Taking the Sprycel with food helped for me and just staying still for awhile.   After that, I have had side effects similar to what I had on Gleevec (except no diahrrea, yea)BUT the good news is that what seems to happen for most of us on Sprycel is that the side effects come and go, with each "cycle" usually getting milder.  For me it's been muscle cramps for a week or two then gone for a month or so, etc.  Pretty much the same with other ones too, including the "brain fog".  One thing I am dealing with that is different from the Gleevec is I have developed peripheral sensory and motor neuropathy.  I actually had very mild sensory Neuropathy on Gleevec and even before dx from the CML but didn't know what it was at the time.  It really hit me this past summer but let me stress that tho developing some form of peripheral neuropathy (mostly the hurting feet, tingling in hands and feet and the "pins and needles" thing)  does happen to some of us,  the sensory neuropathy becoming severe or the appearance of the motor neuropathy is definitely not a common thing.

Of course, our bodies are all different and we all deal with these drugs uniquely, over all, the trends definitely seem to show that Sprycel is much easier to live with than Gleevec.

My best wishes to you as his support system.  I sometimes think that is harder than being the patient, and of course to your hubby too.  Keep us posted.  We all care on here and really do know the path you are on.

Vicki

[KristinaW]

Thank you both so much! I am just a little worried about this switch. When he first started Gleevec, it was a relief, and he was doing really well on it for about a year. Then, all of the sudden it just made him soooo sick. Now i just feel nervous about everything. It is just like starting all over again. He seems to be happy about the switch, which is good! i am also a little confused about the neuropathy...

[VickiW]

Didn't mean to give you something else to be concerned about (the Peripheral Neuropathy).  If you are curious, there has been some discussion on this board about it so you can do a word search.   There are actully 3 forms and/or combinations of Peripheral Neuropathy.  Sensory Neuropathy which effects the "sense" nerves (aka skin) is one of the possible symptoms of the CML itself (which I had) and can also be a side effect of drugs used to fight it.  In most people, it causes tingling, pins and needles, etc. in the hands, or elsewhere and often painful feet and some loss of sensation (numbness).  Often it's more irritating and uncomfortable than anything else.  From my own (and I emphasize own) experience most professionals are not aware of this being a symptom of CML, but many types of cancer treatment can cause it.  It is also a common problem with people suffering from Diabetes.

In my case, and I stress again, I am the exception not the norm, the Neuropathy also involves the motor function (muscles) causing some nasty burning and muscle pain,  intermittant shakes,  loss of muscle control and weakness (mostly in my right arm). Any form of Neuropathy can go into remission, "come and go", hit a certain point and just stay there, continue to progress slowly, or suddenly get worse just like any other neurological disorder.  The catch twenty-two in my case is; 1-it is caused by the Leukemia and 2-it is caused by the drug(s) treating the Leukemia.  I am on a drug called Neurontin that is doing a good job controlling the most of the pain and I have actually had a reversal in some of the nerve damage (which can happen).  My big toes are no longer completely numb so I am not as clumbsy as I was and, at least for now, am able to leave my cane parked next to the door.

I hope I did a bit to clear up your confusion without giving you more to worry about.  Again, I stress we all are unique and our bodies react in their own ways to both the CML and the treatments we must do to control it.  If your hubby has not developed PN by now, the odds are very good he never will.

You have found a great resource for information for your hubby, and yourself.  There are great, knowledgeable people, like Trey and Chris, on here and lots of others, like me, who are'nt as technically knowledgeable but are glad to give support and whatever help we can.  I know personally, I don't know what I would have done had I not found all my "virtual friends" to help me in the beginning get started on my journey and now move on down this path.

your virtual friend,

Vicki

[jrsboo]

Hi there,

Just posted this in another discussion, but thought I should answer you directly too:

I don't get the headaches.  I get tons of other side effects.  But I take the Sprycel just before going to bed, around 11 pm.  That was based on reading what other people had said about it here on the boards.

Sprycel does not upset my stomach or give me the headaches, but I went straight on Sprycel at diagnosis, a couple of weeks before FDA approval of Sprycel for first line defense.  It seems the headaches are reserved for folks that were on Gleevec or Tasigna and switched.

Not to scare you, as I am ridiculously sensitive to drugs and have the devil of a time just using over the counter medication, I do experience tongue lesions, brain fog which as turned more into distractedness,  there was a lot of bone pain (which onc said was the drugs cleaning out my bone marrow), shortness of breath (not pleural effusion, had that tested six ways to sunday), loss of apetite, insomnia, a weird burning sensation in my feet when I try to go to sleep, hair loss, amazing fatigue in the beginning, but this is getting better, I just developed a body sized rash with what I would otherwise classify as prickly heat, but it is taken to the next level and I am on Prednisone this week.  The prednisone has the wonderful effect of giving me energy, but also makes me nuts.

Sigh.

But hey, no headaches!  And my CBC numbers dropped like a stone back to normal ranges in 2 weeks!

Best of luck, and please ask me anything else you want to know about Sprycel.  I have only been on it since September 30, 2010.

Caroline

[rickpister]

I am on 100 mg of Sprycel a day and thankfully have had zero side effects so far.  Diagnosed in September 2010.  Do these side effects develop over time?

[jrsboo]

Dear Rick,

You are totally lucky dude!  The side effects I felt were instantaneous.  I literally could feel the change in my body 20 minutes after taking the drug.  It was a low level buzzing.........and then the side effects started.  Fatigue and pain were the first two biggies.  Then there are others that are bothersome and keep me from having a normal day. 

But then, some report the same experience you are having.  I guess it just depends on how your body reacts.  I am totally jealous!

Caroline

[rickpister]

I am sorry to read you and others are going through the crap you've been going through.  As if the disease wasn't bad enough, now this.  I don't mean to pry or sound so simple minded but have you thought about changing your Rx (dosage or brand)?

I hope you feel better, Caroline.

Rick

[KristinaW]

Thanks again everyone for responding! It has really been a huge relief and after reading everyones stories, it has put my husbands mind at ease!

[jrsboo]

Thanks Rick,

The drug is doing what it is supposed to.  I am just extremely sensitive to drugs, I always get the odd rare side effects from everything, including Nyquil.

I am totally thrilled that you are having such an easy time with it though!  Thank heavens one of us is!!!

Caroline

[Teresabourgeois]

Caroline,

You are the first one that I've read that talks about the stinging feet.  I see that you posted this back in Jan and was wondering if you still have this issue.  I've had CML 5 months and on Sprycel.  Brain fog is a bad issue for me too.  But the stinging feet is really bad.  Rash to if I go in the heat.  Which is impossible not to do since I live in South Louisiana.  Not a swamp person though 

[jrsboo]

Dear Teresa,

Yes, I still have "hot" feet, but not as much.  Everything seems to calm down after the 6 month mark (a least a little bit for some things, more relief for others).  If my feet get hot, I have to go downstairs and stand on the cool stone tile in the foyer.  Or run cold water over them.

My skin is very unhappy with being on the drugs.  Just this past couple of days it has finally gotten sunny (for the first time really since I was dx in September--i live in the Pacific North-wet--pun intended) and I have been getting sun burned.  In Stripes.  Yup, stripes.  Craziest darn thing I have ever seen.  After the first day of stripes, I even put on sun screen 50 from the dermatologist and still I am now striped on my arms and neck.  And no, I didn't miss any of the areas with the sun screen (I can say this with authority because when I turned the bottle upside down on my arm, it plopped out a huge amount and I was literally covered in the stuff trying to get it to absorb in).

I have to be careful with what I have been calling prickly heat (one of the reasons I live way out here, it is cool and not humid!) my whole life, but now if I get it it turns into this massive fungal infection that I have to use prescription creams and gels on to control.

Fun times.

The brain fog has been horrible.  But I think as times goes on, your brain will find ways to adapt and overcome the hardest bits.  I notice that I speak slower now (just slightly) and it gives my brain a half second to find the word it was looking for.  I write down EVERYTHING that anyone tells me in a small notebook I now keep in my purse.  If you really are concerned, I would say have yourself tested for cognitive disruption, luckily my insurance paid for it, I think it was a couple thousand dollars.  But hearing from a professional that it was real was so helpful.  And I could point to a diagnosis to anyone that was trying to tell me that they too couldn't remember stuff, just getting older eh?  I personally think that this is very different, to go from one day fine, to poof! next day having huge amounts of trouble remembering what people said to me, rather than a slow decline from "aging".

I have lots and lots of other side effects.  Lucky me, so drug sensitive.  And I have the hardest time getting non-cancer center doctors to realize the gravity of the side effects.  They seem to take it as an affront that I know a lot about my medical condition and the drug I am on.  They have never even heard of them, much less understood the interactions.  So far, my dermatologist has prescribed a drug on the do not prescribe list, and my sports injury doc has poo pood the idea that the TKI's could possibly be the reason it is taking so long for the tendonitis in my shoulder and elbow to heal.  Despite me emailing him the research. 

Again, fun times.  It seems that taking care of this new body filled with drugs it almost a full time job.

Yours in kind,

Caroline

[Teresabourgeois]

Thanks Caroline for the info.  My brain fog comes and goes...at least that's what I remember (Ha)  My family usually tells me when I'm repeating something or had conversations with them that I do not remember. I too keep a note book.  I was wondering if you work?  I had to stop do the all of this.  I filed for SSDI and waiting to hear.

The heat rash is something that I've decided not to see a dermatologist about because he won't know what to do anyways.  Like you said, there are so many NO NO medicines.  I did have a derma tell me that until I stop the chemo that there's not point to treat.  So we both know our chemo never ends.  I do have a few good days every now and then and I get excited because I think it's over.  But then WHAM, it hits again and I'm reminded that it's never gonna be the same.  My hair looks like cotton candy and it's not even bleached.  My skin looks like red bumpy hives.....ugggh!  5 months ago my local Ono said, you will just take a pill a day with no side effects and be fine.  HUmmmm?  Really?

[jrsboo]

Dear Teresa,

Don't get discouraged, keep looking for drs that actually help.  There are creams and gels that will help with the rashes.  I have lots of them.  Find a new dermotologist.  And my hair fell out like crazy, for 6 months, filled a hair brush a day.  Luckily I had rediculously thick hair to start with.  But there is now a bald spot on the top in front, very attractive.  But it has at least stopped filling the hair brush.

I do continue to work, but not nearly so much as before.  I own my own law firm, so while I got rid of every single client that had court deadlines, I have continued to take estate planning clients (need to pay the mortgage).  And all of the clients have been very sweet about waiting longer for their documents.  But it kills me not to be able to offer the kind of quick turn around I am used to providing, and I get super overwhelmed all the time.  Bursting into tears is a weekly occurance.  I just lost my office due to inability to pay the rent, but luckily have tons of attorney friends that have offered me the use of their conference rooms, so I work out of the house for now.  The basement is a huge mess of boxes and ornate office furniture.  tons of boxes all over the living room, dining room, and foyer still trying to figure out where to put all my stuff in my tiny home office (about 6x5). 

Given the extremely high standard of care that an attorney is required to provide, it feels slightly harder for me to just slack off at all.  Not just clients are watching me, I have to be careful not to have anyone complain to the bar or my mal practice insurer. 

Double sigh.

And the doctor that told me I would just take a pill and move on?  My uncle, the hemotologist.  Apparently he had ONE patient on gleevec who did just that.  So therefore, I should do just that right? 

Ok, double sigh again.

Luckily I live near a research center and have an actual CML expert as my oncolgist.  I highly recommend this.

Hugs,

Caroline

[Teresabourgeois]

Caroline,

Sad to hear about your law practice.  I am glad that you can still do some of it to support yourself.  I am a Realtor but taking a leave at the present time.  The market is slower nsnot and I really don't need to be handling legal purchase agreements with this brain.  My brain wasn't great before CML but it's really pitaful now.  I think I am still going through the shock of having leukemia and hoping time will help me adjust.  I have energy for about 4 hrs a day.  Then the slug comes out in me.  My husband and I also owned a small electrical contracting business that we recently shut down.  CML and other reasons.  I am blessed that my husband has a "real" bad at a oil refinery.  It's great to have others to talk to about crazy things like stinging feet.  Doctors don't always get it.  I'm sure they think I'm making up side effects as I go. Ha!    Take care and I'll see what new and crazy pain I can come up with real soon.....(joke)

[jrsboo]

Dear Teresa,

Thanks, I am taking it one day at a time.  And you really have to be your own best advocate at the doctor's offices don't you?  Just keep poking away until they fix it!

Caroline

[super99]

Hi Caroline,

I'm new to the community (just barely 2 weeks diagnosed with CML). I posted "Recently diagnosed with CML" a few days ago but happened to find you from last year's post. 

I have a question about your brain frog.  Did you have it after taking meds?  How was your memory before you were diagnosed with CML.   I noticed my memory had gotten worse six months before I was diagnosed with CML.  I forget where I put stuff and what people tell me easily. I went back to work 2 months ago after staying at home with my children for six years. I noticed my memory isn't sharp either. I was worried about having Alzheimer's disease at early 40 but instead was diagnosed with CML.

[jrsboo]

The "brain fog" is called cognitive disruption.  I have been tested and it is due to the sprycel, but it is reversable.  If I skip a day, the next day I can think straight.  Mostly it is a disruption of short term auditory memory (I don't recall what people say), an inability to do complex higher thinking (it is hard to hold more than one thought in my head), and I don't seem to have memory for new faces.  Each time I meet the person, it is like I haven't ever seen them before, although they remember me!

You can be tested where they test people with brain injuries.  And there is some exercises you can do to help.  I never got back to find out what the therapy would have been, I just started to play games on the computer to try and train my brain to do puzzles again.

Sorry I don't have more information for you.

Caroline