12 replies to this topic

[alexamay09]

hi everyone. I took my first sprycel 12 hours ago. All ok until headache and some leg muscle pain about 8 hours later. But since eating earlier this evening I am having severe pain. I think its GERD, and though I have had short lived symptoms a few times before I have never had this much pain with it.  has anyone had similar and did it resolve? thanks.

Alex

[Johnc]

Hi Alex

I did not have pain and  indigestion but  got very ill and could not hold food down the first day. I had a headache the first week in the morning as i took the Sprycel at 9 in the evening and then they went away never to return

Be patient, hang in there and  good luck

Johnc

[CallMeLucky]

I've been going back and forth with Sprycel since I started about 2 mo ago switching from Gleevec.  I was on 100mg and just restarted on 50mg.  Within a few days the chest pain has returned, left side around heart it is sharp and nerve racking to say the least.  It is looking like I cannot tolerate Sprycel which really sucks because I otherwise feel really good on it.  I bent over to pick something up and it felt like someone stuck a knife in my chest.  Not sure what the issue is but I can't do this long term I have to believe this kind of discomfort is causing damage.  Hopefully for next week or so it will be ok I need to try to stay on since I have been on and off.  For a while I thought it was GERD because ei had a lot of belching but that has subsided now just sharp pain in chest and it gets worse with any exertion.

Sprycel is a powerful drug and it looks like it does not agree with me.  Will likely go Tasigna, although bosutinib is an option but given short time on market I'm a bit weary.

[alexamay09]

thanks guys. Lucky, I was reading about your problem, it sounds horrible. i can sympathise. its really worrying as well when you think you might have to change meds. I was on tasigna since diagnosis -over 4 months, and the worst side effects were fatigue and rash. i was starting to feel much better lately and the rash finally settled a couple of weeks ago witu regular anti histimane. Dont worry if you have to change to Tasigna. its really fine once you settle into it. I am hoping Sprycel will settle too because I cant cope with that terrible pain. Ended up taking antacid then read that I shouldnt have!

Alex

x

[Susan61]

Hi:  Sorry your having so much discomfort on your first day of Sprycel.  I can only tell you that I had horrible Heartburn like never before when I started on the Gleevec.  It was GERD, and I had to go on Nexium.  It totally stopped the problem for me.  I still take Nexium 40 mg. a day. Check with your doctor.  For me personally I cannot take anything else like a over the counter antacid.  If it is GERD, take care of it right away.  Hope it gets better for you each day.

Susan

[alexamay09]

thanks Susan, day 2 and it's been great, no headache or indigestion. Fingers crossed !  i bought some over the counter remedies just in case, as I see a number of drugs such as proton pump inhibitors are not allowed with sprycel.

alex

xx

[CallMeLucky]

It's really not horrible just frustrating and at times nerve racking.  I had a decent day today without too much discomfort although at the moment I have a stinging feeling in my chest.  I will continue to ride it out.

[acb]

Lucky,

I have had the same symptoms, pretty much exactly as you have described them in your other posts. Some times they are more severe than others and sometimes with burping like you originally had and sometimes not. I was on 100 mg from July 2010 until July 2012 and have been on 70 mg since July 2012. (I have been PCRU since Oct 2010 but can't talk my oncologist into any lower than 70 mg). I have not noticed much of a change in side effects in the drop to 70 mg.

Have you tried taking your pill at a different time? Have you tried changing your eating/drinking habits to see if that helps? I have noticed that certain foods and drinks seem to trigger it more for me, which makes me think it is more GERD or indigestion related. (For example, I like Diet Mountain Dew but it seems to be one thing that can cause these issues for me. My NP said it is the citric acid in it. Also, certain Mexican foods, etc. especially with grilled onions, exacerbates it as well.)  I also try to take my pill at least an hour or two before bedtime. I noticed it was worse when I took it very close to bedtime.

Since July 2010, I have had several EKGs (I have a short P-R interval) and 2 ECGs, and my cardiologist says everything is fine from that standpoint. I go back and forth with the idea of switching drugs, lowering dose again, etc.

I hope things improve for you soon. Please keep us posted on what you do -- I am not sure what to do at this point.

[OhRose]

Hi Alex, I am also on 70mg sprycel. I had GERD issues before dx. I take my sprycel about 8pm. I try not to eat heavily after about 5pm, just kind of graze mostly. I also eat a few crackers or something "dry" when I take my pill. If I feel things mounting in the pressure in tummy and chest, I usually go to bed (stretch out) and read. It usually happens maybe 2 hrs after pill, if it is going to happen at all, and I do not have it every day. I also will take a zantac if it is at least 3-4 hrs after my sprycel. My issue is usually at night and I take the pill then so that I sleep thru most of the initial side effects. Nexium is a longer acting med and I quit taking that at dx. I do feel there are certain foods which my sprycel does not work with but have not worked at compiling a good list so that is why I do not eat heavily after 5.

I hope you find your solution from all of our experiences.

Rose

[CallMeLucky]

This is a good conversation.  I can't help but think it is heart related given where the pain is and how it feels, but like you all test show no problem and in some ways it doesn't feel like heart if that makes sense.  I noticed the other night it wa brought on after a richly salty meal.  Got me thinking it could be GERD and fluid retention based.  Original urgent care Dr said he thought it was GI related but onc blew that off.  I think there may be more to it.   I always take pill when I go to bed, I will try taking at different time.  Today I had pain in left arm pit again.  Sometimes I wonder if there is a lymph node reaction going n since it follows a chain of lymph nodes along sternum then along clavicle and into arm pit.  None of the nodes are swollen but they are tender all along the chain.  The thing that keeps bringing me back to cardiac is why only left side?  If this was right side I would be no where near as bothered by it.  Had a cough come on tonight, that had settled down for a bit.  Hopefully it will go away again.  Not sure what I am going to do at this point.  New onc is flexible but said he is not looking to leave me on 50mg, said only temporary.  The things is I'm not comfortable staying at 50 given the way I feel. I could tolerate it if I knew I wasn't doing any damage to heart but no way to know that so even if I stick it out not willing to go any higher.  That might be a deal breaker depending on his stance, not to mention test results.  Might have to try something else.  The question is Tasigna or bosutinib.  Bosutinib seems like it has a good side effect profile that might be good for someone who has responded well but very sensitive to side effects.  But with such limited use it makes me nervous (let's face it they all make me nervous). Ultimately it will be Drs decision.  In mean time I am keeping food journal to try and track what makes it worse. 

Good luck if I come up with anything I will let you all know, please do same.....

[TeddyB]

Try taking it in the morning or around lunchtime. Maybe taking the pill and then laying down is making the issues worse. Worth a try

[alexamay09]

Thanks again guys. lucky, the symptoms are frightening. if you have tested ok, then it may well be GI related.  I don't think that  people realise how painful these symptoms can be.  we are told that indigestion is a minor thing! I was pacing the floor and every time I burped it created another wave of pain. I am now day 4 of 140mg and  have been taking tablet in the morning

i haven't had any real bother since day 1, so am thinking my body was saying 'hello, this is new'!

perhaps try taking your tablet on rising?

Alex

x

[acb]

Alex,

Just curious ... why do they have you on 140 mg? Standard dose is 100 mg (it used to be 140 mg) and some oncologists now start patients on 70 mg. Sprycel is a strong drug. Are they monitoring you with very regular CBCs? With that dosage, your counts (WBC, platelets, etc.) can plummet rather quickly.