11 replies to this topic

[mlk210]

Hi everyone! Newly diagnosed and just started 100mg Dasatinib yesterday morning, so I've only taken 2 pills. Last night I had a splitting headache and my jaw was tight and sore, leaving me unable to get a great night sleep. I wondered if this is normal and if anyone else has experienced this, do the headaches wane after awhile? Has anyone else taken Advil for the pain, my onc had said okay, but still worried. 

 

I'm 38 female in chronic stage of cml. Still trying to grasp this diagnosis. I fear so much for my future and my kids, but I'm trying to take it in stride and hope the tki drugs help me. Because of this I tend to drive myself insane with what if's and search online incessantly. Any advice is greatly appreciated.

[Marnie]

Hi, mlk. . .the headaches will go away.  When I started Sprycel, I had heard about the horrific headaches, so I told my oncologist I wanted to start on half dose for a few days before going to full dose.  That seemed to help.  I had a mild headache for a week (or maybe two weeks, can't remember), and then they were gone.  That seems to be the case with most people.

 

I was pretty much side-effect free until last November, when I had a pretty bad pleural effusion (fluid build-up in the lining of the lung).  I recently had another.  I'm not telling you this to scare you, but just to let you know that it's really important to monitor your own body and speak up when something doesn't feel right. 

 

It seems like oftentimes, oncologists poo-poo the side effects, so people need to know their own bodies, and speak up insistently when something needs to be checked.

 

That said. . .I'm sure that your headaches won't last much longer.  You might have absolutely no other side effects, other than some fatigue.  But do watch for pleural effusion and PAH after a few years.  Those two things seem to be cropping up for some of us at about the 3-year mark.

 

Best of luck, and welcome to the club!

Marnie

[cleocans]

Hi mlk.  I was 38 when diagnosed to.  I to had the headaches.  Mine only lasted about 4 days. Others have lasted a week to two weeks.  But they do go away. 

 

I am just past the 3 year mark and the only real significant side effect I still get is water retention.  I still get occasional bone pain but usually only if I don't do some type of exercise.

[mdszj]

hi mlk210, hope things go well for you!!  I have had cml for a bit over 2 years and have been taking 100 mg Sprycel for almost this long (with the exception of a 49-day period when I had to stop taking it due to platelets plunging, and another 2-week period when I took 50 mg S when I went back on it).  Despite this setback I hit PCRU 15 months after DX.  Yeah I had headaches, which seem to have slowly decreased in intensity, and I still have one in the morning when I wake up.  At this point it feels a bit like a not-too-bad hangover.  But I have found that eating breakfast and drinking a good amount of fluids (large glass of orange or pineapple juice) plus a big cup of tea after a while pretty much makes it go away.  So it is no big deal for me anymore.  If I had one piece of advice it would be: exercise or play a sport as much as possible. I am convinced that consistent (almost daily) exercise helped me reach PCRU, but you will never hear any doctors admit this.

 

Hope this helps, Mike

[mlk210]

Thank you all for your replies! Did any of you take Advil or aleve for the pain? Will more side effects come and go as I continue taking dasatinib?

[Thawk]

I'm about 18 months now on Sprycel. All the responses above are pretty representative of what I have gone through. One side effect not mentioned is I have some skin rashes. Fortunately it does not itch but does take a while to heal, nothing anybody notices. Using a steroid to control. Only other side effect that bothers me is lack of energy. Advil and Aleve are NSAIDS and I have been asked to avoid NSAIDs. For the headaches I get, I find Excedrine works fine.

I think we all need to anticipate side effects to pop up, especially the longer we are on Sprycel. However, the Benifits Sprycel provides are well worth the small discomforts. Just make sure you take the Sprycel as directed.

[Marnie]

I take Aleve occassionally.  Right now I'm dealing with a ruptured disc, so have been doing Aleve twice a day.  My doc also says that Advil is o.k.

[pammartin]

I started Sprycel in Oct 2011 and the headaches were rough. One member described them as someone pounding railroad spikes in their head, then after several days they lessened to paneling nails. For me, this description was sadly accurate. After about two weeks they disappeared. Before I stopped the Sprycel in May, I would have occasional headaches, rashes on my neck/chest/face and flushing that could be annoying. These symptoms were random and arrived without warning or schedule I could correlate to taking the drug. I would go quite a while without them then have a period of time they were fairly constant. The only thing consistent I have found about Sprycel side effects is their inconsistency. Best of luck!

[mlk210]

Thank you everyone for your responses. I got through the week of horrific headaches and I think today (9 days) is the first day it hasn't hurt a bit. Of course, I don't feel many other side effects now, which worries me that the drug isn't working! Reading all your posts keep me optimistic that in time, CML won't consume my mind so much. This discussion group is very helpful to me, thank you all for your contribution.

[JPD]

The pills are working.  And most likely they WILL work well enough for a very long time. 

 

Besides a little hair loss on my legs (Ive been balding since I was 19 so my head is a long time shaved) and some dry skin issues, I now have no side effects from my Tasigna 300mg (reminds me I need to take my pills... the bitch of the Tasigna is not being able to eat two hours prior or one hour after eating).  It will get better (the side effects) and if they dont, there are other meds.

 

Take the pills, live your life

[SUE]

Hi mlk,

 

I've been on Sprycel since January(Gleevec before that, but I switched because of a very bad Gleevec rash).  I started at 50mg, then 2 months ago went up to 70mg.   It's been pretty good, though about 3 weeks ago I developed a bad rash on my face..  I had also just started a blood pressure med, and also an antibiotic ointment for growths on my eyelid.  The doctors think the rash was caused by the bp med or the ointment.  I really feel that the Sprycel was at least a contributing factor.  I stayed off Sprycel for 6 days(with onc's ok), and then switched back to 50 mg.  So far it's been ok.

 

Side effects can come and go, or sometimes come and stay for a while.  As others have said, the best thing to do is be aware of changes to your body, and talk to your onc if you are concerned.  Some of them still deny that "their" med can cause a problem, but many of them are coming around to a better awareness of possible side effects.

 

Good luck.

Sue

 

P.S.  I don't think it's true that lack of side effects means the medicine is not working.

[V312Torino]

I was somewhat older than you when I was diagnosed with CML in 2002.  I started on Gleevec 400mg and stayed on it for about nine years.  I was in the chronic phase with a white blood count of 100,000 when diagnosed.  What happened during the nine years was I went into complete molecular remission, based on quantitative PCR testing.  Lost remission a couple of times....one time was when I started taking Plavix.  I believe there can be a drug interaction there.  After about nine years I went out of remission and my kidney function was getting worse.  The believe the Gleevec caused the kidney damage and put me in stage 4 (there are 5 stages) renal disease or failure.  I was put on Sprycel.  After just a few days on 100mg of sprycel I was put in the hospital with heart issues...I was in afib.  Anyway, they cut the dose to 50 mg and the heart rhythm issues did not return.  After several months on Sprycel 50mg I had to have fluid drained from around both lungs.  The drained 1.2 liters from around the left lung and 1 liter from around the right lung about a month and a half later.  I was referred to Mayo Clinic and the plan I was put on was to cut the Sprycel to 25mg a day.  That is 1/4 the "normal" dose.  I have been on 25mg for a couple years now and I have been in complete molecular remission.....that is the CML is undetectable with the quantitative PCR test.  They check it every few months and it comes back the same time after time.  Last month I developed cellulitis (skin infection) in my lower right leg and the infection, along with my compromised renal function, put me in acute renal failure which earned me four days in the hospital on IV antibiotics.  It looks like the infection may have permanently damaged the kidneys even further.  I had about 25% GFR (kidney function) before the infection and I am at 18% now.  Dialysis starts at about 15%, depending on the individual situation.  Anyway, my point is it will have been 12 years since my diagnosis in November.  Do not give up, there are several treatment options out there.  Does it suck to have CML, especially at your age?  Sure it does, but a lot of things suck......it could be a lot worse.  Also, keep watch of things like kidney function.  When I first went on Gleevec it was not known it can be toxic to the kidneys, liver and heart (I think that is right).  I wish I had gone to Sprycel earlier but that ship has sailed so there is nothing to gain by stewing over it.  Do what you can, what you want and admit it if you need help doing something.  I had and have a lot of fatigue.  I was diagnosed at age 54, took short term disability, went back to work and after several months determined I could not do the job any longer because of fatigue.  Even taking every short cut and advantage of having done the job for many years....I just could not do what the job demanded of me.  I asked about a different job but was told there was nothing I could move in to that would be easier, so I went out on long term disability.  Social Security approved me very quickly.  Right now the kidney issues are causing me more direct problems than the CML....feet and legs swelling a lot unless I lay down most of the time.  I may be better off on dialysis.  But like I said, do what you can.  Push yourself but don't over do it so it takes three days to recover.  Push yourself just short of the over doing it point.....the  rest.  I mow the grass but I got a mower that is much easier to use.  I drag race as a hobby but one of my sons, who also drag races, loads and unloads the car from the trailer.  We went to Disneyworld last year but another one of my son's drove and I laid in the back seat most of the trip;;;;;and I rented an electric scooter while I was there.  Do not give up hope and do not stop doing things.   Just do them differently, do them your way.  Do all you can but conserve energy every chance you get.   I know I have rambled on and did not even mention the headaches.  The only headaches I remember was when I was in the hospital after I had been on Sprycel 100mg for a few days and had the heart rhythm problems.  I had migrain type headaches where I would put the blanket over my head, try to block out all light and all sounds and wait on the next dose of morphine.  They lasted about three days and I never had them with the lower dose.  Hang in there.  You are in for a fight, but it is one you can win.