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Anyone want to share experience on Sprycel? Will be starting it when it arrives


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#1 sharcare

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Posted 28 July 2012 - 01:01 AM

I was dx w/ CML on July 6th.  Went for 2nd opinion onthe 25th and I am now waiting for my Sprycel to arrive. What can I expect as far as side effects?  I know everyone is different, but I'd like to hear some experiences on it!

I am a very positive person and will play this hand as best I can, the rest is in Gods hands!

Thanks, Shar (pronounced Share)



#2 sharcare

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Posted 28 July 2012 - 01:02 AM

Oh and why do people call the meds TKI's?



#3 Marnie

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Posted 28 July 2012 - 05:48 PM

Hi, Shar. . .welcome to the club!

When some people start Sprycel they have pretty severe headaches, which last for a week or two.  I had to switch from Gleevec to Sprycel.  I took a 5-day drug break to clear my body of any residual Gleevec, and then started taking Sprycel at half dose (50 mg) for a week.  After a week, I took full dosage (100 mg).  My headaches were minimal for a week, maybe a bit more, and since then I've had very few side effects, other than fatigue, which seems to be a given with cml/tki's. 

As you begin taking Sprycel, your oncologist will want to monitor your blood counts.  Typically, people diagnosed have a pretty high WBC, then take Hydroxyurea to bring the counts down.  The TKI will also bring your counts down, so it's important to monitor your blood pretty regularly early in your diagnosis.

Despite the cml and the tki meds, I continue to have an extremely active life.  I am a full time middle-school teacher.  I kayak, snowboard, ride motorcycles, and generally am on the go 24/7.  Hopefully you will find that you have very few side effects with your meds.  Most people do pretty well with them, though not everyone. 

Be prepared for a couple weeks of headaches.  Check with your oncologist about over-the-counter pain meds.  Sprycel is hard on the liver, so you should NOT take tylenol.  My oncologist has assured me that advil or aleve is o.k. as long as it's not taken long term.  I try to stay away from it as much as possible. Drugs.com is a good resource to check for drug interactions. 

Good luck!

Marnie

P.S.  TKI stands for tyrosine kinase inhibitor (not sure I got the spelling correct).  You can google it, or check out Trey's Blog to get a description of how the medication works.



#4 sharcare

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Posted 28 July 2012 - 06:37 PM

Thanks Marnie for the heads up on the headaches!   I hope I can stay as active as you!  My thing is Zumba but I haven't been doing it lately due to the fatigue.  I too teach, but Pre-school, so it's been a relaxing summer.  4 more weeks before I have to go back to work.  I'm hoping I can get used to the Sprycel before going back to work. Thanks Again, Sharon



#5 OhRose

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Posted 28 July 2012 - 10:18 PM

Hi Shar,  There is a lot of info on this site and some really smart people, but as you say, we all have different experiences that are our own. I have been on Sprycel for 7 months, and I did not have any headaches. I did find in spite of the fatigue, I felt better if I stayed a bit active. I do not have a very good appetite. Joints aches were one thing I did notice and they seemed better if I kept busy. Did a few minutes on treadmill each day as tolerated. There are lots of little things which are normal everyday aches maybe more often, and a bit of restless sleep. You will find that you want to ask if everything that happens is due to CML when it really is just everyday living.  The most frustrating thing I notice is some non focus. I have to work at staying on task..use a lot of post-it notes. I rested when I needed to.

I  wanted to educate myself but not obsess on reading everything on the computer.  It was hard not to but so much wrong info out there. This is the best site for sure.

You will have regular bloodwork which will indicate how the drug is working for you. There is a lot of technical stuff you can read but for me, watching my bloodwork and feeling good is a great indicator. There is a great article by Dr Brian Drucker entitled "A triumph in the War on Cancer", that I found to be good reading for me as a newbie. Stay positive. As creepy as that leukemia/cancer name is, this is controllable. So much has been done for us.

Believe........



#6 cleocans

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Posted 29 July 2012 - 09:38 AM

Hello Shar.

I have been on 100mg of Sprycel for a year.  I did have the severe headaches when I first started taking it.  Mine lasted 4 to 5 days then were gone.  I had bone pain, which has pretty much gone away.  I get a few aches here and there.  I believe exercise has helped with that, at least for me.  I get fatigued if I don't get enough sleep the night before or don't exercise regularly.  The side effect that remains for me is water retention.  I take a diuretic on days when I've had too much sodium.  I still do everything I used to before diagnosis, sometimes I need a short break to rest up.  I have to girls 11 and 9 (10 next Thursday) that keep me very busy.  I plan to let them keep me busy for a very long time!!

Kim



#7 chriskuo

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Posted 29 July 2012 - 11:05 AM

Be sure to be aware of water retention issues so they can be dealt with before they get too severe.  I ended up with a significant pleural effusion that almost had to be drained.  I went off Sprycel for a few weeks and switched to Tasigna.

That plus alight diuretic cleared it up fairly quickly.



#8 BY196

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Posted 29 July 2012 - 06:00 PM

I started on Gleevec, then switched to Sprycel (100 mg) after thirteen months, so my experience may be different from that of someone who starts on Sprycel from the beginning. I am so glad I switched to Sprycel; it has been a much easier med for me to tolerate than Gleevec. I did have the bad headaches to which others have referred, though mine only lasted three or four days.  (I had a three-day washout period between Gleevec and Sprycel.) I have noticed slightly more fluid retention, mainly around my eyes and in my head generally, but it's not that noticeable unless you're really looking for it. I have not had as many muscle aches and cramps as I did with Gleevec, though I do have them occasionally. I agree with Kim that exercise seems to be helpful, although I hurt more now when I overdo it than I did pre-TKI. I am also much more affected by sleep deprivation than I was before. I used to be someone who could easily manage after a night with very little sleep (like 4 hours). Now, I feel really terrible if that happens.

Good luck! This board is incredibly helpful--we are lucky to have it.

Beth



#9 sharcare

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Posted 29 July 2012 - 09:02 PM

Thanks, I will let you know how I make out.  Still waiting for it to arrive.  I am very anxious about starting it.  I am 56 years old and not on any kind of med and never have been!!!!



#10 pammartin

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Posted 30 July 2012 - 06:56 AM

Hi Sharon,

I went straight to 100 mg. Sprycel, but my symptoms were very close to the others who posted on this board.  I had severe headaches, neuropathy in my hands, felt like my bones were hurting from the inside out, and was a bit sick to my stomach.  The first week was pretty brutal, but then by the second week it was much better, and heading to the third week I had none of the initial symptoms left.  What I have found is the seem to come and go, at no ones will but their own, but they never reach that degree of uncomfortableness I had those first two weeks.  I have been on Sprycel since Oct 2011, with a short break because of low counts, and today I have little or no symptoms.  Best of luck with your Sprycel beginnings and may they be as uneventful as possible for you.

Pam



#11 sharcare

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Posted 30 July 2012 - 09:51 AM

Still waiting for it to arrive!   Do you have to sign for it when it arrives?  Wondering if I have to be home or will they just leave it!



#12 mikefromillinois

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Posted 30 July 2012 - 10:14 AM

That stuff is about $8,000 a bottle.  You'll probably have to sign for it...



#13 Marnie

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Posted 30 July 2012 - 10:17 AM

HI, Sharon. . .typically, you are the one who decides if you want to sign for it or just have it dropped on the front step.  You will set that up with your mail-order pharmacy.  I always signed for it because if it is lost/misplaced/stolen, your insurance will typically not cover replacement.  I used to get mine through Curascripts, a mail-order specialty pharmacy.  During the school year, I would have it delivered to the office of my school and the secretary would sign for it.  During the summer/holidays, I would have it delivered to my home and I would sign for it.

If I were in your spot, I would check with the mail-order company regarding signature.  Depending on how comfortable you are paying for a replacement shipment out of your own pocket, you can decide if the risk of not signing is worth the hassle of signing.  It all depends upon your comfort level.

Good Luck! 

Marnie



#14 sharcare

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Posted 30 July 2012 - 10:21 AM

I will def. want to sign!!!!!!!   I put  a call out to dr. because he was setting everything up.  No one asked me about wanting to sign or not.



#15 chriskuo

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Posted 30 July 2012 - 01:46 PM

I would suggest you get involved with the specialty pharmacy yourself.   There is usually quite a bit of red tape to get things initally set up (obviously your insurance company will not

be anxious to shell out $8K a month without good reason).  Your doctor is probably not going to have the time to deal with all of this himself (the most important things is that his office

correctly fills out the forms required by the insurance company).  But if you are directly involved, you can push things forward more quickly.

I have used 3 different drugs at 3 different specialty pharmacies.  Each set up was a big hassle, but after the set up, everything went smoothly.  The pharmacy will call you well in advance of

each refill, because they are anxious to book your revenue as soon as possible.



#16 Lizzybee

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Posted 30 July 2012 - 02:32 PM

My Tasigna comes by Fed Ex and I don't have to sign for it.  I talk to my pharmacy every month and they've never asked about whether I want to sign.  But, we are not always home when it arrives, and we live in the back of a cul de sac without much traffic, so I am happy to not have to sign.






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