Hi everyone,
Located in New Jersey. (USA)
New to the forum, diagnosed with CML on Feb 12th,2018.
Age 71.
Had all the tests etc, including the bone aspiration/biopsy etc.
I will be taking 100MG. of Sprycel daily beginning this Monday ( 3/12/2018.)
Really concerned about initial side-effects: Anything to watch out for more than anything else?
Thanks for any info etc.
Chuck.
HI Chuck -
Headaches is the biggest initial complaint. You can minimize that by taking your first dose near bed time (sleep through it). and
drink extra water to stay well hydrated. Begin taking a magnesium supplement in addition to the Sprycel. It will help relax your blood vessels and minimize the initial headache.
It's a good idea to take extra magnesium anyway (magnesium citrate or taurate NOT oxide). 250-500 mg per day.
Regarding the headaches, are they as bad as a severe Migraine?
I used to get real bad migraines that knocked the heck out of me earlier in my life.
After initial vomiting/nausea had to sleep it off in a dark bedroom- no light and no noise PLEASE!
I would recover usually a day later looking like hell but able to get on with my life.
Migraine level?
Thanks again,
Chuck.
The headaches are not migraine like at all. It's very similar to when you drink Scotch and wine together. It's exactly like that.
I don't recall if it's wine first - then Scotch or the other way around. I do know NEVER to combine those two again. The headache was horrible.
Sprycel for the first time is just like that.
So drink plenty of water to get ready for your first tablet.
Also - if you are married - a little fun will help also - (get your blood flowing). Heck ... even if you're not married ...
Chuckster staying hydrated has really helped my husband. He has been on 100 mg Sprycel since diagnosis end of Sept 17. He def gets headaches if he doesn’t drink a lot of water ( at least a gallon daily ), even now. He also felt nauseous at first if he didn’t eat regularly, esp dinner and he avoids fatty foods and tries to stick to a pretty healthy diet. He takes his Sprycel at around 7, followed by dinner and sleeps fine. He also felt his heart beating very fast but thinks that was just him feeling panicky the first couple of nights hoping the Sprycel would work.
He was very tired the first month and still has days when he is more tired than normal but he just goes to bed early and slows down. But overall after month 2 when red cells returned close to normal he has felt so much better than pre diagnosis and has many days with great energy.
this is a fantastic resource here - I am glad you found it so quickly.
best wishes to you,
Louise
Welcome Chuck, you may want to keep in the back of your mind that Sprycel can often be effective at a lower dose than the recommended 100mg per day. There is some research that shows a starting dose of 50mg per day shows a good response rate for older versus younger CMLrs. If you do experience any severe effects, your doc may want you to take a break from therapy or they may suggest a reduced dose of Sprycel. When it comes to treatment for CML, one size does not fit all!
Hopefully, you'll find Sprycel to be a breeze and not have to worry about any of that!
Kirk
I started on Dasatinib in Nov 17, having been diagnosed in Oct 17. I haven't had any headaches (touch wood!) even though I used to suffer from migraines. I do get a weird feeling every now and then - feeling like I'm spaced out. This happens around once a week and lasts for a minute or so. I must say, I like Dasatinib. I do get bone pain but I drink loads of water, don't drink much wine and eat reasonably well. I take additional magnesium supplements on my cereal and am contemplating taking Tumeric. I walk for at least an hour a day and thus far things are working well. My 3 month PCR-abl showed a drop from 84% to 4.7%.
When I first got dastatinib, I read all the side effects on the leaflet and felt that this was the end! It reads like some sort of horror story, however once you start taking them you work through all the things that are happening to your body one at a time. Good luck!
hey Chuck and fellow New Jerseyian. I'm 3 months ahead of you being diagnosed in Nov 17 and started 100mg Sprycel in Dec. Side effects so far have been tolerable (tired but functional, slight hangover feeling, pale skin color). Been reading other posts and it looks like I will adjust my routine from taking sprycel mid-day to lights out, take curcumin and magnesium. Hopefully this will help side effects and improve the efficacy of the sprycel. Good luck!
Tom
Hi TOM!
(Fellow New Jerseyite!!)
Approx 9 days in on Sprycel and the only adverse side effects so far is I broke out with a rash on my scalp and the back of my neck.
Just came back from my Oncologist appt- she prescribed Hydro- cortisone cream at 2.5% twice daily.
On a level of 1 to 10, she said my rash is a one! Not that bad at all.
Also, she also is changing my time for Sprycel from around 12:30 PM to after 8 PM so any side effects I can sleep thru!
* Not adverse side effects, but I do get very lethargic and sleepy around 6/7 hours after taking the Med. which is so unlike me as I have
never felt the need to just sit in my lounger and fall asleep watching TV around 6PM every day.*
Having blood work done this Friday so these numbers will be since taking Sprycel .
Good luck to all!
Chuck
Hello Chuck and welcome I have been on Sprycel 100 MG for 16 months had the same rash on the scalp thought the hat I wearing was dirty went as far as running the hat thru the dishwasher which did not help the rash, took about 11 months and is pretty much gone. Only problem I am having now is the same sleep at 6 hours into pill and sometime just feel very cold. Other than that just adjusting to the new normal and waiting on a dose reduction.
Thanks for the info!
The hydro-cortisone creme is already working and after only 2 applications.
Not gone but definitely relief from itching etc.
* Took my first Sprycel after 9 PM last-night- went to bed after 11 PM- had to get up for " Bath-Room Calling" (LOL) 3 times during the night.
Had a slight head-ache at 7:30 AM- took 1 Excedrin- headache gone. No other side effects noticeable so far, except that tiredness feeling.
I think changing to night might be the better way to go!
Chuckster, I started treatment January a year ago. I am a 67 yo guy. About 6 weeks in, I had bad muscle pain that woke me up from my sleep. I had a great response and my Oncologist lowered me to 50 mg which solved most of the problems. I agree with other posters, 100 mg is too strong. As long as your response is good, you are better served to be at a lower dosage. I am currently as 40 mg. I firmly believe that after 30 days at 100 that you can and should have a dose reduction. The pills come in 70 and 80 mg strength as well but I am happy at taking two tiny 20 mg pills.
At first, there is the shock that you have cancer that would have killed you 25 years ago. Now I realize that something else will eventually kill me. I have to be muted in my feeling about being lucky in the Oncology waiting room as most of the others don't share our luck. Make sure that you are religious about taking your pills each day. I have a 9 PM reminder on my telephone that just says "Spry". It will take a while to not be freaked out about a cancer diagnosis - keep moving and enjoy your life.
One more thing, I was getting tired even before my diagnosis. If a little bit of fatigue is your worse side effect, it sure beats the alternative.
I am a 73 year old newbie ti CML myself, having just completed my first 13 days of Sprycel 100 mg. For the first seven or eight days I got some fairly severe headaches that pretty much put me down for the count, but after that and some good advice from the other folks on this site to stay hydrated and stick it out The headaches diminished to just being faintly in the background. Another side effect is being tired, lacking energy and feeling a little sad.
So hang in there, you can get through this but the first let’s say eight or nine days might be a Rough go for you.
what I am experiencing now is 10 lbs of weight gain even though I don’t have much of an appetite, and I think it’s water retention. My blood pressure is going up along with that and I’m starting to cough a little bit. So I wonder if any of you other ladies and gentlemen have experienced that and if your physicians have prescribed a diuretic and some potassium to help offset the fluid retention, And if so, did dumping the fluid with the diuretic cause an increase in the intensity of the headaches?
I hope this helps to encourage you as the others have encouraged me, and I hope all of you other group members can you advise me about the water weight gain.
I had terrible side effects on 100mg. Finally talked my dr in to lowering to 50mg and most of the side effects went away. Had bad headaches, leg cramps, terrible insomnia. The insomnia and vivid vivid dreams never got better until i lowered my dose to 50mg. The dr wouldn't lower my dose. I finally insisted and doing much better on 50.
Tom
