Ready for the roller-coaster ride for side effects !
Just finished 2- 500.ML bottles of spring water and will drink another 2 during the course of the day.
2 LR about right?
If your white blood count was high at your diagnosis like say over 100k.
the first month or so you will have a harder time then if your WBC was low.
The first thing that will happen is the lukemic white blood cells will start to die off
in mass and your body will need to get rid of these dead cells.
After your WBC are more normal then the long term side effects will set in.
Don’t assume that how you feel at first treatment will be the norm.
If your WBC were low like say 30K or so, it won’t be too bad.
Mine was 170k. The first two months were difficult for me.
It’s does get better.
My husband probably drinks closer to 4 litres daily ( I know , lots of loo stops) . He drinks it at room temperature otherwise he ends up freezing. He does generally feel much colder as well so be prepared to pile on the layers.
I don't think that you need to drink that much water. However, I was told that Omeprazole for indigestion can affect the potency. I take the Omeprazole in the AM with most of my meds and I take my Sprycel at night with just a sip of water. My PCR went from 77 in January 2017 to .015 IS three months ago. I was tested again this morning and will receive the results on Friday. I started at 100 mg but I am now at 20 mg. Good luck but stay relaxed - it is a miracle drug!
Omeprazole with dasatinib is not a good idea, even when taken far apart in the day. Dasatinib needs the acid in your stomach to break it down properly, the very thing which omeprazole neutralises over the whole day.
If possible, manage reflux with gaviscon / gastrocote or similar but don't taken them within 2 hours of each other.
I used to have terrible reflux, and here's my PCR results before and after getting rid of omeprazole.
Nowadays, I take my Sprycel in the AM typically between 5 AM to 7 AM. - I'm an early riser. I take 500 mg of Vitamin C with the Sprycel as Sprycel needs an acidic stomach to work at its best.. I have been able to slowly reduce my need for Omeprazole to an OTC pill of 20 mg only needed perhaps 3 times per month. I'm currently on 60 mg of Sprycel and my BCR ABL is .004
When I was taking Sprycel at night, I missed too many doses due to being tired and forgetting.
Your CML doctor absolutely needs to sign off on this before you take it. Acid reducers such as omeprazole will suppress the amount of dasatinib made available to your body. That might be acceptable if your PCR is sufficiently low, but that's a call for your CML doctor.
You can of course also try to manage your reflux through diet changes, weight loss (depending on your weight), and there are even surgical options available to fix the problem. I went down the surgical route to eliminate my reflux.
I take lansoprazole at 8 AM and dasatinib 100 mg at about 2 PM. I have discussed this with my consultant and she is unconcerned about taking these medications together. Pharmacists to whom I have spoken advise a separation of at least two hours.
I wake up early. I often take my Sprycel at 5 AM and I have an iPhone reminder to take it at 7 AM. I used to take it before bedtime but too often I fell asleep forgetting to take it.
Sprycel has a very short half life and has done its daily "poison killer" work in less than 4 hours as I understand it. If I take Omneprazole, I take it as early as possible, say 9 AM.
I have also tried to eat smarter and lose weight which is the hardest thing to be successful with. For me, too much bread sets off my indigestion. However, I can't completely give up bread.
My Oncologist has okayed my taking Sprycel but basically says that I need to take a little more due to Omneprazole.
I have been taking my synthroid at 6 am. Sprycel 50 mg at 7 am. Then I take omeprazole at 5 pm.Before dinner
I am trying to find better timing. My counts were. BCR of .0126. And MR of 3.9.
thank you for your response the more information I can get really helps me feel better and less anxious.
I too am a bread freek I cannot stop eating it.
When I was taking Sprycel at bedtime, I would occasionally fall asleep and miss a dosage of Sprycel. Missing a dosage of Synthroid is not nearly as large of an error as missing a dosage of Sprycel. I had my thyroid completely removed as I was "suspicious" of thyroid cancer and I take 200 mcg daily as I don't produce any naturally.
But I take my Sprycel and Synthroid together when I first wake up and then wait 20 to 30 minutes before I eat. I have not been told to take them at different times and I don't believe that they interact with one another. I would however wait 4 hours before taking Omeprazole as it reduces the benefits of Sprycel. Sprycel has a very short half live so I believe that 4 hours is enough of a separation. The stomach becomes used to Omeprazole. If you want to reduce your dependence on Omeprazole, you need to titrate your dosage down as opposed to stopping cold turkey.
When I was first diagnosed and about 10 days later I started taking Sprycel at 100 mg I was naturally nervous as hell. To hear that one has cancer understandably freaks one out but my Doctor said that if you are going to get a cancer, this is the one to get.
About 6 weeks out, I started getting some acute muscle pain in my upper legs. However, my cancer level plummeted and perhaps at my 6 month appointment, I got my Dr to reduce my dosage to 80 mg and later to 70. I am presently at 60 mg. I don't know anything about you but I am now 70 and my present PCR level is .011. I was diagnosed Dec 14, 2016 almost 6 years ago.The first few months might be tough but once you get the right dosage all will be well. From my viewpoint the medicine is so new that they really don't know what the correct dose should be
You will die - but not from this! and your life expectancy will not have any significant change! I think this is a private message - send me your email address and I am glad to write you directly.
Some believe that the starting dose of Sprycel should be 50 mg not 100 but you need to work with your Doctor.
Hang in there!
I have been taking sprycel for 11/2 years now and never had any side effects. I take 100 mg once a day. Before that. Was on gleevec for 6 months and I was nauseous all the time. Now my new doctor wants to change me to nalotinab. But after reading all the side effects and have to fast twice a day. That would be to stressful for me. So I’m going to talk to her and ask her to keep me on the sprycel. I hope the best for you and that sprycel is working out. Best of luck
My most current BCR-ABL was .011 on Sept 28, 2020. I am going to get my next test just after I get vaccinated as Covid is really crazy here in Los Angeles at present and we have a relative that is very sick at the moment. My tests have been bouncing around at a low level for quite a while. I will take a 20 mg Omeprazole as needed typically at least 4 hours after Sprycel or at night which would be perhaps 10 hours before. Even though it is contra indicated it has not made a big difference with me.
My last BCR was .005 before omeprazole so I am concerned. I am 73 and holding in there That was when I was taking synthroid in am with sorycel
maybe I should leave it at that and take omeprazole before dinner At least 10 hr after sprycel thoughts
i was trying to take omeprazole in am and sprycel at night but kept messing up timing
good luck on COVID vaccine Sorry you are havie a very sick relative My prayers are with you
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