14 replies to this topic

[melissaj35]

Hello, 

  Yesterday I went to see my doctor and I told him about how I sometimes fall asleep before taking my nightly dose of meds. I suppose to take 70mg twice a day of my spyrcel....morning and night.  Because my labs are not looking very good....he suggested that I take both my pills at once in the morning. My question is.... Are there any side effects from taking both pills at the same time? I know some people may be taking a one pill 140mg anyway which is the same. How does it effects you; stomach aches,pain,etc? 

Thanks in advance

[ChrisC]

Hi Melissa,

I always took my 100mg (2x 50mg) Sprycel pills in the evening before bed, so I never had any taking-pill-twice-a-day experiences to compare my ongoing fatigue & brain fog against. Never experienced stomach aches, though. We each react in our own unique way. Why not try it out, as your doctor suggests, and work with your doctor based on your experience of taking both your pills in the morning. It's always an ongoing learning experience for us, isn't it? What might have worked better or worse for awhile might provide an entirely different reaction six months later! Best of luck and success, and of course, great health to you!

ChrisC

[Trey]

The standard dosage for Sprycel is 100mg once per day.  Research has shown that 100mg is as effective as 140 daily, but with fewer side effects. 

http://www.businessw...inib-100-MG-Day

[hannibellemo]

Hi, Melissa,

Welcome! I'm not telling you anything you don't know when I tell you that taking your medicine as prescribed every single day is very important am I?   However, I do wonder why you are on such a high dose of Sprycel. Was there anything in your diagnosis that made you high risk? Accelerated or blast phase? Can you tell us what specifically your doctor saw in your labs that made him think your medicine wasn't working very well?

If not, it may very well be that taking just one 100mg pill per day may work much better for your life style.  For now, take a pill when you get up and another at dinner. It doesn't have to be right before bed. There is nothing really magical about 12 hours either - one or two hours either way isn't going to make a difference. However, skipping a pill or going lower than 100mg. until you really understand how this drug is working for you can be a problem. I would not recommend taking both tablets at the same time, simply because the side effects could really intensify. Actually studies show that splitting the two 70 mg. doses gets more medication into your blood stream for a longer period of time. That is one reason that pleural effusion is more prevalent at the higher dosage.

Do what your doctor says but don't be afraid to ask him/her why you are not taking the recommended dosage for a person diagnosed in chronic phase.

There are lots of very informed and supportive people on this site, we're very glad to have you here, too.

Pat

[Elizablest]

Hi Melissa,

I was told to take my Sprycel in the evening before bed, too. But, it was bad news for me because I have GERD and putting anything into my stomach after dinner just makes it worse.

Now, I've backed up to taking it with dinner, and this makes me remember to take it.

My dosage is 100 mg in that one pill a day. I don't understand why you are taking two pills a day equaling 140 mg. That seems like an awful lot.

I wonder if you have gone to the Sprycel website to read up on the dosage requirements. http://www.sprycel.com/hcp/safety.aspx

Perhaps you could print out the information about recommended dosages and show it to your doctor.

I've learned that I have to be straight out with my doctor. I realized that the relationship between he and I is like a marriage. We will be relating with one another for years. So why not be honest with him how I am feeling about things? I think we have to work together to maintain my health, and I really feel I have a right to have opinions and questions. Sometimes, too, we may disagree.

I hope you can get some peace of mind with your situation regarding taking your Sprycel, soon.

[pammartin]

Hi Melissa,

I have been taking 140 mg of Sprycel for almost three months now.  I take mine about 5 p.m.and  because Sprycel does not have the food limitations Gleevec does, I have done well with this time frame.  Most of my early side effects began about 4 hours after the dosage, so I was ready for bed anyway.  The only side effects I can tell you beside the original ones at 100 mg was a week of horrid headaches, joint pain, and some neuropathy, but they disappeared within about two weeks.  I was afraid the jump to 140 mg would be horrible, but it was not, I noted no different feelings than before.  Over the past month or so I have been loosing my hair and have a lovely red welt like rash on my cheeks, it shows up the worst about 4 hours after taking the pill and cycles well into the next day, but you are already on the dosage, it is just broken up in two increments, so I cannot see much difference in two pills at 70 mg, or one pill at 140 mg.  I questioned the amount of Sprycel, as Trey noted 100 mg seems to be adequate, so this weekend I will begin to take 100 mg again.  I am looking forward to the possibility of loss of hair and no more red cheek rash!  Whatever time you choose, I wish you the best of luck. 

Pam

[pammartin]

Perhaps I should have written I was looking forward to the possibility of 'not' loosing any more hair.

[tiouki]

Hello,

As some already said, only people in accelerated/blastic phase take 140mg per day. Standard dosage is 100mg.

Plus studies have showed that taking it once a day (versus half the dosage twice a day) is as effective and, importantly, cause less side effects (in particular pleural effusions).

So I recommend you to speak with your onc to take it once a day, and maybe reduce the dosage to 100mg if there is no risk factors with your CML.

About the time of the day to take it, I first took it in the morning but I had nausea starting 2 hours after the taking and lasting for 4-6 hours.

I now take it at dinner and don't have any side effect.

My doctor recommend to take it at dinner to limit side-effects, even though there is no restriction you can take it whenever you want.

Good luck

Pierre

[Elizablest]

Hi Pam,

I had the same first week's side effects. I thought if it was going to continue, I would be miserable. But soon things were better. I'm such a wimp!

I'd like to know more about how you have noticed hair loss, please. Are you finding more hair in your comb or brush? Finding it on your pillow?

I think I am seeing a thinning of my hair, but can't tell from my brush or pillow. I have long hair and it seems I've always had these signs. The only other thing I can put my suspicions on is when I look in the mirror and it just "seems like" seeing my scalp is more obvious. How long have you been taking Sprycel?

I also get bright red face. I haven't noticed if it is timed with when I take my pill, though. It just seems to come and go as it pleases.

I have a bumpy rash that appeared all over my body in those first days which has dissipated. Now only on arms, shoulders neck and face. It's not any more itchy than having winter dry skin, except for my face, which burns quite a bit. Sometimes it is so bad, I put ice packs on them as suggested by my dermatologist.

Thanks for mentioning all this. I felt like I was the only one having such reactions. My oncologist acted so surprised when I told him about these things.

Elizabeth

[Elizablest]

Hi Pierre,

Perhaps you could help me understand something that eludes me.

How does one know if one is in accelerated phase? Is it that blasts show up in the blood, or must it also be verified as being in the bone marrow?

Or can the white blood count be so high as to be considered accelerated even if the blasts aren't showing up yet, or are a small amount?

And if that is the case, then how high is too high with the white blood count?

Thanks,

Elizabeth

[pammartin]

Hi Elizabeth,

Oh yeah, I know all about the red face syndrome, and I am not always as mad as a hornet!  Mine seems to be centered between my eyebrows and on both cheeks close to my nose, it is quite unappealing when it flares, as you mentioned it comes and goes at will.  It does seem to be burning more than it used too, but since oncologist prescribed me the Metrogel it seems to be helping.  Hair..........oh the unfairness, at first I thought it was just a regular loss, we loose many hairs every day, but mine is coming out in huge amounts.  I do have lots of hair on my pillow, I see it on the floor in our bathroom it is white tile, mine is short and curly, easy to see it is mine, and yes, I am seeing quite a bit more scalp than I used too, especially on the left side, perhaps that is the side I sleep on the most?  If I run my fingers through my hair, they come away with fingerfuls of hair, much more than I have ever lost before.  I have been on Sprycel since October, with 3 week break due to labs, but beginning Saturday, I am going to try a lowered dose, hopefully the hair follicle will revive again.  I also have the bumps on my arms, they are blocked pores, usually dead skin is removed naturally, but for people like us, it just hangs around and blocks our pores.  I exfoliate daily, scrub the heck out of my skin and hope for the best.  I can't say I am happy with the side effects, but since I am doing well and responding, I try to hush and live with them.  On a side note, I asked the oncologist about products like Rogaine, they stimulate the hair follicle, the answer was a fast 'no', so there went that idea.  I am trying to convince myself thinning hair is less I have to fuss with, not sure if it is working.

Pam

[ChrisC]

Hi Melissa,

Perhaps Pierre (&/or Trey &/or others!) will answer you more specifically, however from Trey's info http://treyscml.blogspot.com/ for the newly diagnosed we read the following:

[How does one know if one is in accelerated phase?]

". . . The definition of CML blast phase has changed in the past few years. The World Health Organization (WHO) reclassified CML blast phase as 20% or higher, rather than the previous standard of 30%. So people are now being classified as blast phase when they formerly would have been only accelerated phase. That can be a source of confusion. . . ."

[Is it that blasts show up in the blood, or must it also be verified as being in the bone marrow?

". . . BMB is to monitor the overall health of the marrow for issues the PCR cannot monitor. BMBs look for other issues such as chromosome abnormalities, too few or too many cells (hypo- or hyper- cellular), bone cell status, blast count, presence of fibrous tissue, etc. . . ." From this we see that blast count is read only from BMB, not from peripheral blood.

[". . . can the white blood count be so high as to be considered accelerated even if the blasts aren't showing up yet, or are a small amount?"]

From my own case, I was diagnosed with WBC of 459K, normal platelets, and 4% blasts, so I was in Chronic Phase, from that it seems that WBC doesn't link to Accelerated Phase automatically.

How are you doing? You are working on a book about your life, right?

ChrisC

[Elizablest]

Hi Chris,

Thanks for the link to Trey's blog! and thanks for the information you have provided. It helps to get things into a better understanding for me.

Yes, I am working on publishing my life story. As a person struggling with chronic emotional problems all my life, plus bone cancer for eleven years as a young woman and now this... I have been told there are those who might wish to read how it is that I am still here.

Elizabeth

[Judy2]

Hi Elizabeth,

I started Sprycel 50mg 1½ weeks ago. After 4 days I started to get a rash with welts all over my face. I was on Prednisone, 2½ mg and 5 mg alternating every other day, for another condition. I increased the Prednisone to 5 mg a day and also supplement it with a 180 mg Allegra. So far this has been a huge help. Also, I noticed I was loosing hair this past fall. At that time I was on 2½ mg Prednisone every other day. When I increased the Prednisone to 2½ mg every day my hair stopped falling out. I should add my hair was falling out in the fall of 2010 but stopped falling out  in March 2011 when I started on Prednisone. So my hair loss was not due to the TKIs but to another condition. Anyway, I hope this may be of some help  to you.

Judy

[scuba]

Melissa, What do your most recent lab reports show? What is your PCR, FISH and blood counts?

Most importantly - how have they changed over time until now?