20 replies to this topic

[hannibellemo]

Could I possibly be unlucky enough to start Sprycel on the day I am incubating a stomach virus?  I've never taken Sprycel before but I have definitely had the 'stomach flu' and this feels a whole lot like the latter.

Took Sprycel yesterday with an early dinner around 5:30 p.m. Went to bed with a heating pad around 10:00, just couldn't get warm. Around 11:30 woke up and I was trembling uncontrollably - that freaked me out! Started vomiting around midnight was surprised to find that I still had plenty of food in my stomach 6 1/2 hours after dinner. I woke up around 3:00 a.m. with a 'top of my head' headache and achiness. Probably running a slight fever, I feel warm, but I can't bring myself to get out of bed to go get a thermometer. I'll wait till Steve wakes up and have him get it. Just had labs yesterday and my neutrophils and WBCs are mid-range so I'm not really concerned I can't fight this off, but I will still let my doc know if I am febrile.

If this is Sprycel I am way dismayed with the early side effects! Frightened, even! Can I do this?

Pat

[PhilB]

Hang in there Pat.  I'm sure Trey or one of our Sprycel people will be along soon with detailed answers to your queries, but the one thing that seems to have happened to almost everyone on the drug is a very rough first few days followed by a huge improvement until most of them are way better off than they were on G.

Best wishes

Phil

[hannibellemo]

Thanks, Phil, for the encouragment! I feel better this morning considering I've had only about 3 hours sleep. Still have a slight headache (that I understand is normal for early Sprycel).

It was suggested to me on http://www.newcmldrug.com/ that the vomiting, chills and fever were not normal for early Sprycel.  First time I've ever hoped I had the "stomach flu"  LOL!

Pat

[vermontmike]

Hello there Pat, Yes you can do this. I have been on Sprycel since August 5. I took first my dose around 8:00 pm. I also woke around 3 in the morning with the headache and chills.That night was really bad. The next day I pretty much stayed in bed trying to rest.Gradually things got a little better. The headaches slowly subsided, my energy level increased. The first couple of weeks were definitely rough and a bit of a blur. (I am not sure where the month of August went.) I had to rest quite a bit, more so than on Gleevec. Now I am feeling relatively "normal", as normal as a person with CML can feel ! I have some minor side effects, but nothing that I can not deal with. I have small raised bumps on my upper arms, my Doc looked at them and did not seem to concerned. I also am on my feet most of the day, at the end of my work day my feet and knees are tired. This just be normal 50 year old carpenter stuff !

My reason for the switch to Sprycel was my PCR went from 0.2% in April, to 1.2% in July. I just got my first PCR results this week, 0.5%. My Doc was happy and so am I. Sprycel appears to be doing its job. Next PCR is end of November.

From what I have read here on these pages, everyone seems to have some issues at the start of Sprycel. Some get used to it sooner than others.Hopefully you will be one that adjusts quickly. Hang in there Pat, listen to what your body tells you, rest when you need to. If you have any other questions fell free to e-mail me.

       Best of luck- Mike

       100 mg Sprycel since August 5

[hannibellemo]

Thanks, so much, you all; it's so nice knowing that none of us have to go through any of this 'shart' alone!

I don't feel too bad, just a little shaky, headache is much better.

Have decided to take my dose earlier today - with lunch. If it is the Sprycel I want to get that over with so I can get some sleep tonight!

Last night between the period of time when I was afraid I was dying and the period where I was afraid I wasn't going to die (don't scoff, if you've ever had a nasty virus you know exactly what I am talking about) I surfed the web and found the website maintained by Jerry Mayfield that http://www.newcmldrug.comI refer to in post above.

I'm certainly not trying to draw a correlation between my experience and Don Adkins, but this poem made me feel a whole lot better. I hope it is ok that I post it here.

Tribute to a CML Warrior...
by Jerry Mayfield

Today is the "Re-Birthday" of my dear friend, Don Adkins. He had a transplant at M. D, Anderson 5 years ago today. I remember, well, the day we met. He rushed up to me and gave me a great big hug. We immediately connected and became close friends.

Out of respect for his privacy, I will not go into the details of his transplant but suffice to say it has been very difficult. He has been "To Hell and Back". He has faced the"CML Dragon" bravely and without complaint. He is the bravest of the brave. He has defeated the Dragon.

I read this poem many years ago and adopted it as my inspiration for the fight ahead. Every time I read it, I think of Don. He truly embodies these words. I dedicate it to him.

Wounded, But Not Slain

"I'm wounded now, but I'm not slain,
I'm bruised and faint they say,
Just let me lie and bleed a while,
I'll not be long this way.
My spirit's low and my eyes flow,
My heart is sad and sore,
But when my pen'ent tears are gone,
I'll stand and fight some more.
I'll bind these wounds, I'll dry these tears,
I'll close this bleeding vein,
I'll not lie here and weep and die,
I'll rise and fight again.
'Twas yesterday I bowed so low,
Was weak from tears and pain,
Today I'm strong, my fears are gone,
Today I fight again."

-- Author Unknown

Well done, my friend,
Jerry

[Trey]

Pat,

Whichever it was -- flu or Sprycel -- it will be better very soon.  You will adjust quickly.

[hannibellemo]

Thanks, Trey. As much as I hope it was stomach flu I have a suspicion it wasn't, especially after reading VermontMike's experience. I've reread everything I can find on this discussion board about those of us who have switched to dasatinib (am I the only one who has trouble spelling Sprycel?) and if everyone else can do it...I can, too.

Pat

[janekaye]

Hi Pat,

It was really strange when I read your post a couple of days ago - sorry I didn't reply sooner.  I had pretty much the exact same reaction my first day or two on Sprycel.  In fact, like you, I said to my husband, "This can't be the drug - it must be a stomach virus of some kind."  In retrospect, I think it was the drug.  I did not feel well for about 4-5 days, and then (as Chris noted) suddenly on about day 6, I was thinking "wow, I feel more normal than I've felt in ages."  It was great.

I've been on Sprycel for about 5 months now, and just started an increase dose (140mg split between two daily pills) several days ago, and so far, so good.  I have a headache today, but I can deal with those minor inconveniences, as I'm sure we all do most days.

Keep us posted on your early transition - I wish you well.

-janekaye

[hannibellemo]

Hi, janekaye,

I had pretty much decided that it wasn't a stomach virus, too. Thanks for letting me know about your experience. I didn't repeat day 1, fortunately, felt pretty good the last two days just a headache that got better as the day went on and slightly itchy palms and soles of feet. Today I get to obsess about my red, wind-burned feeling face and small localized rash near an underarm area. Sounds like rashes are faily common on Sprycel, too.

Not having many side effects on Gleevec, I've discovered I'm not good with them, everything is anxiety producing and everything gets far more attention paid to it than it probably should - at least the side effects I'm experiencing. LOL

Well, almost time for my next dose...wonder what this will bring?

Pat

[td1961]

Pat,

Sorry you had such a hard time with your initial dose! I took my first 50 mg dose on Saturday afternoon per the "plan" with no noticeable side effects! I was rather surprised and delighted indeed! Sunday, I took one 50 mg dose in the morning with breakfast and a second 50 mg for a total of 100 mg in the afternoon with lunch. Again, no noticeable side effects like with gleevec. It was a relief not to have the stomach upset kick in right away as per usual with gleevec. However, not so fast!!! I woke up early Monday morning (1 AM) with what I'd like to refer to as flu-like symptoms, i.e., stomach upset, loose stools, gas, cramping, slight temp, chills, nausea, BUT NO vomiting, thank god! So, maybe what you had is a normal "introduction" to sprycel? I stayed home yesterday and the symptoms seem to be gone by about noon. Last night I had more upset stomach and gas to deal with but nothing on the order of what I've dealt with on Gleevec. Other than loosing some sleep,  so far, so good.

Regards,

Tracy

[hannibellemo]

Tracy,

After janekay's post and yours I really think it was the dasatinib and not a 'bug'. I've had no repeat of that, thank goodness, if there is one thing I hate it's vomiting! I actually feel better though after hearing from you two about it - not that I'm glad we went through it but that it does appear to be a 'normal' for dasatinib.

I've felt pretty good with the exception of a slight headache and an irritating erythema on my face and neck - feels like windburn. When I look at myself in the mirror I feel like my face should be flaming red but really my cheeks are a little red but that is it, my face does feel irritated though.

I'm a little anxious - the elevated liver enzymes on Gleevec hit me out of left field - I was doing so well on it and it was working for me. I just really want to be able to continue on dasatinib!

Taking one day at a time...

Pat

[td1961]

Pat,

I'm sure you'll be fine! Try not to worry so much! You'll drive yourself silly! You can only control what you can control and that isn't much! The redness (burning) is sort of weird. Haven't had that yet. I noticed that I had some rash, dry skin or something on my foot which I can't explain. Other than that, the stomach upset or rather, the extra acid or heart burn is still around like as with gleevec. However, not as bad! Acid neutralizers aren't as effective as acid reducers for me so I'm not sure if this is something that will pass with time or I'll just have to figure an end run around somehow? The slight headache is new but is no where near what I would classify as a January 1st type! Har! What about Tylenol? I know we couldn't (or shouldn't) use with gleevec. Is that the same for sprycel? I know you aren't supposed to use aspirin. Anyone know for sure? Keep holding in there Pat! Thanks!

Tracy

[hannibellemo]

Tracy,

Telling a control freak they can only control so much... LOL! I have to pull out the old relaxation CDs!

I took Prilosec OTC daily for 7 years and when my liver enzymes shot up I was taken off both G and that at the same time. I wasn't sure how I was going to survive. Dr. L talked to another colleague at Mayo to see if there was anything else I could take that wouldn't have liver interaction and he said I could take Pepcid. When I realized that I would probably be switched and not put back on G I decided to just take Tums as needed, I never did try Pepcid. Amazingly, I have had relatively few problems; I didn't have the dreaded acid rebound they talk about when quitting Prilosec cold turkey.

One switch I did make about 5 years ago was to cut out the white and simple carbohydrates in my diet. That helped back then and seems to be helping now. Of course, you will have to pry dark chocolate out of my hands - I won't give that up for anything!

According to the prescribing information, rashes (including all types) were nearly as prevalent in the trials as pleural effusion - 17% vs 18%. I'll take a minor rash, thank you very much, any day!

I still get chills, I noticed with G my normal body temp dropped to about 97.5 - 98 degrees, and this early winter is not helping.

Take are and keep me posted on your progress. I think it will be 2 months before they do the first DNA test and I'm due in Dec/Jan for a BMB/A (whoopie).

Pat

[janekaye]

Hi Pat,

I hate to say this, but rashes have been the most bothersome of all the Sprycel side effects for me.  In the first few months, I had MAJOR issues with horrible eczema, large dry patches of skin, itching, etc., etc.  Pretty nasty stuff.  Eventually my oncologist just said that I needed to see a dermatolist, which I did.  Things are now under control, thanks to a very expensive skin cream.  I think you're right about rashes being a prevalent side effect of this drug, so I would watch how things progress on that front.  I waited way too long to address the issue.

When I first started on Sprycel, I also took a Tums about two hours after the medication, as instructed by my doctor - even when I didn't think I needed it.  Lately, I've not had to do that, although (like you) I took many antacid meds (RX and OTC) over the years.  I stopped my Aciphex when I started on Sprycel, having been told that the drug operates best in the presence of stomach acid (great, huh?!).  Just what we need.

However, all else is going well, and I'm thrilled to have made the switch from Gleevec.

Take care, and keep us posted,

-janekaye

[hannibellemo]

janekaye,

When I first read about dasatinib needing to be taken without food and with acid present in the stomach my first thought was, "I'll never be able to take that".

Thanks for the heads up on your skin problems, I don't actually see my local onc until the end of October but I go in to the Cancer Center every Friday for labs so I'll ask his nurse to see if they can get me a referral to a dermatologist if I'm still having issues. My face felt really inflamed yesterday, it's still irritated but the inflammation doesn't seem to be nearly as bad.

I take my dose at 1 - so far no more gi issues, the headache is very manageable without anything.

I think Tracy said something about needing meds for hers and wondered about Tylenol. With my liver issues on G I can't recommend Tylenol for anything (and I never even took Tylenol), I'm not even drinking.     That's usually no biggie but I'm going to San Francisco next week with my best friend to visit her daughter and take in some of the wineries in the Russian River Valley. Guess it won't be too difficult to figure out who the designated driver will be. Maybe I can try sipping, swishing, and spitting. Yeah, right!

Well, I have to go do some mind exercises. We control freaks expend an awful lot of energy keeping planes in the air and I need to be prepared!

Pat

[cfoley1215]

Thanks for the reminder to discuss my prilosec with my onc.  I'm not supremely worried as I take the prilosec in the morning and the sprycel at night.  And, also, because sprycel is designed as a replacement for 800mg of gleevec and I was pcru on 400mg, but I am trying to remember to double check with him.  I have to take something, I have reflux and have been known to have bouts of gastritis so bad it was almost ulcerated.  Ulcerated?  Is that even a word?

[hannibellemo]

Yes, it's a word and it doesn't sound like it was a pleasant one for you. For some of us, even if it isn't optimal, there are some medications that just need to be taken - regardless. Good luck.

Pat

[td1961]

Pat,

Just to eliminate any confusion. My apple has a stem on it. AKA... I'm a boy! Or rather, an old man! Har! The sixties gave us many things and one of them were boy Tracys'. When I ask my mom why I was duly honored, she said that I was named after Spencer Tracy. I wondered why not just "Spencer" then!? It's too late now. It's become a moral imperative. On the sprycel front, other than the typical gastrointestinal problems, the symptoms compared to high dose gleevec are much less noticeable! I did take only 50 mg yesterday because I had a couple symptoms crop up like nausea while driving, not a good thing! And for some reason, I really had a bad case of acid indigestion and figured that I needed a break! Back to 100 mg today. Took them about 3 hours apart earlier in the day to see if I can get the acid indigestion over with before bedtime. I'm having trouble keeping off the acid reducers at night! Sleep is not something I can afford to lose much of.

Regards,

Tracy

[hannibellemo]

Tracy,

Thanks for the clarification, when I was referring to "us" though I meant CMLers. Pat is kind of androginous, too, but I guess "hannibelle" is fairly specific. Still struggling. I have the wind burned feeling face, irritated gums, and about 6 hours after I take it I get "the trembles" nothing near as bad as the first night, though and, knock on wood, no repeat of the vomiting.

Talked to the doctor today (through his nurse) and he encouraged me to hang in there and perhaps these side effects would go away, too. So, here I am - hangin'! Thank heavens for all of you!

Pat

[td1961]

Pat,

Yeah, like the SNL character Pat that was popular some time ago. Har! Well, I'm sorry that you are still having issues. Maybe you could get your doctor to get you 50 mg tablets instead? And allow you to triturate your way into it like I'm doing. That's what I was afraid of in the first place. I think that being able to put my toes in the water before becoming fully immersed has helped immensely! It worked for gleevec and it seems to work for sprycel. I'm going to ask my doctor to keep me on 50 mg times 2 a day so I have a choice. At least for a while...  He may not do it, but I can ask. After all, it's my body and my side effects. As long as the total daily dose is achieved, who cares how we get there? I should think that they (doctors) would be more concerned about the side effects and toxicity problems that could result. Sounds more like "white coat god syndrome" than pure scientific logic?! 'Cause I said so!

Tracy