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Please help, questions about side effects, numbers up and down

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#1 Txmom.4


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Posted 23 October 2011 - 12:50 PM

I have been on Sprycel for 9 days.  Two days ago I started spiking temp, chills, diarrhea & went to outpatient area of hospital for vital sign & lab draw.  Temp went down with Advil, still feel like I have the flu, especially after I sleep & wake up.  My wbc went from 79.5 down to 22.6 on Friday.  Today, I woke up again with fever 101.3, went in for cbc and vital sign check.  Now I have a horrible rash on back of my arms, legs, few spots on face, it looks terrible, I look like I have a disease for sure.  Today's lab showed a wbc of 32, it went back up, is this normal??? Will this rash get better??? Will feeling like I have the flu get better? I am so down today, thought I was doing well with meds and now all this.  Please help!

#2 Trey


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Posted 23 October 2011 - 01:12 PM

Sprycel seems to be the one TKI drug which is most likely to cause a miserable first few weeks.  After that, things generally settle down.  The fever is a bit unusual but not unheard of.  Also the WBC fluctuations are not an issue.  You could have your WBC checked in the morning and again in the afternoon and the results could easily be different in one direction or the other.  Also, your body is trying to figure out whether to create an immunity response to the drug, rash, etc. so the WBC could jump around because of that.  So I would give it some time and not be overly concerned about these initial day to day issues unless they become severe.

#3 Guest_billronm_*

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Posted 23 October 2011 - 04:20 PM

Dear Txmom,

  I'm so sorry you got nailed out of the blue like you did. I have talked to a lot of people on Sprycel who say they feel like they have the flu. Sometimes I think it's better to get the bad side effects right away than to deal with your dx and not many side effects at first then to get hit with them less than a couple weeks later. You just start to think that you can cope with this  illness after all and boom the terror comes back right away all over again. I told you I got pneumonia 3 weeks after dx and ran a fever off and on all 3 years I was on Gleevac,. but I would feel awful 1 day and fine the next day. I know it's really hard but please try to calm yourself down. I think it was dragonfly who said he learned to meditate. I want to try that but when I lay down and try to focus on nothing my mind goes into high gear of what ifs.I have an old fashioned walkman with headphones and I buy subliminal tapes you know the kind soft rainfalls or the sea shore. I have a really cool one of whales singing.Musical tapes distract you and you want to sing along so those are a no=no. I'm sure you don't feel like singing right now. The fact that you went and got checked out the last couple days means if anything was seriously wrong you would know it. I get chest pains but I just had a full cardio workup in June so I remind myself of that and put a bra on and they go away. I'm not a very big person but as you get older the old hooters keep growing I didn't know skin could stretch so much.  There is no modesty on this site so feel free to ask any question no matter how personal. We all have the same parts and wierd things happen to these parts and everyone has had one part or another go haywire and we usually can give someone advice because it happened to them.

  But always check with your onc first don't try anything until you know it's safe. When I first went on Sprycel I got the headache and probably a lot of other things for the first 2 weeks. I just don't remember them but yesterday I heard about the potatoe remedy I wouldn't have called onc but I would use the potatoes. It seems like these crazy side-effects pop up any time they want to. And just when you think you've had them all anotherone pops up to surprise you. It works the same way with nervous conditions.

   I hear a lot about Sprycel causing all kinds of rashes. I thought I was the perfect candidate because I have always had sensitive skin. Lo and behold no rash and I went on it last November.Then over a month ago I got a rash all around the outside of my lips. It looks like I was kissing a large mouth Bass. It doesn't burn or itch it's just there. I tried all kinds of creams and lotions nothing works. So I go to cc center tomorrow  for bw and I'll ask onc for a script. Just about all side effects can be handeled.

  Most importantly I have the utmost faith in Trey and his friends and if they say don't worry I don't. They haven't steered me wrong yet. But they do tell you to get things checked out with doc. And they are right no harm in a second opinion so I check with doc too. As time goes on these crazy side effects will pop up but they go away.

   Another positive thing is we usually have our biggest problems on a wednesday or a weekend when Doogie Houser is on call.And our doctors are on the golf course drowning thier sorrows at the 19th hole.With thier cell phones off. You were able to get checked out by a grown-up yesterday and today. Try to focus on that.

  We all know it's so very very hard none of us like surprises like this but they do happen,not so bad but try to take it in stride. And don't kiss any large mouth Bass or you'll look like me. Sure hope Doc has something for this.      Sincerely Billie

Message was edited by: billronm@roadrunner.com

#4 pammartin


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Posted 24 October 2011 - 09:06 PM

I have been on Sprycel for 7 days, I had the severe headaches, (they are still here but manageable now, even mild to nothing at times).  I have to admit I have checked over my body more than I have (or wanted to) this past week than I have in the past five years.  At almost fifty, I am do not consider myself 'mirror friendly anymore.  Although I have seen views I have not cared to look at for a long time, I do not yet have any form of rash.  That being said, I will await the symptom, because now that I said it out loud, am sure I will have something similiar to Billie's bass mouth one by the weekend.

So far, one of the positives is there seems to be a treatment for almost every side effect of Sprycel, and they seem to work from what I have read from the people working through these symptoms.  I have felt like my bones ached and my joints have given me some problems this past week, I also had two nights of what I would describe as neuropathy.  That kind of felt like I lit one of those sparklers we used to hold at the 4th of July and stuck it into my wrist occasionally just for fun.  I have to real information for you, but wanted to tell you I am listening and will continue to listen.  Much to my dismay I wrote to someone here today I kind of hoped they had the flu, it isn't such a bad thing compared to CML difficulties, although I will not wish the flu on anyone including you, perhaps this is one of those issues we deal with that has nothing to do with the CML, instead we have come across someone who did not care to wash their hands and try not to spread germs after they sneezed in their hand.  They touched the door handle, you touched the door handle, the writing is on the wall.

One thing I am trying (emphasis on the trying word) is not to loose the idea although I have a serious disease, I also have a human body that reacts to all sorts of things, even things that are not CML related.  You are staying on top of this, and when we are this diligent changes will occur and we see them immediately.  To borrow from a fellow CML person here, they wrote "A few years ago, I would have taken advil and went to bed, now I worry about things and if they are just 'things' or CML things.

I hope you have some answers soon, to rest your mind, but in the mean time, we are all here for you, and wait to hear you are feeling better.

Take Care


#5 jrsboo


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Posted 25 October 2011 - 06:39 PM

Dear T,

Sorry you have been subjected to so many of the side effects.  They do subside.  I have been on Sprycel for one year now.  Each day is different, let me preface the rest of this email by saying I am very sensitive to drugs, and each of us has their own journey with the TKI's. 

Some of the side effects I get and what I do about them (note: they all cycle in and out, I don't think that they have all appeared at the same time):

1. Mouth Sores: the tip of my tongue doesn't regenerate itself the way the rest does (the inside of your mouth completely regenerates every two weeks due to such high use) so I am prone to what I call tongue lesions.  You can see them as a white areas surrounding  brighter pink areas that hurt.  This usually only lasts a day or two.  When they are very bad I use "Magic Mouthwash" from the cancer center pharmacy.  Other pharmacies have had no idea what the hell I was asking for with my prescription.  Sigh.  Magic mouthwash is a mix of lidocaine, maloxx and something else.  I went to the dentist that works at the cancer center, she is the one who told me what was going on and gave me the prescription.

2.  Fatigue.  I must have slept the first month almost solid.  Spent the next 3 months on the couch watching wedding dress shows, because I could fall asleep and wake up and they were still trying on pretty white dresses.  I didn't miss anything.  My energy has come up, but is NOT what it was.  I was an energizer bunny of a person.  And now I am so much slower.  Sadly.  The onc kept saying that it would get better. But at last meeting, decided this was about as good as I was going to get.  She offered to try Ritalin to see if that would perk me up.  I declined.  Too many drugs already.  I can operate with the amount of fatigue I have, it cycles in and out. 

3.  Bone Pain.  I have cycles of pain, usually last about a week then go away for a month or two.  The pain is mostly in my upper thighs and feels like the bones are going to explode from the inside out.  Onc has prescribed both morphine and dilaudid, which I keep on hand at all times just in case.  I find it hard to take that strong of a pain killer, I am afraid of them, but when the pain is bad, that is the only thing that helps.  I cannot take any of the over the counter pain medicine, I start to pass blood when I do--told you I was sensitive!

4. Hair Loss: Mostly the first 4-5 months, didn't start right away, but I would lose handfuls a day, in the shower and filling up the hair brush.  Eventually it subsided and I am back to my normal amount of daily hair in the hair brush.  I did not do anything about this one (other than cry).  I have very long curly hair (almost to my butt) and it was extremely thick to begin with.  Although I am left with a thinning on the front part of my scalp.  Waiting to see if it comes back.  Strangely, the rest of the hair on my body either fell out or came in much much thinner.......and white.  Very odd to see that in the mirror, the carpet no longer matches the drapes.    My legs are virtually hairless now, haven't had to shave them but once in the past year.  And the hair on my arms is very very thin and fine.

5.  Skin issues.  Where to start.....Have gone up and down with angry hair follicles on my arms all the way up to my shoulders.  Haven't found anything that helps with that.  Sometimes it itches but most of the time it does not.  Just very bumpy and red looking.  The skin on my face has changed.  It feels thicker and has an underlying redness to it, kind of blotchy, but you have to be very close to be able to distinguish the blotches.  Dermatologist prescribed Desonide, but told me not to use too much as it thins the skin.  So I don't usually use it at all on my face.  As I am a larger person, there are some skin folds (sadly) and I am prone to these odd fungal infections from the TKI, never had these before.  The skin just seems to dissolve, very painful.  Dermotologist has prescribed Naftin to be used with the Desonide mixed together.  The compound freakin' burns when it goes on, but it clears up the infection within hours. 

6.  Brain Fog.  Technically called Cognitive Disruption.  I was having so much trouble with this (and as an attorney, this is very bad) that I was tested at the University of WA.  The result was quantifiable disruption with the most visible areas being short term auditory memory and lessened ability to do complex thinking.   I have trouble remembering what others say to me (even right away), have difficulty with "losing" words, and also for some reason don't remember new faces.  I remember old ones just fine.  But clients I met after starting the drugs, I just don't remember their faces.  Walked right past two of them on two separate occasions and not only didn't recognize them, but their faces never became familiar.  It was as if I was meeting them for the first time.   So I don't work much anymore.  I had had my own law office for 8 years and gave most of my clients away and now am very picky about who I take on.  Super lucky to have the husband I have, very supportive emotionally and financially.

7.  GI issues.  I haven't been nauseous.  But I can no longer eat garlic without clearing the room about an hour later.  And there is the embarrassing "leakage".  No warning, don't feel it happening.  So I go and check often.  I also have to piddle constantly.  Not sure if that is a CML thing or just getting older.

8.  Nails.  Now here is a GOOD side effect.  My nails are beautiful for the first time in my life.  Strong and well shaped with very white ends.  Looks like I have a french manicure all the time.  They used to be brittle and peel.  And if they grew at all they would curl on the edges.  I like this one!

9.  Infections in general.  It seems that I get them more often and they last longer.  I can't fight them on my own.  Example: I kicked something and hurt my toe, causing it to bleed.  After a couple of months complaining to the onc about it, it was painful to walk, it was looking odd, etc and the onc looking and saying "it is a toe fungus" but knowing it was not, I finally went to the podiatrist, and it was an infection.  Poor toe lost its nail and the podiatrist trimmed away a portion of my toe.  Strangely it didn't hurt at all, and I was sure it was going to!   A few weeks of ointment and it was healed.  I also have a recurring ear infection that just won't get killed off.  I am always having to resort to the ear drops (prescription) for a week or so, it seems cleared, but then a month later it is back.  This is on the list of things to look at more closely with new PCP.  Sadly my old PCP was actually old and retired.  So I am now super careful about scratches and things and slap neosporin on anything that looks like it needs it.

10.  Tennis Elbow/Shoulder bone spurs:  Apparently, the TKI's inhibit the body's "platelet driven growth factor" which is what helps your tendons to heal.  6 months before being diagnosed I had injured my elbow and shoulder.  I have tried physical therapy and while that helped a little, it didn't do much, so I remain on Meloxicam for the pain, but I have to admit that my elbow seems to have finally healed and I am going to try this week to not take the Meloxicam and see how my shoulder does.  The shoulder is actually worse that the elbow, and I have been getting cortisone shots in it for a year now.  The orthopedist and I are experimenting with the shots/meloxicam/physical therapy and he agree to let it ride for a few more months and then reevaluate. 

That is all I can remember right now.................

Don't panic, I just wanted there to be a comprehensive list with remedies that you could look at.  I hope that that helps!


#6 jjg


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Posted 25 October 2011 - 08:59 PM

Hi Caroline,

Relatively speaking (compared to me and many others on here) you're getting smashed by the side effects, I mean wow that is quite a list. I am however very jealous about your nails. How is the treatment going - are the phillies feeling the effects of the drug as much as you are? Would you ever consider a drug reduction?

I'm very interested in your comments on the Cognitive Disruption. My brain is my living too. I'm on G but I can relate to a lot of what you said, although not at the same severity. The loosing words - yes!!! Sometimes I can even see them piling up in my head trying to get out. Sometimes bits of the words get out but in the wrong order or I substitute (which can be pretty funny). After 8.5 months I'm seeing real improvements and it's much easier to work out what the effects actually are/were - previously there was too much fog to see the fog. The one that got me most was the ability to get myself going both physically and mentally. In my mind I could see that I wanted to do/say things but with the effort to follow through nothing happened. Even when I was so tired I needed to lie down I'd sit there not being able to get going from chair to couch. I was beating myself up - lazy, unmotivated, dumb and just down.  But eventually I came to recognize a real drug barrier my mind has to get over, which I've decided is not me and not my fault. I've found is that with the right prompts I can often get my mind going. I was able to lecture quite complex subjects because the points on the sides got me over that barrier (& having 200 eyes on you does also help with motivation). The same with small meetings or one on one conversations - without knowing it other people got me going. Of course there were some times when that is not possible and many other times when that was exhausting. When I'm feeling good I need to organise prompts for when I'm feeling bad. For me it seems that the worst is over with this side effect. But I just wanted to say that it is a really sucky demeaning side effect and I hope it gets better for you.

Luckily for my sanity I have always had a window of feeling good between waking up and taking the drug with breakfast. I spent this time on myself (for me that is exercise often with my hubby) not on work. I feel a little bit guilty that there were days when I'd jog 10k before breakfast, then taken my drug and not be able to talk straight at work and need little naps... but I don't regret it.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017

#7 jrsboo


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Posted 26 October 2011 - 12:01 PM

Hi J,

The reason we are not talking about switching is that the Sprycel is doing so well.  I hit MMR in 6 months, granted I was caught really really early, my highest count was only 31.  And I guess I am less prone to switching because I have the luxury of not having to work much.  I recognize that I am the luckiest girl in the whole world to have found my husband.  I thank god for him everyday!

But I also didn't realize that I was getting more side effects than others.......hmmmm. 

I am so glad that you have found triggers to help you with your lost words and actions.  I fell in the Oregon woods this past weekend, all alone but for the dog, because I turned to move, and my feet stood still.  Very strange, but the dog came over and sniffed every inch of me to make sure I was ok (which I was), he is the best dog in the whole wide world, he stayed standing over me until I stood up.  I only had the wind knocked out of me for a moment.

The brain issue is among my worst.  And you are right, at first, you beat yourself up unmercifully.  I was thinking that I was slacking off, taking advantage of the diagnosis to stay at home and be a housewife.  Luckily, the aforementioned fabulous husband, once I told him that was my secret fear, looked at me like I was nutso and put my in place, making sure that I understood that it was the drug talking, not the real me.  And he is right.  I recently managed to forget the pill two days in a row (don't know how that happened!) and I was zinging all over the place, could have painted the house single handedly!  Met a friend for lunch, who took one look at me and said "WOW, you look fabulous!"  I had to admit the reason for it.  Went home and took my pill.  Fell over.  Back to the new me.

But like I said in my email, all the side effects don't hit me all at once.  The brain stuff is always there, some days I am a bit better than others, and if I am tired, forget about it!  (I did notice the day I had no TKI in me that I didn't lose any words, and didn't have any trouble remembering, in fact was able to be helpful at lunch with my attorney friend, as I had read a new case that morning that was right on point with helping her client--ah to be the old me all the time).

Anyway, life is still good.  It is just different now.



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