19 replies to this topic

[August1]

Hi Everyone,

I am new to the forum. I am 43 years old with 4 kids and was diagnosed with CML just over a year ago with WBC of 240,000. After one year on Gleevac 400 mg I was in CCyR with my PCR < 1%.

During that time I had some of the typical side effects including some GI issues which were concerning. I had upper and lower GI endoscopy which showed some mild inflammation. I also had a CT scan done which was normal. My doctor suggested moving over to Sprycel following the CT scan. Since that time the GI issues are much better. 

The one issue is that after the change I notice very small red bumps popping up on my abdomen and outside of my shoulders. My face also feels warm. At first I was concerned this might indicate a complication with my CML.  Given the radiation exposure from the recent CT scan I was afraid that there could be a very small chance of the rash indicating progression of CML to AML. The good news is that I just got off the phone with my Onc. and my CBC, CMP, and liver function are all normal as of today and I have no fever.

Has anyone experienced this before or would you have any advice? 

Thank you, any feedback appreciated.

Bill

Stay strong and be positive. Every day is a blessing and every breath a gift.

[jrsboo]

yup, had both petechiae (small red bumps) and my face would get very warm and turn red, looked like I had  sunburn.  It would come and go.  Been on Sprycel for most of 3 years, just reduced to 50 mg instead of 100.  Not so much with the warm face anymore, but noticed the petechiae returning the other day.

--Caroline

[Tedsey]

Although I have always gotten petechiae, it seems to be much more often after starting Sprycel.  So, petechiae (usually on my neck and chest).

Tedsey

[mikefromillinois]

Hi Bill,

I've been on Sprycel for two years. I too get the warm face.  Pre-CML I was always outdoors a lot, and I tanned very easily - never getting a sunburn.  When I first started taking Sprycel, if I was outdoors or even riding in a car in sunlight (with the sun reflecting into the car off the hood, and so on) it felt like my skin was on fire.  Long story short, sun sensitivity sometimes comes with Sprycel (and other drugs, too).  Two years later most of that has gone away and I can be in the sun like old times.  I can't stay in the sun as long as I used to, but my lifestyle is no longer compromised.  I do still get the warm face though.  If I'm out in the sun too much, that evening my face will feel warm like a sunburn, even though it doesn't look sunburnt.  It feels like I have a fever but my temperature is okay.  I too get those tiny skin eruptions all over.  That side effect doesn't seem to be going away.

It's always good to run this stuff past your doc though.

Here's wishing you good health and many happy days Bill.  Take care...

Mike

[August1]

Caroline, Tedsey, and Mike,

Thank you all very much for the replies. It seems like I do have the exact same symptoms you've each described. It's very relieving to know that this can occur on Sprycel. Hopefully I can continue to see good results and then maybe reduce my dose in the future. I will certainly keep an eye on everything and keep my doctors in the loop.

Again, thank you, I appreciate your feedback and best wishes to you all!

Bill

[CallMeLucky]

I have the exact same thing.  I see it as typical for Sprycel.

[mdszj]

I take 100 mg Sprycel and also get small red spots/bumps/acne all over my body.  I also have some fluid retention, mostly around my stomach area.  Neither one is really very bad so it is not that big an issue for me.

[Teresabourgeois]

Same for me!  Hate it too

[Dona_B]

Any of you Sprycel patients get sun sick with chills and vomitting? I was out in the heat yesterday and could feel my skin burning although I didn't get sunburn or sweat excessively but early this morning I woke to chills, nausea, etc... Don't think it was food poisoning as the rest of the family didn't get sick. After a few hours, I'm okay but drained.

[JBow82]

Hello all,
I was diagnosed 01-2012 and started on Gleevec. Bone pain was horrific so I switched to 100mg sprycel. I also had the tiny red bumps on my abdomen however they went away and haven't had that issues for over a year. The issue I have had since starting sprycel, March 2012, is lower right side abdominal pain (achy sometimes stabbing). Very localized pain. CT scans among other imaging, exploratory surgery, colonoscopy, and recently recovering from a hysterectomy at the age of 33. I am so over this pain! Anybody else going through similar side effects?

[ChrisC]

Hi All,

 

I'll just mention, FWIW, that I still get overwhelmed by heat and have to retreat from it, even after being off Sprycel for almost four years (after being PCRU for two years). Still wonder why I got CML, and still wonder why it went away for me and not for everyone else. I have no answers to offer. Just encouragement to everyone.

 

I still have fatigue, still have some ongoing brain fog, still have bone/muscle/joint pains (and arthritis everywhere: why? and, I love my new knee!), still live with funny bumps on my skin, still can't hear, still wonder about why my eyes are changing, etc. The whole shebang.

 

It may be "that's life," it may be residual effects of TKIs. I don't know.

 

I'm just saying that having had CML and been blessed with a miraculous "recovery" starting with reaching PCRU at 11 months, then staying on Sprycel 100mg for two years w/o having any blips in my PCRU readings, then quitting medication for good in Sept. 2011 — with permission and support from the specialist at Stanford and from my hema/onc — almost four years later I am still dealing with hearing loss and arthritis and so on.

 

I take no medications, I eat organic, I meditate, I love life. I still read this forum every so often. I appreciate every question and every response written here, and feel for everyone's situation. Everyone matters so much in our world of CML survivors, and I remember and cherish all those who have passed, having shared their journey and ideas and love with us.

 

And all the while I wonder if there was/is anything else I can do to increase my energy — my PCP says that after 10 years of fatigue, including the CML dx and treatment, and every test we can run and then getting "normal" results, we have to put it in the category of "Chronic Fatigue Syndrome." 

 

Right, I hear you who say keep exercising: if you only knew that I wish it could be so.

 

I guess that I am saying that dreaming of a day when all of this CML stuff will go away, or that living with it day-to-day does eventually become completely acceptable given the alternative, or that gripping about it in order to deal with it: from my point of view that is exactly right.

 

There is no wrong way to deal with it.

 

Dream the dreams, go for it, accept it, do your best, make a wish and make it happen.

 

Cry. Love. Give in. Fight. 

 

Aren't we wonderful, all together making the best of what we've been dealt? 

 

I certainly think so. Congratulations, everyone. WE WIN, no matter what the doctors or family member say or don't say. 

 

We LIVE!

 

Yay us all. God bless.

 

ChrisC

[hannibellemo]

I don't think of petechiae as red bumps, I wonder if that is a rash of some sort? Petechiae are small hemorrhages related to low, or, particularly, in the case of dasatinib, inefficient platelets and they appear as small red flat spots. I have both, but generally get the petchiae on my hands, fingers and forearms.

 

This summer I have had many weird skin issues. The most interesting are bites which develop large, red, circles of histimine, not bull's eyes like lyme disease, just very itchy. I've had too many to be caused by ticks. Once I had 3 in a straight line on my upper arm. As I said, weird.

 

They seem to have settled down and I wonder if they aren't flea bites. My dog is using the new Nexgard chewables and I've read that even though it is a neurotoxin that starts working immediately on the fleas they may not die for 24 hours. I have seen a couple on the surface of her hair and that is described as unusual behavior for fleas as they generally stay close to the skin (for obvious reasons) but the toxic effect of the drug causes this. We live on an acreage and she likes to stick her head in every pocket gopher hole she finds!

 

One of the more unusual side effects of Sprycel, having to learn more about the life cycle of the flea! 

[JBow82]

LOL I had to laugh about the flea bites. I went through the same thing when I was first diagnosed. My poor dog went through baths, topical treatments, and many flea collars. When I went to a doctors appointment and complained about these red bumps sometimes itchy. My doctor said that it's a symptom for irregular levels. I kind of understood it as to having an infection in your body and your body pushing out the toxins and virus through the pores in your skin. Sometimes when you have a cold you'll develop sores on your tongue or rashes. When your body is overwhelmed with blood cells it works over time to get rid of them. This was the cause for what I thought were flea bites. Definitely contact your dr and see if this is the same for you.

[RedH]

Hi, first time I've joined in the forum discussions.  I was just diagnosed with CML in January, so still getting use to all the issues and side effects.  I'm on the 100mg of Sprycel also.  I have the warm face pretty regularly, the lack of the energy I use to have, and the big kicker for me is the hair loss.  I have "maybe" a quarter of the hair I use to have.  Very noticeable I believe.  On some of the discussion boards they say this happens with some of the TKI's.  Some say it's about an avg of 6 mos or so until your body gets use to the drug or the diagnosis.  Has anyone else had the loss of hair issue with Sprycel? I've been on it for about 6 mos or so, so I was hoping this would turn the corner soon.  Other than that, just getting use to this. Many questions about if I'll have this forever, if it gets better?  I guess I'm lucky I don't have any real drastic health side effects from the medication.  It's great reading all your comments for someone like me that is kind of new to all this.  Thanks so much!

[mlk210]

RedH - I had hair loss. I have thick hair so it was terribly noticeable. But I remember in the shower and after, running my hand over my hair and pulling out wads (not a clump, but handfuls of individual strands). My hair was everywhere. On the couch, the bathroom floor, and wound in little balls in our dryer. My kids constantly picking it off my shoulders and shirts. I finally cut my hair shorter because I couldn't handle it any longer.

 

I just hit a year on medicine (Sprycel 100mg) and my hair loss is back to where it was before I started Sprycel. I would say it started to decrease around six to nine months.

[Billie Murawski]

Hi RH,

  Welcome to our exclusive club, I'm so glad you found us everybody on the board will help you in any way they can. I'm 8 years since dx. I was on Gleevac for 3 years and my hair got very curly and very grey, it was long but I had it cut shortly after dx, because I was not sure if I should keep coloring it or not. I got over that real quick, hair loss was no problem for me. After 3 years I went on Sprycel 100mg

and that is when my hair started to thin out a lot I became very anemic and had to have iron infusions a few times. I think that was my biggest problem with hair loss, plus I had no appetite so I just couldn't eat. I had myself pretty run down. In Jan of this year I started eating better, (not healthier just a lot more ) just kidding but I started taking vit B12 2000iu a day and my hair is really getting thicker.

My husband quit smoking last Dec and I gained 9 pounds so far hell I don't even need to eat food I think looking at it slaps fat all over my body!  So I'm sure your hair loss is just temporary, don't be stupid like me and let yourself get run down.  So I just waddle around now but I have hair.         sincerely Billie

[dede5]

 

 I gained 9 pounds so far hell I don't even need to eat food I think looking at it slaps fat all over my body!  

Girl, I feel ya! Lost around 50 lbs before dx and have gained about 25 back. I'll cut back for a couple of weeks and drop 5, eat normally for 2 days and gain 10. That was the one good thing about all this and it's the only part that didn't last 

 

RedH, when I first started taking Sprycel 100, I was kind of like a shedding pet; hair everywhere. I came pretty close to having the Ben Franklin look, although not completely. After 4 years, it's mostly come back, though. Also get the warm face and fatigue has become a way of life for me, although I hear it doesn't last for everyone. Hope you're one of those 

[RedH]

Thanks for the encouragement!  I have not noticed any progress on getting my hair back yet, I thought it was slowing up falling out, but not too sure (optimistic thinking probably).  I sure hope it turns the corner soon - it's getting pretty bad.  With the lack of hair and what I believe this CML is doing to the bod I think I look about 10 yrs older - I'm old enough, don't need that any worse, but looking noticeably different.

I guess it would be worse with other side effects I've read about, but so far just the fatique, not sleeping well, drastic hair loss and the warm face most of the time.  I'm still kind of a newby with only 6 mos into this fun stuff, hopefully side effects will mellow with time.  Thanks so much for the talks.  I have told very few people about my diag so don't have too many to talk to.  Thanks, RedH

[chriskuo]

My hair has come back quite a bit since I switched to Bosulif.