7 replies to this topic

[sunny27]

Hi Everyone,

I started Sprycel 100mg ten days back. Before that I was on Gleevec 400mg almost 6 years and tolerated it very well. First five days with Sprycel were very challenging, pounding headache in the morning with pain behind eyeballs and pain in the jaws that lasted till after lunch. 3rd and 4th day I was vomiting. All this went away by itself. Few days back , I had little sour throat and now I am running fever around 102. It goes away with rest and comes back around evening. I did take 500mg Tylenol yesterday but plan on not taking any today. My temp is 100.8 right now. I did call the oncologist yesterday, nurse said call us if fever is around 102 or more. I plan on calling the nurse tomorrow.

It is gloomy in Michigan. My wife and boy are little sad. She is primary sad after seeing me through five days of side effects and now fever, cough that is keeping me in bed. Every year, we travel around this time. I thought about it and  decided that we should travel. I booked the 12 days travel starting on 16th Dec, that will include, Grand Canyon, SFO, LA (disney world) and San Diego. I am worried though about fever and other side effects during travel. I will like to hear your views/suggestions if you have traveled soon after starting Sprycel on how can I plan better.

Thanks,

Sunny

[hannibellemo]

Sunny,

I've been on Sprycel for two years and I've never run a fever without having a reason to do so, so I don't have much help for you there. I will say that many of us have been told to call or go to ER if temp goes above 100.5.  102 seems a bit high to wait to check it out.

I live in the midwest and flew to San Francisco 3 weeks after a very rocky start on Sprycel (after switching from G due to liver toxicity). Had a great time!

Because of your fever of unknown origin I would probably play it safe and get a CBC and Chem panel just to make sure.

Sounds like a fun trip!

Pat

[scuba]

Sunny,

First thing - no more Tylenol.  It is very bad on the liver - especially when you are taking a new drug like Sprycel.  Also - since you are starting on full 100mg dose of Sprycel - very important to have a CBC within a few days to see if you are having any myelosuppression.  The ANC measure is very important.  Low Neutrophils lowers your guard against bacteria.  Sore throat, fever - bad combo.  Get checked.

I was checked every week and after only two weeks I had to be taken off Sprycel altogether for - what turned out to be - three months due to myelosuppression. 

ANC below 1.0 is cause for concern with fevers - especially fevers above 101.  ANC below 0.5 is emergency room for fever.  The fever may just be the flu (viral - not bacterial) since you say it comes and goes.  Best to have it checked.

Good luck with this,

Michael

[grimm4434]

sunny,

I have been on Sprycel since January 2011 after being Diagnosed CML with PH+ marker. I experienced similar headaches and pain as you mentioned but went away after a couple weeks. I was given an anti nausea prescription right off the bat and took it for the first 30 days before I stopped. Probably made a difference for me.

You most likely will have other side affects but I am sure they are different for each user. I have a persistant rash on my fore arms. My entire upper torsoe aquired severe acne about six months in. It is finally starting to subside. For me, I have found Oxy Acne Solutions esfoliating body scrub to help keep it at bay when at its worst. I have also experienced annal fisures. Very painful. Have found that taking daily doses of omega 3 fish oil helps. It also helps with joint pain as well. Cleared this with my doc recently.

I have experienced "Fog" over the past year as well and is very annoying. Hard to concentrate at times and I lose track of important things very easily.

Although have empathy for your current sufferings, I am glad to here you are six years into CML treatement. As a newly diagnosed person, I am fearful my remaining time is limited. My doctor tells me wonderful things about Sprycel, but it has not been on the market long enough for statiscals. However, I have been reading some Gleevec users are healthy nearing 17 years of usage.

[sunny27]

Thanks all for response.

.

I was 33 when I was diagnosed, my son was 2. I had wonderful 6 years on Gleevec. I played hockey, did roller blades, swimming and spent wonderful 6 more years with my boy, I also achieved 2 promotions at work. All during this time, I went to all my appointments by myself except first appointment when I took my wife with me. The reason was that I did not want to make her feel that her husband is sick. I kept my spirits high. It worked great. In Nov, my doc at University of Michigan Cancer Center did BMB and PCR and told me I have a mutation and put me on Sprycel. I can tell my spirits are not as good as they were when I was on Gleevec. My wife is more concerned may be because she can read my face well. But I hope and pray that it is temporary. I will love to see my son through school and college and will love to walk with my wife everyday on walk trails (our favorite time together) and take care of her when we are old. But each day is blessing and I love waking up in the morning and being able to go to work. If I can not, like last few days have been, it depresses me. Just checked my fever, it is going up, so have to call my Doc first thing tomorrow morning.

Sunny

[random]

HI Sunny,

Can you be more specific about the mutation? And how where your values when you moved to Sprycel?

[jrsboo]

Dear Sunny,

I traveled right away after starting on Sprycel in Oct. 2010.  I think my husband wanted it to all be "all right" so he kept booking little vacations.  I am just super careful about planes, I make them give me a wheelchair most of the time, since I can't run between planes, and sometimes can't make it all the way to the far away gates when I have bone pain or fatigue (much worse when I started, this has gotten better, although this week sucks), I get on the plane early when they ask for people who need assistance, and I use the extra time to wipe down every surface I can find with lysol wipes.  I also wear a mask for the duration of the flight.  I know there are some out there who would say that the mask doesn't really do anything.  But it makes people give you more space, and if they aren't breathing on you, it can only help!

But I think the important thing was that I got out there and did as much as I could.  I rested a lot and we couldn't go go go like normal. But I didn't let the cml stop me.

Good luck and enjoy the vacation!

Caroline