41 replies to this topic

[TeddyB]

Hello.

I am 36 years old, from Norway. and was diagnosed 3.5 weeks ago with CML with an enlarged spleen and in Chronic phase.

I take Gleevec with my breakfast, and i disolve it in water cause those 400mg pills were abit to big for me to swallow whole. (Going to ask the Dr for 100mg pills instead on my next session)

Is it smart to drink alot of extra water when disolving Gleevec in water? Or could this have a bad effect? (I use the recommended water dosage from Novartis, plus i always drink a small glass after ive taken the Gleevec)

I was started on 400mg Gleevec and sent home, the Dr was optimistic, but i am very scared, and the thoughts in my head these days arent very pleasant.

After my 2 week checkup, my wbc leveles had dropped from 270 to 77, and my spleen had reduced alot in size, i take this as a good sign in just two weeks of treatment, and the Dr was pleased, but im still pretty scared.

Gleevec hasnt given me any serious side effects yet (knock on wood), but 4-5 days ago,i started having had a mild red rash on most of my body, some times its on my arms, sometimes on my legs, sometimes on my back, but today im feeling a bit better, and the itch isnt so bad.

Im realy hoping the rash gives up soon and goes away, im terrified of having to stop treatment because of a rash.

The rash came after spending half a day out in the sun in hot weather, with pants, but nothing else than a t-shirt on to cover my upper body and with no sun screen. (Yes i know should use a sunblock or simular now)

The rash also started on my arms and neck, the exposed areas.

I called the hospital on friday afternoon explaining to them about the rash, and they told me to wait until monday (today) and see if it was better. Well its abit better, but its still there, so i think i will call them again today or tomorrow.

Aloe Vera seems to calm the itch.but i havent needed any today.

Of other side effects, ive have had some very mild leg pains, but they went away, i had one red eye yesterday from what looked like a shot blood-wessel, and i stil havent been very nauseous or had any trouble with my stomach.

Trying to stay optimistic and keeping my hopes up, but its sometimes very hard.

Luckely, im eating and sleeping pretty well, its the rash that worries me the most now

If someone has any input, id be more than happy if you shared with me, thank you.

PS: I would like to thank everyone here for the input already provided to me, it has been very helpful, and of course sometimes scary, but im glad i have learned so much in such a short period after DX.

[tiouki]

Hello Teddy, welcome here!

I don't have much advice about your rash and gleevec since I am on sprycel (I am 22, diagnosed 9 months ago)

The only thing I have to say is that it is normal that your doctor is optimistic, because our disease is very well treaten with the drugs we have access to . Things will get better and better as you will see the results of the treatement (i.e. leukemia loses ground) and will get used to manage side effects.

Regarding side effects, especially rash, your doctor has many options : add another treatment to limit it, reduce dosage, switch to sprycel or tasigna, or simply wait that your body adapts to the drug and it might get better soon. I am quite sure that you will be able to control it

Good luck !

Pierre

[NotJack?]

Hey Teddy,

I had the same thing happen to me in the first month on Tasigna, which is similar to Gleevec.   It scared me a lot.  I was at a fair in the sun, and had to ditch the people that I was with to get 3 miles to the house of my brother.  My general oncologist was also concerned, but my CML speciallist calmed me down, and told me that it was something to keep and eye on, but to continue on the T.  The first month or two are the scariest, the fact that you are monitored so closely, and every number seems so significant.  It will take a short while to divest yourself of the leukemic cells, and then a while longer for your body to kick in and normalize the rest of your numbers.  Whatever side effects that you have initially, generally lessen considerably in a couple of months.  The CML specialists tend not to react as quickly to the numbers as a general oncologist because they are more knowledgable about the operation of these drugs than someone who only sees a couple of CML cases a year.  You will be fine, I was back playing hockey after a month or two.  I still get concerned, but now that my onc has moved my monitoring to monthly, I am generally becoming more relaxed. I was dx last August.  Take care,  Jack

[Susan61]

Hi Teddy:  I am on Gleevec since 2000, and have had CML since 1998.  Just telling you this so maybe it will lessen your anxiety.  I take 400mg every morning with breakfast. I have no problem swallowing the pill.  You should take a big glass of water with your medication.  You said your drinking water after you have dissolved your pill in water. I never heard of anyone dissolving it, but you could break your pill in two.  They are scored down the middle, and maybe if you take one half at a time to get your 400mg in you at once that would help instead of soaking a whole pill.

     The rash has been a side effect that a lot of people have had, and then after awhile they did not get it anymore.

You have to avoid the sun.  Thats no problem for me, as I am not a outdoor type person.  Actually, I do not get enough sunlight.  I remember reading about the direc sunlight should be avoided with Gleevec.  The other side effects that your having are all common, and your not on the Gleevec very long.  You will see them get better with time. I get fatigue, leg cramps, and I have had the blood shot eye which we refer to as a eyebleed, swelling in the eyes which I just put some ice on my eyelids to reduce the swelling.  I have never had it severe. Weight Gain.

     It does sound like your doing very well in a very short time.  Your counts came down, your spleen reduced.  Just take one day at a time, and if you have any unusual side effects then call your doctor.

   Glad you joined in with us, and as you can see its a very treatable disease.  You can live a normal life even with CML. Just get in here and ask any questions you have at anytime.  You will always find someone who has experienced what you have and able to help you.

Welcome

Susan61

[0vercast]

So you're just taking Gleevec, and not any other chemotherapy drug like Hydroxyurea?

It sounds like you're doing really well.  I had a handful of minor side effects the first month on Gleevec, like the itchy rash and minor leg pains you're experiencing.  Like almost every other side effect, they went away after about a month of treatment, and haven't returned.  I found that using quality, unscented lotion repeatedly during the day, and wearing soft, loose clothes or no clothes at all over the affected areas, helped make the rash more tolerable.  Also, taking short showers with cooler than usual water seemed lessen the itch and redness.  My rashes occurred in areas when skin-on-clothing friction would take place, like on my sides, upper back, elbows, knees, armpits, etc.

[TeddyB]

Thank you for all the replies

Im glad to hear my side effects are very common.

Its good to hear that the treatment methods for CML are so good now a days, of course i am still going to be scared, but its good to see how so many people live with CML and lead a perfectly normal life, and that the odds are so good.

tiouki: Glad to hear, i will ask my Dr about the rash on my next appointment if doesnt get much worse.

Jack: Glad to hear it passed, it seems mine is doing better now aswell

Susan 61: No scored 400mg tablets here in Norway apperently, ours is called Glivec though, but they might be safe to split anyway perhaps, if not, ill ask my Dr for 100mg tablets, those are actually scored

I will remember to stay out of direct sunlight, and if i have to be outside when its sunny i will limit my exposure and use a sunblock cream.

Overcast: Nope, just Gleevec and Allopourinol for lactic acid, nothing else, but they seem to be doing the trick for now at least. Next checkup is in next week, hoping for good results.

Going to bed now, hope the kids dont keep me up all night

[Mr._Bill]

Hi Teddy,

I was diagnosed with CML about 4 months ago, kinda scary at first. I also took Gleevec for the first month, then have been

on Tasigna ever since. My WBC was 265.5 pre treatment, and within normal range within about a month. I'm no expert, but

it looks to me like you are doing well from what you described. At this point I have blood work done once per month and see

my Dr. once every 3 months, and am learning to not think about the CML so much since I can't change the fact that I'm kinda

stuck with it for now at least. I from Oncologists how the TKI drugs have greatly improved the survival outlook for CML patients,

and that is encouraging to hear. I feel that in time you will be able to get on with your life, and not think about this as much.

Best of luck.

[GerryL]

Hi Teddy,

I took an antihistamine for the rash and also used an antiseptic cream on the rash. I had no itch and the rash disappeared within a week.

Just watch your sun exposure as Gleevec can play up with the pigmentation for some people. I take fish oil tablets which are supposed to help with the thinning skin and also your burn factor. The sun hasn't been an issue for me, but then I live in Australia and being careful in the sun is drilled into us at an early age.

[Trey]

Ted,

Any man who can drink dissolved Gleevec in a glass of water has my profound respect.  Do you wash it down with Lutefisk? 

I would simply wretch my intestines out. 

[pamsouth]

Regarding dissolving your Glevec.  Every month before my Glevec is shipped to me, Medco Accredo calls to do an assessment.  A few months Medco said a new rule came out that you are not to crush the Glevec.  I was surprised in who would want to crush Gleevec.

Wouldn't crushing the pill be the same as dissolving it in water?

PamSouth

[Antilogical]

PamSouth: My Rx provider is also Medco Accredo, and before they shipped my first dose of Gleevec to me 7 months ago, they warned me not to crush the pill or breathe in the particles.

TeddyB:  I have had the Gleevec rash on my face, arms and chest. My doctor said to use Benadryl or Claritin. Both have worked for me - the rash is somewhat faded and is not as itchy. If only I could find something that worked as well on my swollen ankles.

[TeddyB]

Mr._Bill: Thank you, im hoping it wont be on my mind all the time as well someday soon.

GerryL: Glad to hear your rash cleared up, im hoping mine will go away as well, i am taking Zyrtec (Antihistamine) at the moment, hoping that will help.

Trey: No Lutefisk, but i do eat 2 slices of bread with goat cheese with abit of strawberry jam on top every morning. And i do agree, it does not taste too good, but the 2-3 first times were the worst, no problems now, skål

Pamsouth/Antilocigal: Apperantly its ok to disolve it in water or applejuice using a spoon to stir the contents. (Says so on the Glivec pamphlet, and ive also read this several other places)

I have read some place that Novartis actually recommends this to help ease nausea: http://gistsupport.medshelf.org/Nausea

"

Dissolving in water or juice: One strategy suggested by manufacturer Novartis is to dissolve the dose in a large glass of water or apple juice and drink it immediately.

"

Hope your ankles get better soon Antilogical.

Anyway, seems that the rash comes and goes a bit, its not to bad now

[pammartin]

Hi Teddy,

Welcome.  I take Sprycel, so not much help with the Gleevec, but I am not surprised Trey mentioned the water idea.  It seems for some people Gleevec tends to cause serious and sometimes uncontrollable side effects of the bowel if taken with high amounts of water or juice.  Hats off to you that it is working, and you are doing well!  I have a similar problem with the Sprycel that others have with the Gleevec, except to get the pill down I stay away from liquid for a few hours after taking my pill.  On occasion, especially since it is getting warmer here I have forgotten my time frame and ingested water ( apple juice alone would send my system into overload and it would revolt)  because I was mowing or working outside.  Within a few hours I am brutally reminded of my error, and it is not a pretty event.

[TeddyB]

pammartin: Hehe, well i guess we all have to find the thing that works the best for us. Looking forward to getting 100mg pills though

[pamsouth]

REGARDING ;  "Antilocigal: Apperantly its ok to dissolve it in water or apple juice using a spoon to stir the contents. (Says so on the Glivec pamphlet, and ive also read this several other places"  having established it is Ok to dissolve Gleevec in water.  Why the warning not to crush.  I mean if you crush you are naturally going to dissolve it in something.

PamSouth

[Cliffee]

Hi Teddy,

Sorry to hear about your CML. I'm 44 and was diagnosed last July. I have been on Gleevac 400 since then also.

Luckily side effects haven't been an issue. At first I had some fatigue and mild leg cramps. Both went away in a few weeks. No itching or rashes. I just started to get some light cramps in my hands and feet every now and then.

I would say just hang in there. Things will get better and you will start to forget about it and just take a pill a day. We are all lucky to have these miracle drugs in this day and age.

Cheers

[TeddyB]

Cliffee: Indeed we are lucky with these drugs, i guess what all the newcomers are asking themselves are: "But will they work for me?"

I know, cause i ask myself that question every day now. I guess after i had such a good first response to them at the 2 week checkup(WBC way down+spleen reduction), i should be optimistic, and i`m trying, but its not always easy :/

I had a big spleen on dx, almost down to my belly button, and that fact has been bothering me ALOT after reading about this being a higher risk factor, but now after almost 4 weeks on gleevec, i can bearly feel my spleen anymore, except sometimes at night, then it feels like its "working". If i try really hard to find it when i lay in different positions, i can feel it during the daytime, but its definatly shrunk a lot so im hoping this is a good sign as well,  and the fact that i was dx in chronic phase and that the Dr was very optimistic of my blood work and said it was a classic example of CML.

(Trying to convince myself here )

Anyway, i am so glad to see there is such a great community where people with CML, who can share experiences and just talk, it realy helps me alot to see what other people are saying, and how they are doing just fine.

[Cliffee]

Teddy,

Funny, I still ask myself will it work for me and I'm 10 months out. I don't think that thought will go away for a few years but it will diminish.

Good thing is statistically, the odds are greatly in our favor! We also now have 2nd line and third line drugs coming which are proving to be even more effective than Gleevac if needed.

Another thing thing to always remember is the last resort transplant option if all else fails. From what I read it is VERY rare to have to go this route but it is still an option. The advances they have made and are making with it are remarkable. You are also very young so that's in your corner as well. I think you will do fine.

[CallMeLucky]

TeddyB - take some time to read this article about Dr. Druker and Gleevec.  There is a story about one of his first Gleevec trial patients LaDonna Lopossa who went to Druker on her death bed, spleen the size of a football when Gleevec trial was just starting.  It's an amazing story.

http://www.smithsoni...nst-Cancer.html

[TeddyB]

Thank you guys, ill try to keep my head up