The Leukemia & Lymphoma Society - Fighting Blood Cancers
41 Replies Latest reply: Jun 2, 2012 11:45 AM by TeddyB RSS

36 years old, diagnosed with CML 3.5 weeks ago.

TeddyB Registered Users
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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.

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    tiouki Registered Users
    Currently Being Moderated

    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

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    Jack Registered Users
    Currently Being Moderated

    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

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    Susan61 Registered Users
    Currently Being Moderated

    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

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    0vercast Registered Users
    Currently Being Moderated

    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.

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    TeddyB Registered Users
    Currently Being Moderated

    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

    • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
      Mr._Bill Registered Users
      Currently Being Moderated

      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.

    • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
      GerryL Registered Users
      Currently Being Moderated

      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.

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    Trey Registered Users
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    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. 

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    pamsouth Registered Users
    Currently Being Moderated

    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

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    Antilogical Registered Users
    Currently Being Moderated

    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.

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    TeddyB Registered Users
    Currently Being Moderated

    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

    • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
      pamsouth Registered Users
      Currently Being Moderated

      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

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    pammartin Registered Users
    Currently Being Moderated

    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.

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    TeddyB Registered Users
    Currently Being Moderated

    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

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    Cliffee Registered Users
    Currently Being Moderated

    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

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    TeddyB Registered Users
    Currently Being Moderated

    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.

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    TeddyB Registered Users
    Currently Being Moderated

    Had a checkup today, 4.5 weeks after starting Gleevec treatment.

     

    WBC at 5.4 (Down from 77 2.5 weeks ago)

    Hemoglobin 12 (Up from 11,4 2.5 weeks ago)

    Platlets normal

    Spleen reduced in size, almost normal, was allowed to start exercising.

     

    Happy about the results, Onc was very pleased as well.

    Thanks guys for all the support so far, still a long way to go, but every victory counts

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    TeddyB Registered Users
    Currently Being Moderated

    Anyone experience weight issues on G?

     

    Before DX, my normal weight was around 78kg, and now im down to 71kg, been there since DX about 1.5 months ago.

    I am eating alot, 3-5 times a day, and i dont watch what i eat at the moment, i dont do much exercise yet, but i try to walk at least 30minutes pr day.

    Im hoping to gain some weight, but so far havent been able to do so. Does the Gleevec take a lot of time for the body to get used to regarding weight?

    • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
      GerryL Registered Users
      Currently Being Moderated

      Hi TeddyB,

      Not sure if it is the Gleevec - I've remained at the same weight since starting Gleevec, even though I watch what I eat and have increased my exercise routine. When I asked my doc he said it is probably the fluid retention playing a part. Others have found they have put on weight.

      Stress is possibly the issue for you with your weights loss, if you're still eating the same amount of calories.

    • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
      Ray99 Registered Users
      Currently Being Moderated

      TeddyB,

       

          I lost about 2.5kg the first week after starting Tasigna.  My Dr. thought it could be due to enlarged spleen that made me felt full and actually ate less.  He also suggested that it could be due to stress and anxiety.  I started eating high calorie food, like pasta and ice cream.  After two weeks, I gained back the lost weight and remain steady in weight.

         As GerryL suggested, it probably not the fault of TKI.

       

      Ray

    • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
      Tedsey Registered Users
      Currently Being Moderated

      Dear Teddy,

       

      Pre dx, I had lost around 9kg and couldn't gain any weight.  I looked like a skeleton and was questioned by doctors and family if I had an eating disorder (crazy, because that is why I sought help for 3 years trying to find out what was wrong with me---blame the victim, go figure...).  After dx, Gleevec, and a switch to another TKI, it took me about 2 years to gain back the weight I lost.  I think with the body fighting so hard to maintain homeostasis with the abundance of WBC and enlarged spleen (if I remember your case right), it is not easy to keep weight on.  After your body heals on the TKI, you should be able to gain weight.  Now I have to watch that I don't get fat!  Good luck and good health.

       

      Tedsey

    • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
      CML_in_ATL Registered Users
      Currently Being Moderated

      Hey,

       

      I don't exactly know why, but I lost 26 pounds over the first 4.5 months of Gleevec 400mg and cannot put a pound back on.  I changed some aspects of my diet after diagnosis, but it's not like I was eating burgers every day before diagnosis either. :). I am 6ft1in, so I am now a quite thin 152lb..almost my high school weight!.  I get comments all the time from folks (whoa man, you need to put some meat on them bones!), but I can't seem to do it.  I do exercise rigorously, which I am sure is a factor.  My theory is that G has induced some real metabolism change, and I appear to be very healthy since I am responding to treatment....so I don't worry about it anymore and just do some upper body weights to tone as best as I can.  As long as we don't continue to lose weight, I think that's the key.  Once I leveled off, I calmed down...I was definitely concerned over those first few months.

       

      Hope that helps -

  • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
    TeddyB Registered Users
    Currently Being Moderated

    Thanks for sharing your weight experiences guys, it really helps a lot knowing its not unusual to be in my position.

     

    Stress/anxiety might definitely be a factor as i am still quite stressed out. (Starting to cope a bit better now though)

    Dan, your about the same size as me then, i am 6ft and 156-157lb. Speaking of burgers, i had burger for lunch and burger for dinner on Tuesday

     

    Glad to hear most of you have put on weight again after some time, ill try not to worry so much about weight and see what happens once the body settles down.

     

    Think ill have a big steak for dinner today, with a nice glass of red wine, that will give the body something to work with

    • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
      CML_in_ATL Registered Users
      Currently Being Moderated

      Hey Teddy,

       

      Yeah, we are about the same size!  One person on here reminded me that our height/weight ratio is in the normal range, so no reason to fret.   I didn't mention that - but I had some major anxiety over that first 4 - 5 months on G as well, so I'm sure that was a contributing factor.  And yes, a glass of red wine in the evening (I believe) is good for the mind, body, and the soul.  I've had 1 - 2 medium glasses of red wine nightly and it hasn't had a negative impact on my G response at all .... pretty thankful.  However, I did seriously reduce my red meat intake post-dx ... although I love a good steak, I've probably only had 3 over the first year of treatment.  Perhaps I need to take your lead, LOL

      • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
        TeddyB Registered Users
        Currently Being Moderated

        Wine is definitely good for the soul, at least when its only 1-2 glasses pr night

         

        As for red meat, i have been eating everything and anything lately, my appetite has actually grown since starting Gleevec.

        A regular day for me starts with 2 slices of bread with goats cheese, strawberry jam and Gleevec, then lunch around 12 or 1, either a baguette with ham and cheese or 2-3 slices of bread with ham and cheese, then dinner at around 5 witch is either fish, white meat or red meat (usualy with a big salad or cooked potatoes or rice), then evening meal wich is 2 slices of bread and a yogurt. I also try to sneak in some fruit from time to time, oh and some chocolate. I try to drink alot of water and sparkling water, but i also drink the occasional coca cola.

         

        As for taking my lead on the steak, i say go for it

    • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
      0vercast Registered Users
      Currently Being Moderated

      Without trying, I lost about 25 lbs after starting Gleevec, and then my weight pretty much plateaued at 205-210 (6'4").  I can't seem to gain a pound no matter what I do, and occasionally drop one or two.  I'm happy with my weight at the moment, so the issue is not a concern.  A little while back I tried a 10 day experiment where I was piling on the fat and calories, drinking whole milk, eating chocolate cheesecake, junk food, and spoonfuls of peanut butter daily, trying to double my recommended daily fat and calorie intake.  Gained maybe a pound, if that, and it give my a stomach ache.

      • Re: 36 years old, diagnosed with CML 3.5 weeks ago.
        TeddyB Registered Users
        Currently Being Moderated

        Its good to know im not alone in this.

        Seems the Gleevec wants me down a few more lbs, but i wont let it, at least not now.

        Seems like a lot of people actually gain weight on G, but i guess that it takes some time until the body settles down a bit more, at least in our case.

        I too can get a stomach ache when eating to much now, but i feel i have to sometimes, to keep the weight.

         

        My onc said i should start gaining weight after my body settles down, so all i can do is trust him on that

         

        PS: Going to my first party after DX tonight (nothing to wild, just a gathering with 10-12 friends and dinner), will be abit exiting to see how that go`s, i am bringing 1 bottle of wine, and i thought if i keep it to 3 glasses throughout the evening/night i should be fine, don`t want to shock my body to much during starting phase of the treatment. Also ill keep a drink of water close at hand all the time to keep hydrated, just to be safe. Hope all go`s well

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