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Finally on Gleevek


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#1 lindacarriere

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Posted 28 May 2012 - 03:20 AM

Well, my husband is finally on Gleevek.  I posted a while back that we were waiting for his test results and they came in. The Oncologist told us he is in advanced stage-borderline Chronic.  I think I read this somewhere before, but I just can't get my head wrapped around it.  I guess I am too much of a black or white type person.  Anyone ever hear of this before?

  The Onc has started him on 400mg and we go back in a month.  So far, the only side effects he has faced is the first day he had a short bout of dizziness and has random muscle spasms in high left hand.  Other than that, nothing.  I know....we are VERY lucky.  He has stopped losing weight and although is still slower than his usual self, he seems to be much better.  His WBC was back up to 51,000 last week after getting down to 38,000 when he was on the initial dose of Hydro.  His WBC was 236,000 at dx.

Really anxious to see if the Gleevek works.  It kind of scares me that he has little side effects.  I worry that the medication isn't working.  I guess we just have to wait, like all of you did (and do).  His FISH came back with 91% Leukemic cells.  I am waiting for the archiving department to send me a copy of the test so I can see the full results. 

Thanks for any input



#2 TeddyB

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Posted 28 May 2012 - 06:47 AM

Hey. I didnt have many side effects the first weeks either, they started showing at around 3 weeks into treatment. I had some minor leg pains and some fatigue the first 2 weeks, but they went away pretty fast. After 3 weeks however, i did get a rash witch was not any fun, but luckely it went away after a few weeks.

Anyway, the G was working very well for me even with little side effects, my wbc went from 270k to 77k after 2 weeks, and then down to 5,4 in a little over 4 weeks, and my spleen reduced in size

(I wasnt put on Hydro at all)

After the 3 first weeks i had as i mentioned, some rash, some mild nausea, some minor leg pain, some minor fatigue, one blood shed eye, but nothing major.

Now, after 6 weeks of G, i dont have any side effects that bother me much. I might get tired and maybe some fatigue with a sprinkle of nausea, but the last few days i havent realy noticed anything at all. Ginger helped with the nausea for me, and i just rest a bit when getting fatigued.

So, having little side effects doesnt mean the drugs dont work

I hope G will work just as well for your husband, and i wish you all the best.



#3 LivingWellWithCML

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Posted 28 May 2012 - 06:54 AM

Lack of side effects doesn't mean that Gleevec isn't working.  I am over a year into 400mg of G and I have limited side effects...if any.  My Fish went from 98% to 5% in three months, so he has a real shot of responding well while managing side effects.  I get a little bit of edema under my eyes (pretty common), and I fight the fatigue through rigorous exercise.  All of the other issues I have had on treatment I am now attributing to anxiety rather than Gleevec itself. :)


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#4 TeddyB

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Posted 28 May 2012 - 07:09 AM

Exactly Dan, anxiety is definately a contributing factor for me as well, im hoping with time, it will decrease.

Its good to have these forums, where one can talk to other people who are going through the same issues, it really helps me allot.

Not many people with CML here in Norway, only 20-30 diagnosed each year, so not many other Norwegians to share experiences with.

Luckily, i went to an american school for a few years when i was 6 years old so my English is fairly good compared to the average Norwegian so i can understand what you are all saying



#5 LivingWellWithCML

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Posted 28 May 2012 - 07:56 AM

Cool, it's good to have you on here - and your English is great.  I had some client work in Oslo for a while, but I haven't had the opportunity to travel there (yet).  But it's on the list!

I'm working pretty hard to figure out the whole mind/body thing right now, because I believe it can definitely help enhance TKI treatment by naturally reducing anxiety.  Yes, we need TKIs and we're fortunate to have them (I tell myself that every single morning when I down the pill with breakfast), so now it's time to do more ... control what you can control.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#6 Trey

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Posted 28 May 2012 - 12:48 PM

The issue of diagnosing CML Phase is inexact.  Ask the Onc to tell you specifically why he believes it is "Late Chronic" Phase, and be sure to get a copy of the BMB report.  The WBC alone does not tell you anything.  Get copies of all test reports. 

Side effects come from issues other than fighting the CML.  He will probably have some soon enough, but if not, he will be very fortunate.






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