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#1 eithne01

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Posted 03 April 2012 - 04:51 AM

Hi everyone

I have been on Glivec 400mg since diagnosis two and a half years ago.  I have never got remission and for the last

six months I have been having worse side effects than usual. Mainly I cannot walk properly.  My consultant changed me to tasigna

yesterday and I feel lost at sea.  has anybody changed from Glivec to tasigna and what are the side effects you have actually encountered?

Does anybody know if hairloss is one of the side effects as I don't think I can cope with it.  I'm not being vain I just feel like eveyone else

on here, been through enough.  I'm afraid my consultant didn't give me the chance to ask these questions and my google searches are

pretty much showing the same side effects as Glivec. I will be on 300mg of Tasigna twice a day which is frightening in itself.

Thanks in advance everyone.



#2 B4tehpwn

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Posted 03 April 2012 - 07:19 AM

I've only been on Tasigna for 3 weeks since my diagnosis.  My oncologist says hair loss can happen, but is often rare.  Rashing and water retention are the most common side affects that I'm aware of, I've been lucky only to experience the water retention so far.  Wish I could offer more insight into switching from Glivec.



#3 td1961

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Posted 03 April 2012 - 11:21 AM

Hi there! I too have been on tasigna about three weeks. Haven't really noticed anything more than the usual in the hair department. I have the normal amount of sailors jumping ship everyday, no more or less than normal! I have unusually thick hair permed into a medium brown afro so maybe the texture helps disguise the open fields underneath, who knows? But my hairdresser seems happy and hasn't said anything to worry about so it must be okay. If I were you, I'd go ahead and try it first before I start making rash judgements about it. Maybe you won't even have this problem? Like Cheryl, my problem is with water retention and I take extra HCT along with my HBP meds for that. The only other side effects I've noticed so far has been bone and joint pain and a little fatigue. So, maybe it won't be as bad as you think? Maybe try starting off with only half the dose and work your way up to the full dose over a month or so? I'm taking 450 mg / day which I take first thing in the morning to reduce the side effects since tasigna has such a long half life compared to sprycel, the drug I just vacated. In the end, I think you'll find that tasigna has many less side effects than gleevec and I ought to know since I suffered through six years of high dose (800 mg/day) gleevec use!

Regards,

Tracy



#4 KerriD

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Posted 03 April 2012 - 02:38 PM

I have been on tasigna since DX in August 2011 and my tests have shown that the disease in undectable in my blood for the last 4 months.  I take 300mg 2X a day and the side effects have not been bad.  In the beginning I had some tummy issues but that subsided about 10 weeks into it.  I have had some itchy skin but Clartin helps that as well.  I have had hairloss too but not all my hair.  It is just thinner than it was and the bonus is I havent had to shave my legs for months.  I still work full  time and I am a single mom of 2 boys, ages 10& 12. I get tired easier than I used to but basically live a very normal life.



#5 Lizzybee

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Posted 03 April 2012 - 04:46 PM

I've been on Tasigna since July 2011.  I had some nausea the first couple days, then it went away.  I have mild rashes that come and go.  At about 4 months (I think), I had some pretty severe upper abdominal pain and had to have an ultrasound to rule out organ involvement. It is a known, less common side effect between 3-6 months, and it went away after 2-3 weeks. My hair thinned out for awhile, but not enough that it was obvious to other people.  My eyebrows got really thin and the few that were left were growing in wild directions, but they have filled back in. A little hairspray kept them in line.   I was really itchy for several months, but it eventually faded.  The scalp was the worst.  I use tea tree conditioner from Trader Joe's and that helped some.  It you get dry, itchy skin, use a heavy lotion such as Eucerin or Lubriderm.  If it gets too bad, you can use some hydrocortisone cream.



#6 pamsouth

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Posted 03 April 2012 - 06:42 PM

Hi Eithne01

eithne01 wrote:

Hi everyone

I have been on Glivec 400mg since diagnosis two and a half years ago.  I have never got remission and for the last

six months I have been having worse side effects than usual. Mainly I cannot walk properly.  My consultant changed me to tasigna

yesterday and I feel lost at sea.  has anybody changed from Glivec to tasigna and what are the side effects you have actually encountered?

Does anybody know if hairloss is one of the side effects as I don't think I can cope with it.  I'm not being vain I just feel like eveyone else

on here, been through enough.  I'm afraid my consultant didn't give me the chance to ask these questions and my google searches are

pretty much showing the same side effects as Glivec. I will be on 300mg of Tasigna twice a day which is frightening in itself.

Thanks in advance everyone.

I was diagnosed with CML July 29th 2005 at the age of 57 years. I have been on Hydrea for 1 month for high platelets & Gleevec since Oct 2005. 

My Labs for FISH stay between 92% normal and 100 % normal or undetectable, even though they may find a few fusions or signals, sometimes the lab will still say 100 % normal or still say undetectable. For a few years my PCR were undetectable until the lab changed their metric system over to the International scale. There lab results were questionable.

I went to another doctor where they do their own labs and interpret them. 

I was only positive for the P210, which I think is great after 6 years of Gleevec, no other mutations.

P190 BCR_ABL Not Detected!

FISH was at 1.5% (3 ph+ cells in 200).   200 nuclei were examined 3 nuclei demonstrated 2 fusions signals.  No cells demonstrated loss of the ASS gene probe.

THE NOMENCLATURE IS WRITTEN AS:  

          nuc ish 9q34(ASSX2,ABL1X3),22Q11.2(BCRX3)(BCR CON ABL1X2)3/200)

PCR was 7.623 for the b2a2 & the b3a2 BCR/ABL fusion gene. The test is compliatnt with the updated international (IS). I am not sure how many cell they studied the test result read;

     7.623%      %IS     (<==100,000)

I can't compare the result with the other out of state lab.  So I don't really have a base line yet.

However noncompliant these results might be the national guidelines. I am really happy with the last results,  I think only 3 ph+ out of 200 is terrific. As you can test a dozen different drops of blood and get a dozen different results, plus I always consider a 5% margin of error.  As far as the PCR well, others would say that is bad, but I look at it differently!!  I am not sure but I believe that PCR have a large range of error.  Also even if I was undetectable I could still have a million PH+ and the Ancient CML mother stem cell is still at large, so the TKI never really get to her or the root cause of curing or wiping out CML.

Looking at even a bigger picture is to consider are all my other labs:

COMPREHENSIVE METABOLIC are all normal except the,

GRF MDRD IS 58L  range is >59.       GFR Cockroft-Gault Est 51 is Low range is >=59.

Two cardiologist have told me in the past it would be better if I could quit taking the diuretic or take is every other day, as it causes kidney failure. However if I don't take them my hands swell up and I can barely use them it has been that was long before CML.  Like I started taking a diuretic back in 1997.

HEMOGRAM & Auto differential are all norma, Except for a couple that are boderline or off my a fractionl!

I know there are the some who would want to move on to another drug.  But when I consider all of the labs, I what I have been thru to adjust to the toxic side effect of gleevec over a 6 1/2 year period.

Not only that but even if you have a PCRU the person still has approximately 1 million leukemic cells in the body. The theory being if you can eradicate them will the ancient mother cml stem cell exhaust herself or die.

Well I read another article that people who had use interferon and TKI might have a chance of that.

Also read where there is a study or theory that HDACI might eliminate CML stem celss and also taking TKI to eradicate the PH+ BCR/ABL.

The thread i took some of  this info from are:

http://www.sciencene...1712000025.html

http://community.lls...e/137876#137876

www.community.lls.org/message137866#137866

I think if I were newly diagnosed I would try the Tasigna, but since I have been on Gleevec I happy to stay in a range, as long as my other labs are good and I am tolerating the drug, as apposed to traveling down uncharted territory and who knows.  I am 64 years old and adjusting to meds is difficult for me physically and it is also stressful.  I know that in the beginning of Gleevec my life was consumed with Cancer, and doctors, and labs, hospitals, and sickness.  So for me I am happy to stay where I am, not saying that wouldn't change, but that is how I feel today!!

I am sorry to take up so much of your thread I think I will start a post of my own, with my new first time labs from Indiana University.

PamSouth


PamSouth


#7 Melanie

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Posted 04 April 2012 - 09:23 PM

I've been on all 3 TKI drugs and am now on my second try of Tasigna, which I've liked the best because it has the least side effects for me. First time around I suffered a bad rash/sore on my chin that I still have a scar from and lost about 1/2 the thickness in my hair as well as some bone pain and cramps in my feet, but I felt pretty good. The bone pain and cramps were probably more from the CML. It's been about 6 months since I was on it last, and I've been on it for 2 weeks now with very little side effects. This time we started at 1/2 dose of 300 mg and am increasing to 450 mg next week, since labs are good. In the past it seems we always started at full dose and then backed down as needed or stopped completely.  In my case, it seems to work better if we start slow and build up, giving my system a chance to adjust to the drugs slowly.  My intolerance has always been my WBC and ANC tanking to dangererous levels so we are also using neupogen shots to control my ANC levels. So far, so good. My hair is growing back with some interesting new body.   Melanie


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#8 eithne01

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Posted 05 April 2012 - 01:19 AM

Hi eveyone,

thank you so much for all the replies.  At least I feel less worried after reading your replies. 

I think it's all about having to start all over with a second TKI.  I really appreciate all your help.



#9 Mr._Bill

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Posted 05 April 2012 - 06:01 PM

I took Gleevec for about 1 month, and had to be switched to Tasigna (300mg. 2x per day), due to severe side effects I had on Gleevec.

I have been on Tasigna for about 2 months now, and have very few mild side effects. Just on a 2 week break from it now due to the fact

that it has lowered WBC and Platelets to below normal range, nothing major.

Hope You have good results with Your new meds.






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