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Newly diagnosed, starting Gleevec next week, any advice?


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#21 MargieAD

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Posted 11 September 2012 - 09:33 AM

Thank you Cliffee

I will keep reminding myself of your post and your experience.

It is very encouraging. It helps to know that there are some people

out there who have had very little - to zero side effects.

I will do my best to stay positive and not become discouraged.

As Dr. Gore (John's Hopkins) told me..."it is a good time to have CML!"

Not that there is a "good time" but in looking back...treatment has

come a long way - and I definitely get the impression that positive

things are on the horizon for all of us!



#22 MargieAD

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Posted 11 September 2012 - 09:38 AM

Thank you Susan61,

I am glad I found this site, so very glad, and really

appreciate the knowledge that everyone has. It helps

to be able to ask questions, it really does.

I am starting to think that day 1 might be fairly uneventful

that almost sounds like I will be disappointed (LOL)...what

I mean is...it seems like if something is going to happen

it might take a few days for it to build up in my system.

I am just hoping that if anything GI related happens it

will wait until I get home from work! Let's see.

I think I will most likely transition to dinner. Day one will

be lunch (tomorrow) in case I need to call the Dr. for anything.

I too have reflux issues - kind of a bummer having that going into this,

but good to know that Nexium helped. I take Ranitidine now.

thank you again, I will be sure to post how it goes.

It's just difficult to wrap my mind around this - when I feel fine (which

is good) but hard to believe I have something wrong...very surreal.



#23 MargieAD

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Posted 11 September 2012 - 09:43 AM

Traci,

Your post is very encouraging - you have a lot

going on, and it seems that despite your diagnosis, and

the Gleevec you are still able to keep up with work, and

children, etc. That is very positive. Thank you!

I have been very fortunate all my life health wise, but

as a result I think I have a low threshold for pain, so

it will be "interesting" to see how things play out

if I experience muscle cramps/bone pain.

Everyone's replies have been great, it is a huge blessing

to hear first hand reports, and "meet" people in the same boat!

Margie



#24 Rissa

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Posted 11 September 2012 - 09:50 AM

I met with Dr. Pratz at Hopkins last year.  I wanted to continue going there but didn't think traveling to Baltimore for my appointments was practical.  Nice people. 



#25 MargieAD

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Posted 11 September 2012 - 11:51 AM

I had a good experience there as well.

I will only go back if things seem un-manageable

locally (I am 1 hour and 1/2 away from Baltimore.)



#26 MargieAD

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Posted 11 September 2012 - 11:53 AM

I should ask also, are there any supplements that I should be taking as

I begin this Gleevec journey?

I take 1500 D3 a day (I had a pretty significant D deficiency) and a daily Flintstone chewable

Is there something else that will help?



#27 Rissa

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Posted 11 September 2012 - 12:10 PM

Takes me about 45 minutes.  I'm in the Annapolis area.



#28 CallMeLucky

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Posted 11 September 2012 - 01:31 PM

When first starting out, it is probably best to hold off on supplements.  This will allow you to eliminate any confusion if there are questions about response or side effects.  Once things get going and you know what you are dealing with, then you can introduce certain supplements as needed.  You will always want to let your onc know what you are taking.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#29 MargieAD

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Posted 12 September 2012 - 11:33 AM

Thank you!

That makes perfect sense, not to introduce

anything else new in the beginning.

Pill one in approx. 1 hour!!!

In my mind I have already taken it a thousand times.

Thanks again



#30 Rissa

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Posted 12 September 2012 - 12:01 PM

Don't forget to eat!  Also, I find it beneficial to keep my pills in a days of the week pill box.  At some point you might experience a little brain fog and you could forget whether or not you've taken your pill.  That happens to me all the time.  I can forget a minute after I've taken it. 



#31 MargieAD

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Posted 13 September 2012 - 12:43 PM

Hello Rissa

I had Kraft Mac & Cheese from a box...and a hot dog. I ate like I was 5 years old again...loved it.

I had zero GI issues from the med. on pill one. Did a lot of praying and self talk before I allowed

pill one to be swallowed. I hope I can be a little more brave with pill #2 at dinner tonight.

I did have what I believe was an anxiety/panic issue about 15 min. after taking it...

I got hot...and my heart was racing, but I sat down and cooled out, it passed very quickly.

Had it stayed I have visions of me calling 911.

I tell you...this whole thing really drives home the importance and necessity of "one day at a time!"
I am learning the hard way!



#32 Rissa

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Posted 13 September 2012 - 02:23 PM

Yes indeed......one day at a time.  



#33 Tess

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Posted 13 September 2012 - 02:26 PM

Very smart Margaret for not listening to your family doctor and pushing for that referral.  When I was diagnosed it was by accident too and  my doctor refered me right away and my white blood count was pretty low, my onc said i was lucky she referred me.  I have been on 400mg of gleevec since 2006.  When I first started the pill I had some bone pain and cramps in my feet and calves.  I have been nauseous only a few times and thats because I didnt eat a big enough meal, so now I make sure I eat enough and I have no problems ( i usually eat half my meal then take my pill and then eat the rest of meal).  Sometimes I get itchy, and a cramp now and then and some puffiness around the eyes but these symptoms come and go.  Im sorry you have cml but at least there are medications that control it and Im sure you will do fine on gleevec.  Good luck!!



#34 Rickysuperdad

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Posted 18 September 2012 - 09:26 AM

Hey, new here too.  Dx 2009 at age 41 with 320,000 wbc.  Been on G the whole time.  Nausiated once during the first couple of weeks......I don't know all of the terms others use on here, but mine isn't detected anymore in the blood test.  My only advice is not to read old and outdated info on the internet as i did.  Thought that i was going to die any day.......then i learned that i am on a God sent drug.......I live a normal life except when i think negatively......Now,,,,i plan on being here a while :-)



#35 Tess

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Posted 18 September 2012 - 12:26 PM

Hi Rickysuperdad - you are so right about the internet - that was my big mistake when i was diagnosed in 2006.  I was so scared reading all the outdated info and thought i was going to die until my onc educated me about gleevec and its great success.



#36 Susan61

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Posted 18 September 2012 - 04:07 PM

Hi:  I was just curious when you said you would be taking your second pill with dinner.  How many MG are you on?

For instance I am on 400mg tablets.  You usually just take the one every day with a meal. Some people are splitting their pills in half so as not to have a strong reaction to 400mg all at once, and doing 200mg twice a day.

Some people get the 100mg. tablets.  Then some are on a higher dose of 600 or 800mg. Hope your doing well with not too many or maybe no side effects.

Susan



#37 MargieAD

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Posted 20 September 2012 - 09:59 AM

Hello Susan

I should clarify that by 2nd pill I meant day #2. Day one I took it at lunch and day two forward I have been taking it at dinner time.

I am on 400 mg. So far I haven't had too many side effects. 2 instances of intestinal issues - but nothing since. Slight nausea maybe twice? Slightly puffy around the eyes in the a.m. - but it is allergy season for me too...so that could be it as well. I did have a panic attack day one right after taking the pill at lunch time, but it passed in approx 10 min, so I am certain it was not the Gleevec. I am not 100% sure that the nausea wasn't from my nerves as well. I have been pretty apprehensive about taking this drug. But really, so far I can't complain - and I sincerely hope this trend continues. One thing - I do have two unexplained bruises.... I just had my week 1 CBC done the other day. I found out that results are at my dr's office...but my dr. is off until next week (figures, right???) They said another dr. would look at them, but if I dont hear back today, I am going to call to make sure someone looks at them. I have to wonder if maybe my platelets are low?  Anyone else bruise with Gleevec?

I sincerely do not recall any injuries...one is on my lower abdomen... the only thing I can think is maybe it came from sitting with my I-pod in my pocket??? But normally that would not cause me to bruise.



#38 cousineg

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Posted 20 September 2012 - 11:38 AM

Hi Margaret,

 

If you've just been diagnosed, I suggest you to meet the nurse Carolyn Blasdel .

I suppose that you love painting. Take a break of reading medical topics and go to that link: CMLer's portofolio

 

But If you like more music, then go to:

                The march toward healing

                Too muchangels in heaven!

                The battle for healing

                 Dia international de la LMC (Spanish music)

 

Welcome to the group,

                                   Gilles



#39 MargieAD

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Posted 23 October 2013 - 12:46 PM

Hello to all!

I am embarrassed to say that this is my first post since starting Gleevec last September.

Things have gone well - despite the occassional digestive issues and fatigue. I am guessing the

fatigue is due in part to being anemic (result from taking the Gleevec.)

In April my BCR - was at 0 - I was thrilled about this since I hadn't even been on the Gleeved (400 mg) for a full year

In July BCR was again at 0

In October however..it came back at 0.058

My dr. reached out to his contact at Johns Hopkins and relayed to me that he feels it is not a big deal -

but within the margin of error for this test (I hope I quoted him correctly there.) To me it is disappointing...although I will try not to worry about it until I am tested again in January.

Has anyone else had this happen...? Going along with wonderful results...and then a little bit of a hiccup so to speak?

Thoughts?

Thank you in advance,

Margaret



#40 GerryL

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Posted 23 October 2013 - 06:50 PM

Hi Margaret,

1. Sometimes the results can be incorrect as something has happened during the testing stage. 2. Some labs change the measuring results over to the IS standard, which can mean your results show an increase. 3. In some cases your PCR level can bounce around a little bit. 4. And sometimes things can go wrong and the PCR results can start to go upwards. But for the last one to be true it needs to be an upward trend, so you would need to get another test to see if there is a trend occurring. On the plus side there are also a few other TKIs available to move to.






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