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Why aren't I dancing in the streets?

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#1 MJB


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Posted 18 February 2011 - 10:14 AM

I quess I am writing this partly as a question and partly just to vent. I hope you'll bear with me! No one likes to listen to a whiner and I intend to do a little whinning! Remeber I warned you!

The good news is that 20 months post diagnosis and 6 months after switching to Tasigna I have reached a 3 log reduction! Yeah!!

How come my mind says "yippie" but my emotions just aren't celebrating? In fact, I am a little depressed for the first time. Some of the side effects are annoying but I am adapting. To be honest I am a little scared by my lack of memory and ability to focus. I am having difficulty being decisive and articulate at work, both requirements of my position and ones that I used to do effortlessly. I am often dizzy, tired and my eyes burn so bad some days that all I want to do is keep them closed. Reading and writing are also job requirements and my favorite hobbies.  I know..whine, whine, whine..

I know I am lucky to have such a great response to tasigna. I know that I will keep going to work and doing all that I do cause I have to.

I don't look like anything is wrong so nothing can be wrong, right??!!

Have any of you felt this way?

Thank you for listening!!


#2 CallMeLucky


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Posted 18 February 2011 - 11:40 AM

First congratulations on the MMR, that is great!

I get how you feel, I feel that way a lot.  Then I feel guilty for not being happy about the treatment options I have.  I always berate myself about how much worse it could be and how someone with an untreatable form of cancer would do anything to have the treatment options I do, not just an effective treatment, but multiple options!  Still, we feel the way we feel and some days we just don't feel great.  Regardless of how we are doing, I think very few of us would say we are 100%.  Something has been taken away from us and we are altered copies of who we once were.  We ache, we're tired, and we have other random annoying and uncomfortable things that have changed who we were.  So it's hard, but we have to do our best to adapt.  We have to accept what has happened to us.  We don't curl up in a ball and accept defeat, we just have to accept that something has happened and we are different now.  We have to put more work into feeling ok.  Try to look into some alternative treatments to help with your side effects.  Perhaps do some research on dry eyes and see what you can do to help, from drops to maybe some other things.  There is no easy answer, and I don't know if I even have much in the way of advice other than acceptance.  Accept this has happened to you, accept that things are going to be differnt, but most importantly, accept that you are doing well on treatment.  Start from there and chart a new course.

I hope you continue to do well on treatment and find ways to deal with the other things that bother you.  All the best...

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%


#3 MJB


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Posted 18 February 2011 - 12:09 PM

Thank you Lucky! Your understanding and wisdom brought tears to my eyes and helped.

Thank you again, my friend!

#4 PhilB


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Posted 18 February 2011 - 02:16 PM

So we need to make you cry to help your dry eyes?  Okay, I'm just off to search the net for suitable tragic stories.  Would you prefer puppies or kittens?


And yes I do know exactly how you feel

#5 Susan61


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Posted 18 February 2011 - 07:00 PM

You vent all you want and whine or whatever makes you feel good at the time.  I have been venting and whining since I was diagnosed in 1998, and then I stop and say to myself that I am so blessed to still be here to whine and vent.  The lack of memory or as we call it Chemo Brain is a real issue for me.  I will be talking to someone, and completely forget what I was saying.  Then it comes back to me.  I get frustrated with all the other side effects, but now I am dealing with other health issues.  Now my CML is actually on the back burner as I say, and not even significant at this point.  I thought I was in terrible pain with Arthritis in my legs which I have had for years in my  legs, neck, back, etc.  I go to the doctor, and get put in the hospital to be told I have a huge blood clot that is in the entire right leg.

So now besides the Gleevec and its side effects, I am on Coumadin which has its side effects too.

Take one day at a time, and if you can still get out to work everyday that is an accomplishment also.  I could not work anymore, and I wish I could.

When I get really down and frustrated, I just stop to think about where would I be if I did not have the choices available to me that other cancers do not give.

When the doctor told me I had the good kind of Leukemia, I thought he was nuts. How could any Leukemia be  good thing.  I guess its good for me being I just started year #13 since diagnosis.That is why we are all on the boards here, so we can vent and release our emotions and get answers to help us deal with whatever is bothering us.

Take Care.  Your Doing Good!!!


#6 cyclejoy


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Posted 18 February 2011 - 09:30 PM

Re: Dry eyes,  I have been on sprycel for nearly 3 wks and dx in late Jan. 2011. The first side effect I noticed was dry eyes...In fact, the back of my eyelids felt like sandpaper. Well, I just started drinking more water and also used the lubrication eye drops and this is now just background noise. I think it is so  normal to feel like your body has highjacked you, and yes, whining is ok. But when you do think, really realize that 15 years ago we'd all have  a real death sentence of 3 -5 years and that it really is miraculous that we do have these drugs particularly considering that the CML monster is a low incidence disease - incredible. Do whine and cry, I think it moves your emotions outside of you which is good. Take care and love to know if water and drops do help your eyes!

#7 everonward


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Posted 19 February 2011 - 03:50 AM


My side effects are not as bad as yours but I do understand so whine away. As for looking likes nothings wrong so nothing can be wrong - so true even family forget and think you are capable of more than the fatigue will allow. I can function as normal but I need to be allowed to pick the day today feels as if it will be a good day (it's nearly 9am here in the uk) which means a quiet day tomorrow I suspect.

As for memory issues - I make a LOT of lists and notes and keep a very precise diary.

#8 MJB


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Posted 19 February 2011 - 12:08 PM

Thank you everyone for your replies and reminding me that there is a whole community of folks out there that really do understand! My family, co-workers and friends really don't want to hear any fears or concerns because they don't want to have any fears or concerns so I keep quiet.

Susan - I am so sorry to hear about your bloodclot. You are an incredible person, reaching out to comfort me while going through such a painful thing yourself. Thank you, you inspire me.

Cyclejoy - good tip about water and drops. I think I drink enough H2O but I probably don't so I'll up the quanity and let you know. Eye drops don't work.

Everonward - Thank you!

Phil B - sad stories as a perscription for dry eyes! Brillant!! You could market your services, with a choice of either puppies or kittens and those of us afflicted could subscrbe! What a great money maker!!

Thank you once again, my friends. Today is starting with a smile because of you all!


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