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Planning for the future.

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#1 JoshLee



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Posted 13 June 2011 - 01:24 PM

Hi All,

      I've posted before, but it's usually just about medical stuff. How do you plan for the future when everything seems so uncertain? I just started treatment a little over 4 months ago and I am doing fine I guess. FISH showed 22% BCR-ABL after about 3.5 months so that is encouraging, but I just find it really hard to let myself think happy thoughts about the future. I just have a hard time getting over the fact that my health is going to be "Up in the Air" for the rest of my life. Even if I get to PCRU, who knows what's going to happen next? I guess life is just a little more complicated than I had planned it to be at 27. Most days I feel good and try to do everything I can to "stay in the moment" but other days when I am working to secure a good future for myself, I end up wondering if it's ever going to pay off. I am so thankful for the hope we have with the TKI's, but the future just seems SO uncertain. I realize that everyone has to deal with these issues at some point, but I just feel like my "mortality bubble" was popped a little too early.      What has brought some of you to a sense of peace and solidity while living with this disease? Especially dealing with all of the questions and doubts that come up in the first year that you were diagnosed. Thanks for your time and advice! -Josh

#2 Susan61


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Posted 13 June 2011 - 01:37 PM

Hi Josh:  First let me say that my peace comes from my faith in the Lord, that its all in his hands not mine.  The other thing you have to think about is that TKI's did not exist when I was diagnosed in 1998.  I did not get a TKI until 2000 when Gleevec was discovered.  I did the old fashioned treatments that were available at my diagnosis.  You have to think that every year they are finding something new to treat CML better.  Gleevec was the only drug at first, then came the Tasigna, Sprycel, and their are other clinical trials that are proving to be successful.

     I can understand your so young, and therefore thinking all these things.  Try to think that you might be the one to see the cure with all the research they are doing.  Now that they know what causes the CML, they are working hard to find a way to get to the root of the cancer cell to be able to destroy it completely.

     I will be Living With CML for 13 years this coming Christmas.  I have posted this before.   I was diagnosed on Christmas which made my holiday horrible.

I thought it would be my last Christmas with my family, and now I have counted my  years by every Christmas that I get to celebrate.

    It seems like you are doing very well with your treatment.  Live each day, and Thank God when you see the next day come.  I have been doing that now for over 12 years.

    I know someone who has had CML for over 30 years, and never reached PCRU.  Everyone is different.  I will keep you in my prayers.


#3 CallMeLucky


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Posted 13 June 2011 - 02:05 PM

It seems to me that time in general has a lot to do with it.  I find that the longer things go the way I want them to (disease wise) the less bleak the future seems.  Yes your bubble has been burst and it sucks it happened so early for you.  I'm about 10 years older then you so I can somewhat relate, but I recognize there is a big difference between 27 and 38.

I find that the older I get the more I see that bad stuff happens.  There is lots of good stuff, and there is lots of bad stuff too.  I know of two people at my job who died tragically in the last year since I have been diagnosed.  One was around your age, had lung cancer (non-smoker), newly married with a little baby.  He made it about 6 months past his diagnosis.  Another guy in his early 40's, married, young kids, went to sleep, had an aneurysm and died.

So now that I've depressed you even more, let's try to take away something from these horrible stories.  The reality is that life is full of uncertainty and we do not know when our time will come to an end.  Most people don't think about this, especially younger people.  Young people live life without giving much thought to when they are going to die.  They plan for the future as if the future is somehow guaranteed.  They defer things with the belief that tomorrow is another day to get it done.  You don't have that bliss anymore, but the reality is that your outcome in the long run compared with someone else in the general population may not be that different.  The studies show that if you respond well to TKI drugs you can expect a "normal life span".  So far the TKI drugs do not appear to cause any secondary health issues.  The longer you do well, the better your odds get that you are going to survive.  I want you to think about that for a minute.  We tend to have this thought process after we are diagnosed that the clock is somehow ticking down on us.  It is actually the opposite.  The longer you survive with the disease, the better your odds for overall survival.

So the real challenge for you is to figure out how to reconcile this challenge in your life with the things you want to do.  Is it possible the side effects are going to play in role in your life and potentially impact your ability to do some things?  Yes, but there is a good chance they won't and even if they do there are things you can do to work around them and still have a productive life.  We have men on this board who have fathered healthy children while on Gleevec, so that is not off the table for you.

It's really hard to know how things are going to turn out, unless you have a working crystal ball (I'd like to borrow it if you do) and since you don't know anymore than you really knew before you were diagnosed, then you have to just live your life.  CML for most is not a terminal disease, it is a chronic condition.  It sucks, but lots of people have health issues in their life that challenge them.

As crazy as this sounds to some people (and I hope I don't offend anyone by saying this) in my mind sometimes I try to rationalize it by telling myself CML is a second chance disease.  I could have gotten lung cancer and died in 6 mo or went to sleep and never woke up, like the two guys I worked with.  I didn't die, I got a second chance.  My second chance has challenges associated with it, but I'm alive and there is a good chance I am going to continue to live with this disease for a long time.  Whenever I start to think about how lousy my future is, I think about those guys I worked with and I realize that my future doesn't look all that bad, mostly because I have a future.  So I try to live my life to the fullest that I can and appreciate it as much as I can.  Some days I feel like crap and I'm not as optimistic and then other days I feel pretty good and I am really happy and grateful to be alive.

I wish I had a simple answer for you but I'm still trying to figure it out myself.  Each day is a new opportunity to figure it out a little more, and that in itself is a gift.  If I can leave you with one last parting thought it would be to try and imagine yourself 30 years from now looking back at the past 30 years of your life.  How do you want to remember those years?  As someone who sat around waiting for their ultimate demise or someone who made the most of each and every day?

I wish you well and hope you find peace with your situation......

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%


#4 JoshLee



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Posted 13 June 2011 - 02:16 PM

Thanks to the both of you. Great thoughts and I really appreciate them! Some days just seem to be more challenging than others and today has been more challenging. I do understand the "Second Chance" concept. I sometimes think about the things I used to get upset at and the things I used to let get to me. It's much easier to let things roll off my mind than it was before. I've learned a lot about myself since I was diagnosed on 12/23/10 (Merry Christmas) and I am so grateful for that. It's nice to read these posts and try to put things in perspective. The future is guaranteed for noone....

#5 cometbro


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Posted 13 June 2011 - 03:20 PM

Hey Josh, I know how you feel.  There are good days where you kind of forget you have CML and there are bad days (right now) where you wake up and realize you are living with this and its not going anywhere any time soon.

I just try to distract my mind and try to do all the normal things.  That is the best way I find to clear my mind.

#6 janner25


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Posted 13 June 2011 - 08:52 PM

Lucky - yet again - your words are right on!

JoshLee - I too am about 10 years older than you (just turned 37 in May)...about 4 months after diagnosis I remember coming on this board an absolutely mess...a ranting mess.  I was so upset and discouraged - even though all my counts were all good, I went through some denial (I went for a 2nd opinion - could I really have it - my WBC counts at dx were low - only 28K - even though I had a PCR showing positive, I had no BMB at diagnosis, etc.)...4 months in I was so exhausted physically and mentally.  Felt fine before diagnosis and all of a sudden my world was shattered with 2 young kids and the word leukemia.  This board brought me back to reality and hope!

Here I am, almost 8 months in.  Mentally I am a completely different person.  There are even days when I don't think about CML (which is sometimes not good either - because I may forget my evening tasigna...I know, I know - bad me but I have admitted it to the dr .).  Physically, I have some good days and days where I'm just spent and barely have energy for anything.  So I take the good and the bad, and look at my life as MY life - not my CML life.

I truly believe time is the wonderful gift we received as we all live with CML.  Time to reflect on our life - and our future - because we have TKIs.  So give yourself time - being 27 and getting this news with the word leukemia is scary....being on medicine our whole lives is also just as scary.  Also to Susan's point - we may benefit because we are young.

Good luck - and know we're all here for you if you need it!


#7 jenz


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Posted 13 June 2011 - 09:13 PM


I can relate to your post tremendously as I am the same exact age as you.  I was dx November of last year and quickly started Gleevec and engrossed my self in CML as if it was a college class to fully get a grip on my new found friend.  I would say it consumed my everyday life for those first few months while I was learning and accepting my new future.  By about Janurary after I had learned a lot I began the side effect game of, everyday I feel a little different.  Gleevec has a long list of side effects like all TKI's do and I quickly became consumed with the list of them.  Everyday wondering what I was going to feel and experience and somedays even running to the doctor to confirm I didn't have an adverse side effect.  In all cases I was fine and just becoming a hypocondiract to say the least.  So you could say the first 4 months of this disease I was shocked, dismayed, and consumed by CML.

Then by the 5th month I joined a golf league that mets once a week and I began to love and enjoy this night.  It was the night I was my oldself, normal, and no one needed to know of my medical condition.  This experience made me realize that CML has been defining my life and it should not.  To say it bluntly I needed to take the "bull by the horns".  Every since I started that league my life has been different, I am back to my old routines and I could not be happier.  I keep telling myself that live in the moment.  I could spend all day looking up various side effects or thinking about what if I need a transplant but then remind myself two things.. 1.) TKI is keeping my CML at bay  2.) TKI is decreasing my leukemic cells which puts me back into prespective of what I am today.

I work hard and have made a goof life for myself.  Up until finding out about the CML I worked a lot, and played a lot.  I have a great family and friends but now I see my focus is directed a little differently now that I have CML.  I focus more on my family, friends and the NOW that my work.  Work is always there and is important to pay for medical, bills etc.. but it should not be the focal point of my life.  I also think a lot about getting married and what if it comes time to have kids.  As a women I know you should not be on the TKI's and get preganant.  Or if I met someone and fall in love how do you tell them "hey, nice to meet you I have cancer".  I think god has a plan for all of us and its what you do on this CML journey is what matters the most.

I think you have to continue to monitor your disease but not everyday. You need to live your life as normal as possible.  I know some days it is easier said than done.  But I keep telling myself to stay present in THIS moment and worry about the future later. 

We should talk sometime I feel connected to you because we are both so young with this disease.  Feel free to email me if you'd like jenzcml@gmail.com or do you have IM client?


#8 lthouse612


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Posted 13 June 2011 - 11:11 PM

Hey there Josh... I was taken aback when I saw your dx date as I was dx on the same date in 2006.  Small world we live in isn't it?  I'm 38 now (just had my b-day in May) and I find looking back it seems surreal with all that has happened not to mention what "may" still happen.  I've been there too as most of us have in thinking what now, how will this change everything? and how will I handle it from here? Heck I can't imagine anyone not thinking that in here..... anyway I have a family and my 2 boys are still very young (6 & 9)... as far as I'm concerned, I want to be around for as long as possible and experience as much of life as possible. 

I had a plan for the future... but then CML "happened" and it took so much from me I actually think I subconsciously blocked it all out up until this last couple of years.  I fell into a depression that I wasn't even aware of...  It took quite a bit of counseling to understand what the heck was going on and I finally came to the realization that things needed to change and I couldn't allow this disease to "take" anything more from me.

Basically to make a very long story short... I have tried my best to live as normal a life as possible and ignore CML to whatever degree I need to in order to do just that.  This approach may not be for everyone but it's worked for me.  Now, its not like I don't acknowledge that I have it or don't keep taking my med's or go in for my follow-ups, it's just that I have had enough of it controlling what it already has in my life and I don't care for it to take away anything more that I would have had otherwise done or enjoyed if I were still healthy.  Does that make any sense?  Anyway, I just rather try to keep on enjoying as much as possible.  I can't really say I have definite plans for the future (other than the obvious) but I can say that from day to day I will continue to do as much as I can tolerate and have as much enjoyment as possible from my family or what ever it may be that was enjoyable before my having CML.  Frankly it just ticks me off sometimes to think that I have to give in to it on days I'm not feeling well and am forced to sit and rest.  I don't think anyone would care for that.  I just want to have the choice... that's all. 

So, that being said... I still ride take part in my hobbies (motorcycling is my passion) as much as I can and I even try to look for new ones (such as recently taking up kayaking) so that I can have other choices to fall back on.  Live and have fun doing it... no regrets... and memories will always be something we can take where ever we go... Good luck to you!


#9 jjg


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Posted 13 June 2011 - 11:55 PM

I was dx 2 days before you 21/12/10 but 10 years older. Still I feel young in that we have not had children and now with me being the baby factory that is going to be hard (but not impossible).

The mortality thing was front and centre at dx because my Dad was diagnosed with terminal lung cancer a month before and died 5 weeks after my dx. He had a very complete faith and was entirely ready. Me on the other hand....I didn't have a clue and was entirely unprepared. I was very close to my Dad and had watched him embrace his mortality for most of my life. Early in my life I'd watched my Nanna do the same. I'd always assumed I would have time to grow into it and maybe CML is a wake up call to start growing. With the blessing of the rest of my family I didn't ever tell my Dad about my CML. We just helped him with his journey. He never knew but in the final week he showed me so much.

It is hard to plan for the future but having CML can help motivate us to find the really important stuff. I struggle with the doubts of mortality but have decided now is a good time for that struggle, even though it seems early. I think it is ok to struggle.

I also actively plan for the future. I think it is very reasonable for us to have goals and dreams. The odds are good.

Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017

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