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heavy question. ..but I'm too scared to research:(


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#1 Frogiegirl

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Posted 16 June 2015 - 11:10 AM

I'm hurting. I want to know how long I'm going to live with this lovely C.M.L.??? I feel out of control and the pressure of testing and results is taking its toll(as we all know) I'm tired of people saying "you look so good. ..your my hero". In my head I'm thinking what f'ing choice do I have dip shit! I'm scared to move out of this stuck in time bubble....what if i move forward and cml takes over? What if I don't and I'm 80 and forgot to live my life? ??. I feel like the last 2 years have been a blur. I seriously forgot how old I was. ..I'm stuck at diagnosis age. Sounds weird I know....please don't respond with mean things I really don't think I could handle it right now. I had my bcr-abl done yesterday and meet with my doc next Monday for results....why does this one feel so different? I'm assuming because I want pcru so bad:( I'm only sharing because I don't want to feel alone anymore. ..

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#2 Lucas

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Posted 16 June 2015 - 11:36 AM

Frogie girl, the sênior guy in a tki is living with CML for 17 years and there a lot more people who are living with CML since before the tki era. You have to put in your mind that you live with CML and not for CML. I know you have a great response and you will probably live a long life. Maybe in a near future we'll have some new treatments and even a cure. Good luck! You are not alone!

#3 Frogiegirl

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Posted 16 June 2015 - 11:45 AM

Thank you Lucas. ..I feel like I'm losing sight of the important things and need a slap back into reality. ..maybe a punch....I guess we all have to go one day...I just never thought I would be butting in line to get there first:(

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#4 tazdad08

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Posted 16 June 2015 - 01:30 PM

Hey "froggie girl"... I know the feeling. You question so many things in life. Why me, why this, what if, what if I done this instead, what did I miss,?????? I am going through a very very similar stage. I titled my post "marriage problems"... maybe it was more about "life problems" and my wife just happens to be the person that is most active with my life, or lack of life. The great thing about this community is that we are not alone. We dont have the drama and judging like on Facebook. You have my number.... you arent alone! My advice is do what makes you the happiest while doing the least (if any) damage to the ones that care about you. I havent done such a good job at that. I want to find happiness, and I have been damned and determined to do so! O, back to the question.... from what research I have done, we will live till its our time. The TKI's suck... well, the side effects do! But, its extremeley rare for any of the side effects to actually be fatal. Something else will get us.. not CML or the TKI's


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#5 Lucas

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Posted 16 June 2015 - 02:25 PM

you'll do great, frogiegirl. I also have those feelings sometimes. that i'm not living, that i'm scared, that my levels will be up next time, but i try to rationalize and put in my mind the most people here are doing good and living their lifes. Life is much more than cml. we have much more to have and give. if you want to talk, PM me.



#6 Gail's

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Posted 16 June 2015 - 02:30 PM

Frogiegirl, I think everyone on this board probably feels this way at times. I know I do. Then most days I have a better outlook but those tough days really stink! My onc told me I'll have a normal life expectancy and likely die of another cause. But I have to agree, this new cml life can really get me down. Hang in there, you'll feel better soon.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#7 kat73

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Posted 16 June 2015 - 06:17 PM

Frogiegirl - Everything we have to deal with in CML seems to be cyclical - the anxiety that builds before each and every PCR, side effects that wax and wane, and yes, emotional states.  Sometimes we feel pretty strong and grateful and lucky, maybe pretty happy over a good PCR.  This is always followed by bouts of doubt and fear for the future and general discouragement that this is all there is to life, and we still remember and pine for our old one.  Ha, the "new normal" - hideous phrase.  If I remember your other posts, you've been pretty plucky and keeping up with a physical, high energy job.  I think you've just hit a completely expected emotional slump.  You're tired - of trying hard, of fear of the unknowable - such a strain long-term, that one - and of the dissonance with the normal healthy world out there.  But this cycle also will pass and you will be better again.  I think you are going to get some good news on your PCR - and if you don't, you are going to be able to deal.  Nothing moves fast with CML and you have lots of options for recovering your good numbers, if you need to.  Maybe someone else will correct this, but I believe the official gold standard is still CCyR and MMR (which, as you know, is 0.1 % International Standard) and not PCRU (undetectable).  I believe that the experts think staying at MMR is enough to protect you for a normal lifespan.  We get a little caught up in the race to PCRU (I'm no exception) and from what my oncologist told me, some people never get there, yet they are doing as well as those who do and, so far, for as long.  Please - Trey - if I've got this wrong, chime in.

 

I felt like you when I was about at the year or two point after diagnosis.  All I could get from my then-oncologist and from the literature was a namby pamby mash-up of vague stuff alluding to "longer survival," and that we should all hail the miracle since in former times we'd be dead at 5-7 years.  Swell.  So, were we talking 8?  Blech, not good enough.  I was a mess.  Just so fixated on this rank unfairness.  Then on this forum I read about something Dr. Druker had said in a speech - 2009? - that he expected, on the drugs currently available (which were G, and S and T was just coming along) - he EXPECTED 30 years.  This was a watershed set of words for me.  Now I know from your picture that "30" is not a big enough number for restoration of the sun in your sky.  But, for you there is going to be something even better - you will see at least a functional cure in your lifetime.  My point is, you need something to hang on to right now - a word or phrase, or a story, preferably a FACT.  You're a little low on hope right now and you need a booster shot.  But it will come your way if you continue your search.  Wait for it and it will come to you. 

 

You are so right that time goes by so weirdly with us.  We're so involved in trying to understand what's happening to us (since it's all new to the scientists and medical world as well - "studies are ongoing") that we almost forget to live sometimes.  And then, you raise your head, and boom, it's two years gone, or in my case, six.  It's a blur of misery, mostly, and it seems like totally wasted, empty time.  But I believe it's not.  I think time has to go by in order to work through everything in your head - there are no shortcuts.  And, like when you are pondering a problem and you go to bed and sleep on it, and in the morning the answer seems pretty obvious, I think the time that feels empty to you actually has been spent working on the problem that is CML - how to live with it, through it, beyond it, in spite of it.  You're getting there.  You will figure it out for yourself. You will.

 

I, too, hate that trapped feeling - there is NOTHING we can do to rid ourselves of this diagnosis.  It happened and it is here.  We didn't cause it, we don't deserve it, we can't be sure that everything we are doing is enough.  We CAN'T be sure.  Trapped like a rat.  Or, as I like to put it, pinned like a worm to a board.  Wriggle away, it will avail you not.  Here we are.  Stuck. It simply takes time to get used to this.

 

At first, there's the energy for the fight and you want to learn all you can.  Next, hopefully for most of us, comes a little exhilaration as we see the numbers dropping.  Yay!  We're gonna take this sucker.  Then comes the plateau, or side effects change, or we get in some extra trouble.  We get discouraged.  And then, we get bored.  Bored of taking the pill and of bouncing around a PCR number that maddeningly goes up a little, down a little, meh - and we know that it isn't even reliable or statistically significant.  We begin to feel a little insignificant, too.  Oncologists don't seem to get exercised about any of our complaints.  Our friends and family sort of forget we're still sick.  We don't want pity, just understanding, as tazdad put it so well.  I believe it is at this boring and bored stage that I finally began to realize that I needed to stop wasting time and live my life according to what makes me happy.  I began to not care anymore that it didn't match what the world thought should make me happy.  Again, as tazdad said, "Do what makes you happiest while doing the least (if any) damage to the ones who care about you."  If you need a new CML project because things have gotten old, there it is.

 

I'll leave you with this:  I had a therapist who said once, "Generally, things usually work out OK."  Completely simplistic, banal, Hallmark pap.  And it cheered me up enormously.  I kept saying it to myself over and over as the months rolled on.  It became a belief system, a kind of faith.  Ridiculous.  Absolutely ludicrous.  But, there it is.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#8 Antilogical

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Posted 16 June 2015 - 07:26 PM

The answer is:  You will live with it as long as you live. 

 

Sometimes, life is overwhelming - for everyone.  When it starts to get to me, I count my blessings, and move on as best I can.

A friend was just diagnosed with ALS, and HE sent ME an inspiring message - what a gift.

 

Go for the gusto, FG!


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#9 lanadal

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Posted 16 June 2015 - 07:29 PM

Frogiegirl, I definitely hear you on this! I have had CML for twelve years.  Those first years are a blur!!! I've never quite reached PCRU but my "numbers" are so low that my doctor jokes that "something else will kill you". My CML doc said that after two years your chances of CML changing and having new mutations is very slim. Living in the land of "no choice" is weird and I am never sure if I want people around me to know and then I am faced with the "Leukemia lady" identity or to remain anonymous.  My side effects did get better after the first couple years.  I do need to accept that different side effects appear and reappear but they are milder and readily controlled... and I'm used to them. I do get tired, but I've learned to rest and take care of myself. I think you will go through phases, but I know that much of the time CML isn't the most important thing I'm thinking about. I live an active and involved life. Waiting for PCR results gets more normal and less anxiety producing. My advice is to be very compassionate to yourself and it sounds you have a long and good life ahead. Your CML will probably force you (like mine finally did) to learn to live with less anxiety.  Lots of love, hope, and good thoughts to you.  


My facts: 

Diagnosed 2003 and have taken Gleevec 400 mg until recently. I am now taking 200 mg and will go have PCR testing every three months to see if all stays relatively stable. Have bounced between PCRU, PCR "weak positive", and .005 ever since.  Had a brief rise in PCR in 2005 for which I added Interferon (Yuck!) for 6 months which sent me back to previous levels and left me with neuropathy.


#10 JPD

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Posted 16 June 2015 - 09:45 PM

Ive got my next check coming up in a couple weeks - hot on the heels of last test's uptick (.50 - .78).  

 

And its getting worse. 

 

I just repeat this mantra when shit gets heavy:

 

The meds are working

The cancer is dying

I will live to see a cure

 

another one I once read in someones signature - TAKE THE PILLS, LIVE YOUR LIFE.  It doesnt matter how badly we dont want CML, we have it.  That die is cast.  But I honestly dont think the CML will kill me - and I am a chronically depressed cynical nihlist with a bad attitude in general :angry: ... working on that, btw.

 

A good friend of mine (distance runner, much sunnier disposition, religous, strong-willed, loving hearted 46 year-old mother of 4)) got DX with stage 4 colon cancer the same month I got my DX (October '13).  She died in January.  She didnt get a miraculous drug that somehow konks out a certain protien (or whatever TKIs actually do).  We are actually blesssed!  Yeah, we got the Big C :( ... but we CAN live with it... and maybe someday be cured :)


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#11 Billie Murawski

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Posted 16 June 2015 - 10:06 PM

Well Put Everyone, I feel better.

Frogie, In August it will be 8 years for me since dx and 5 years pcru. I still get my ups and downs and I'll get on the board and vent and It sure does help. You are never alone in our family.



#12 dede5

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Posted 16 June 2015 - 10:10 PM

I feel like the last 2 years have been a blur. I seriously forgot how old I was. ..I'm stuck at diagnosis age. 

So many times on here it's like other people's thoughts came straight out of my head. I realized last year I was 2 years behind on my age, my anniversary, and my daughter's birthday. Lost so much precious time (4 years) of my grandkids' young lives. And for what? This despicable disease. I vowed to never again let it steal another minute of whatever time I do have. I agree with all the comments on here. I have told my daughter, who worries about everything, you can fret and worry and lose that precious time, but if you get to point B (whatever that is for each individual) and it's ok, you've wasted your life for nothing. It's ok to have a meltdown every now and then, goodness knows I do. Just don't move in and stay there. 


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#13 TeddyB

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Posted 17 June 2015 - 11:26 AM

I'm hurting. I want to know how long I'm going to live with this lovely C.M.L.??? I feel out of control and the pressure of testing and results is taking its toll(as we all know) I'm tired of people saying "you look so good. ..your my hero". In my head I'm thinking what f'ing choice do I have dip shit! I'm scared to move out of this stuck in time bubble....what if i move forward and cml takes over? What if I don't and I'm 80 and forgot to live my life? ??. I feel like the last 2 years have been a blur. I seriously forgot how old I was. ..I'm stuck at diagnosis age. Sounds weird I know....please don't respond with mean things I really don't think I could handle it right now. I had my bcr-abl done yesterday and meet with my doc next Monday for results....why does this one feel so different? I'm assuming because I want pcru so bad:( I'm only sharing because I don't want to feel alone anymore. ..

 

Your not alone. Many of us experience this, me included. I work part time now to have some left over energy for my kids, before CML i hadnt been a day sick in my life (other than the flue etc). Im hovering at a PCR around 0,01 and i really want to come down a bit more, but i cant complain as long as it stays there either. Many weird thoughts in my head since diagnosis, i am not the man i used to be, more depressed etc, BUT, i try to stay positive, and hope that in a few years time, lower dosage will be more mainstream and not just in trials, also there is the hope of a cure some day and that is something i will never stop to belive in.

 

Wish you all the best Frogiegirl, and as i said, you are not alone....



#14 hannibellemo

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Posted 17 June 2015 - 12:38 PM

Hi, fg! You're probably further along then you think you are! Do you remember a time when you were first diagnosed and the two weeks between having a CBC and metabolic panel practically threw you into a panic because you just knew your white blood count was going sky high (even though it wasn't)? Or, how about times when you felt a twinge in your left side and you just knew your spleen was starting to enlarge again (even though you had just left your doc's office and he'd palpated your spleen and couldn't feel it)?

 

I remember the first time they moved my appointment out 6-8 weeks and I had to call them at 4 weeks to see if I could come in for an "emergency" CBC? I did, everything was fine.

 

I prided myself on never forgetting my pill. My moment when I realized CML didn't rule my life anymore came when I went to take my pill one morning and realized yesterday's pill was still in the pillbox. And, now when I wake up in the morning and "OMG, I have cancer" is not the first thought I have.

 

Be gentle with yourself, what you are feeling is neither unusual nor permanent! No one can say for sure they will be alive tomorrow, not even those who don't have cancer. Don't give it any more power then it deserves. Take your medicine, take care of yourself, see your doctor, get your tests and don't forget to live your life!


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#15 jmoorhou

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Posted 17 June 2015 - 03:38 PM

FG:  just read everything  hannibellemo wrote and agree.  I read somewhere CML could be considered a blood disorder rather than cancer.  I too don't wake up in the morning anymore and think "I have leukemia" ... god I hate that word...

 

I'm on Gleevec and feel like the only side effect I have is puffy eyes.  I feel like this was a wakeup call.  I wasn't moving enough and not eating well enough, now I am.  

 

A somewhat brutal wake up call yes....but who knows this hyper vigilance about what you have may prevent a future cancer scare.

 
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#16 Dona_B

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Posted 17 June 2015 - 03:54 PM

Frogiegirl,

Maybe you can call your onc. nurse line and see if the results are in Friday? Maybe explain your stress and assure them you will still be in for appt.  My last BCR-ABL was several days later than recommended but the results were still available for my appointment. It can't hurt. 

 

I asked my onc last visit how his CML patients are faring overall and his response is similiar to Kat's and Lanadal's. He said they are all responding to treatment but if not, he would just try something different. It's just way bigger when it comes down to personally experiencing it. Don't know how people survive without the internet tying us together and faith.


DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17


#17 CallMeLucky

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Posted 17 June 2015 - 11:19 PM

I'm just about 5 years in and I remember being where you are. I won't say I don't feel that way anymore but every time another test result comes you feel a little different. They're never easy but after you keep accumulating them you start to get a little more secure. The reality is no one can tell, you how long you will live with cml because no one knows how long they will live, mortality and all. You're really not much different than anyone else, you've just had this trauma that disrupted your life and has forced you to contemplate your mortality at a young age.
Here's what we know given the current state of cml treatment, the majority of us will live a normal life span. We are likely to have our disease until the day we die, but unlikely our disease will be the cause of our death. One doctor told me that realistically given my age and the drugs I am taking I will probably wind up losing about 10 years off my life from this. I think no one knows and that makes us no different than anyone else. You already said it, what if you make it to 80 and didn't live your life? Don't do that no ones future is guaranteed, live your life and enjoy each moment to the fullest in spite of your condition.
Also please don't hang on PCRu, just be happy if you are below MMR.

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%
 

 


#18 Frogiegirl

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Posted 18 June 2015 - 07:37 AM

WOW! Just WOW! I am overwhelmed by all the responses and amazing shares all of you left in this post.  I know you didn't have to, and I am so greatful you all did. I am struggling....severely. I'm scared of myself and my quick decision temper right now. Your words of encouragement and sharing your stories really helped. I can find myself relating to everything that is being said. I try to talk to my mom and even my B.F but no one gets it. I wonder if its possible to suffer from P.T.S.D from this diagnosis. When I was first diagnosed I had just moved out of a 5th wheel trailer parked in my parents yard for 5 months while I watched my dream home being built. I scrimped and saved to give my two boys something I never had. two weeks after moving in and still struggling with exhaustion and black bruising I saw my doc for some blood work just assuming I was low on one of the many vitamins. got the call at 8p.m from the doc on call to come see him. Then he sent me to the E.R to have the blood work re-drawn to see if the lab messed up......Nope. The numbers came back even higher. He told me not to go to work the next day and wait for his call. He told me over the phone they were leaning toward CML( all I heard was those 3 letters) then he said Leukemia and I dropped to my knees and began dry heaving. I had so many plans, we were going to have our last little one.....and now everything is messed up. I know I am no different then anyone else who receives this diagnosis but I do feel like I am especially having a hard time dealing. I always consider myself an extremely hard headed go getter, I stand on my own two feet....could be why I stay doing such a physical job and refuse to give up. But I'll admit I am sick of being the strong one at the moment. I watched my mom lose my only brother in a car accident when I was 14 and he 17.... now she has a child with cancer. I have a lot of guilt for that. I just thought I would share a little more so you have an idea of where I am coming from. we all have stories and I don't like sounding like a whiny baby....I am going to pick a phrase and hang onto it for a while and see if that helps like so many of you do. I am thinking "BEGIN AGAIN".   Again thank you for all your kind words. I am going to print this topic and all the replies and re-read it when I start feeling poopy again :wub: 


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#19 Gail's

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Posted 18 June 2015 - 08:52 AM

Frogiegirl, I can't remember if you've found a cancer support group or a counselor. It's been such a help to me. I don't think a single one of your feelings is that unusual as you can tell from all our posts. But I can't begin to tell you what a lifeline my group has been. I can only go rarely now, but the initial help I got was priceless. I think your concern about PTSD is valid, and you should check it out with a professional. But more likely, you're experiencing intense emotions because this is a big thing to absorb and adjust to. I googled cancer support group and found a couple of groups in my area. Also try calling hospitals to see what they have. My mantra is, I am going to be ok.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#20 alexamay09

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Posted 18 June 2015 - 09:37 AM

FG you have been through a lot and your feelings are really understandable.  I guess its even worse when you are a young person with CML but its the same for everyone.  Be kind to yourself and know that you have every right to feel angry and fed up.  Keep the faith and keep going. 

 

Alex






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