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#1 mlk210

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Posted 11 January 2015 - 10:03 PM

I need a little encouragement that I most likely will not die from CML. I'm 5 months in and so far so good, but I'm petrified that if the CML doesn't do me in, the Sprycel will. I was cleaning out my closet today, organizing my kids (6 year old twins) keepsakes. It's just hard wondering if I'll be around to share them with them as they get older and have kids of their own.

 

I tell myself no one's future is promised, but somedays I need more.

 

Could you tell me how long you've had CML and what medicine you're on?

 

5 months

100mg Sprycel


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#2 lanadal

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Posted 11 January 2015 - 10:16 PM

On 400 mg Gleevec and have been taking it for 12 years in March. My Oncologist always said "something else might kill me, but not CML". (He has a dry sense of humor.)

 


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.


#3 gerry

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Posted 11 January 2015 - 11:51 PM

Diagnosed Jun 2010 - 400mg Gleevec. PCRU Nov 2011, after a year dropped to 300mg Gleevec. Stopped TKI Nov 2013,



#4 Billie Murawski

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Posted 12 January 2015 - 12:18 AM

Hi  Mlk,

  Sounds like you're having a bad day. It drives you crazy doesn't it, one day you can feel like ok I can deal with it, all the other people on the board are doing ok, some of them have had it for years.Then the next day you feel terrorized and every ache or pain makes you think oh my God it's the cancer, or a side-effect from the tki, or I'll never see my children grow up, or who will take care of my family when I'm gone?

 It doesn't help much when we all say we have all been through what you are going through,you are probably thinking how can we know what you're feeling or thinking, but we do.

 What you're going through is perfectly normal I was dx aug 2007, for months every morning I woke up and said to myself hi I'm Billie and I have cancer! And of course the medicine made me so sick at first 400mg Gleevac a day. I had no support I never found this board until 2010. The cancer center just told me I have leukemia but it's the most treatable kind, and if I have to get cancer I'm lucky it"s cml and all I have to do is take a pill a day and I'll live forever(which I really don't want to do 80 is good enough for me I figure by then I'll be wearing diapers full time and eating baby food, and farting all the time) just like I do now! I was told there is this miracle medicine called Gleevac,pa referred to it as the silver bullet. She was right Gleevac went right through me like a silver bullet, I already had stomache issues so G just wasn't right for me but I had to take it for 3 years because Sprycel and Tasigna were just coming out.

The week after my dx I went to my onc and told him how sick I was, and he said it was just my nerves and I should listen to classical music. I like some classical musical and trust me it does nothing for Gleevac sharts. This man gouged my bone(bmb,bma) no anesthetic, gave me medicine that made me have stuff coming out of every orifice of my body,is telling me to listen to classical music.He was my onc for 3 weeks.

 I really trust my onc I have now,

I started out on 400mg. Gleevac for 3 years, I don't know when I was pcr nobody really told me anything. But after 3 years on G the PA told me I was all zeros,she was smiling so I figured I did something right. I never heard the terms pcr pcru mmr etc. Once I started understanding a couple things I decided I don't want to know, I just throw myself into panic mode the numbers fluctuate so much which is perfectly normal for everybody else, and I still don't understand how many logs I dropped, we have a fireplace so I drop a lot!

Bottom line my dx aug 2007,went on 400mg. Gleecac until Oct. 2010, took a 6 week break from G then started on 100mg Sprycel after 2 years went down to 50mg. S I became anemic, a year and a half ago down to 20mg Sprycel still undetectable. I get bw every month. My biggest complaint is fatigue but I am on other meds too. Brain fog is real I never know if I'm coming or going and I'm always doing stupid stuff now I have something to blame it on ( I accidentally got wd 40 on a bedroom window how can I get it off in 8 degree weather before Ron sees it Better yet how do I explain to him how it got there in the first place?)      

 You will come to accept it, and it won't be so scary, and you'll still be around when you have grandchildren. I am, 2 precious grandsons.

                                                               Take Care Billie



#5 rcase13

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Posted 12 January 2015 - 06:28 AM

3 months, 600mg Tasigna. No idea what my FISH or PCR is. Still waiting on result. The waiting is going to kill me I think. All I think about is this damn test, is the drug working is in not working. Argh!

I had a terrible childhood now have a family of my own. Son is only twelve. All I want is to live long enough to see him marry and have a family of his own. Is 12 too early to marry and have kids! :)

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#6 hannibellemo

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Posted 12 January 2015 - 06:51 AM

It's 5:45 a.m. and I've already laughed today, way to go rcase! It will get better and you won't stress out so much about testing.

 

I'm going on 6 years. I started on 400mg Gleevec and developed liver toxicity 9 months in. Switched to Sprycel 100mg. and reached MMR within 8 months. 2.5 years in developed pleural effusion and after a lengthy break reduced dosage to 50mg. Regained MMR and holding.

 

I'm considering asking doc in a couple of weeks to up my dose to 70mg. depending on what my PCR says. I've hovering in the .05 to point .02 IS range. Just curious if it would make a difference in PCRU or not.

 

Good luck!


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>


#7 klf2013

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Posted 12 January 2015 - 09:37 AM

MLK,

As Billie so cleverly said, what you are feeling is totally normal....I was diagnosed exactly a year ago and had the same thoughts. In fact I still do. THis forum is such a relief for me. I have a great supportive husband, but unless you are living with CML, it is impossible to understand the "slap" moments. That is what I call them.  I can be doing the most mundane thing...washing dishes...and then SLAP! OH Crap I have cancer!!!

The trick is learning to LIVE with this. My oncologist said the same thing as Billie's. "you are lucky...you got the good cancer!" :blink: He also thinks Sprycel side effects are nothing. When I told him about the fatigue he told me to go to the gym. :huh:  HMMMM!

Hang in there, the people on this site are with you and understand all those moments of shear terror!



#8 dede5

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Posted 12 January 2015 - 11:54 AM

klf, your description is right on with the "slap" moments. I've had those all along, but would like to tell all of you who are just beginning, those moments are a lot less frequent than they used to be after 4 years, at least for me. I'm thinking they don't hit quite as hard now either.


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


#9 klf2013

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Posted 12 January 2015 - 12:09 PM

klf, your description is right on with the "slap" moments. I've had those all along, but would like to tell all of you who are just beginning, those moments are a lot less frequent than they used to be after 4 years, at least for me. I'm thinking they don't hit quite as hard now either.

I am hoping to get "slap happy"! :D



#10 August1

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Posted 12 January 2015 - 01:40 PM

Hi,

I was diagnosed about 2 1/2 years ago. I started on Gleevac and have been taking 100 mg Sprycel for the last 18 months. I went through a lot of the same feelings that you're feeling now. I still feel that way many times. A diagnosis such as this definitely changes your perspective pretty rapidly, but these feelings are normal. I can remember wondering if I should even buy new clothes and organizing my possessions in case I wasn't going to be around in the near future. Although it's not always easy I will say it gets a lot better once you start gaining more confidence in the treatment and you see your numbers improve. The treatments for this disease are very good so be confident that will come. 



#11 tinman1939

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Posted 12 January 2015 - 02:17 PM

Diagnosed in November 2006. So, I am still kicking more than eight years later.

Current TKI:  Ponatinib (Iclusig) - 30mg/day

Former TKI:  Gleevec (6+ years)  400 mg/day



#12 mlk210

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Posted 12 January 2015 - 07:54 PM

Thank you to everyone that's responded. There are good days and bad so far. Days when I forget I have CML until the alarm on my phone goes off to take the pill, whereas before I was always glancing at the clock to see if it was time. Then there are days when I'm putting my kids to bed and I shut the door and cry.

 

It helps hearing everyone's stories!! Thank you :)  


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#13 clford

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Posted 13 January 2015 - 10:35 AM

It will be three years July 2nd that i have had CML. Hang in there I believe your emotions and attitude really play a roll in how your mind accepts and deals with the disease. Side effects can be overwhelming at times, nausea, rash, dry skin, vision problems, hair loss, fatigue. I take 600 mg of Tasigna a day. I have come a long way from 3 years ago, i ended up in the hospital, bled quite often, had no energy, and at times could barely walk. In reading all of the postings i would say we all have similar side effects. I think with any medicene you have side effects, you do learn how to deal with them so it works for you. Having CML has really made me a stronger person, and has made me look at life differently, each day is a blessing, nothing is taken for granite. I live each day to its fullest, let my family know i am doing fine, love them all, and do not think of 5 or 10 years up the road. Its true your world stopped the day you found out you had CML but you do learn how to educate yourself about the disease and move on and enjoy life feeling better than you would if you did not have the treatment they do have today for CML :)



#14 LAC1223

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Posted 13 January 2015 - 11:04 AM

Everyone's story is so unique, yet at the same time there is a thread in the story that makes you think 'omg, that is exactly how it was for me or exactly how I feel'.  This forum is a god send, I am not on it always, but it gives me peace of mind that I have someplace to go to ask folks going through the same CML journey questions or just vent if I need to.

 

I was diagnosed July of 2011 - been on 100 mg of Sprycel since I was diagnosed.  I achieved PCRU within 6 months, but my Hematologist doesn't want to take me off the med/dosage that worked... he doesn't really feel that the side effects I am having are from the Sprycel anyways.  My WBC was elevated at my last CBC, so I go back on Thursday to be checked again - think it was because I was sick.

 

Good Days, Bad Days - I so look forward to the good days and am so thankful to family, friends and this forum on the bad days. I remember the first time that I broke down after I was diagnosed, it was two days after and I got a card from a well meaning  friend saying, Thinking of You which I thought was very sweet. But then inside she wrote - 'I can't even imagine how it feels to hear you have cancer, hang in there' ,,, ;-( That was the first time I had it called what it was - that was my 'slap'.   



#15 CallMeLucky

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Posted 13 January 2015 - 11:42 PM

I get where you're coming from.
4.5 years post dx
Did Gleevec for 2 years and Sprycel for 2.5. Bounce in and out of PCRu on both, side effects are more tolerable on Sprycel.
I've come across a bunch of people with cml who have been at this way longer than me.
It's not fun but you will likely be around for a long while.

Hope you feel more at peace over time.
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%
 

 


#16 Pin

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Posted 13 January 2015 - 11:53 PM

3.5 years for me - Gleevec 400mg. Have bounced up and back down again, currently sitting at < 0.01 and have been for a while.

Constantly convinced everything is something, even when it isn't. Unfortunately lately, some things have been 'something', so having a bit of trouble now, but things will hopefully settle down again sometime soon...


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#17 Billie Murawski

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Posted 14 January 2015 - 12:09 AM

I get where you're coming from.
4.5 years post dx
Did Gleevec for 2 years and Sprycel for 2.5. Bounce in and out of PCRu on both, side effects are more tolerable on Sprycel.
I've come across a bunch of people with cml who have been at this way longer than me.
It's not fun but you will likely be around for a long while.

Hope you feel more at peace over time.

Hey Lucky how the heck are you? It took me 8 months to get back on the board with this new software.Last time I talked to you was when you were going on vacation. Did it help you to relax a bit, I hope so. I suppose you read my first post about Ron, yeah he was really sick, after 2 years of doctors telling me he had polycythemia (but they have it under control and he was depressed) he collapsed dec 1 and for 30 days I was told he might not make it. But thank God he's better than he has been for over 2 years so it's all downhill now.

How are you feeling? Still traveling a lot, I wouldn't like that. It's one more nice thing about being retired. I am freezing my arse off If it doesn't warm up soon I'm gonna take my bottle of wine go to bed get under my electric blanket and stay there until May. Or until I have to go to the bathroom,whichever comes first.                                    Billie



#18 carrie

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Posted 14 January 2015 - 12:29 PM

Eight years on Gleevec.

400 mostly. Tried 500 and then 600 for awhile to get my numbers lower.

I don't think I will die from CML.

It gets better after you have been on the medicine awhile.

Most days I don't even think about having leukemia.

I have twins. They were 16 when I was diagnosed. They are 24 now.

My how time flies.

We are lucky our leukemia has oral medication that keeps us alive.

I am grateful for that.

Carrie


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#19 JPD

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Posted 17 January 2015 - 01:15 PM

Dx 11-2013

 

PCR currently at .50

 

600mg Tasigna


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%


#20 snowbear

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Posted 17 January 2015 - 02:05 PM

I'm a newbie too.  I was just diagnosed in November, 2014 but have probably had CML for a few years.

 

PCR at diagnosis 22.5

 

 

I've been on Gleevec 400 mg for just 2 weeks now and my WBC has completely normalized !!!  I don't see my Onc until February and I'm not sure if she will test me for presence of the Ph+ chromosome or PCR yet, but I'm making fantastic progress!!  

 

At Christmas, I could barely stand up long enough to make a batch of cookies without getting short of breath.  Now, I can run up 4 flights of stairs without a problem.  






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