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My brain needs an off switch


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#1 Rissa

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Posted 02 August 2011 - 09:36 PM

I don't like you CML.  You keep me up at night.  You make me cry.  Shoo, scram, vamoose, take a hike, just go away.  I don't want to think about you anymore.  It's mentally exhausting.......I really need some sleep.



#2 Pin

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Posted 02 August 2011 - 10:00 PM

I agree - Some days are better than others...

Rissa, are you new to this too? It's so hard to get used to. I hope you can get some sleep.


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


#3 Rissa

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Posted 02 August 2011 - 10:06 PM

Yes, still new.  Diagnosed 3 months ago.  Tonight is hard for some reason.  Sometimes I feel very fragile, sometimes I get angry, it's a roller coaster.  And I still find it hard to believe this is happening to me.  I used to think my life was charmed, now I just wonder what the heck happened.  When were you diagnosed?



#4 Pin

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Posted 02 August 2011 - 10:24 PM

That all sounds so very familiar. I was diagnosed almost 2 months ago. I've heard these feelings get better/easier with time, but it feels like for now there are just so many things to worry about!


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


#5 Rissa

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Posted 02 August 2011 - 10:30 PM

Well I'm glad we have these message boards to vent, cry, laugh, share...  I'm going to try and get some sleep now.  Take care Pin.



#6 Rissa

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Posted 02 August 2011 - 10:31 PM

And thanks for listening.  :)



#7 Pin

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Posted 02 August 2011 - 11:01 PM

No problem


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


#8 GerryL

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Posted 02 August 2011 - 11:21 PM

Hi Pin,

I found I stopped spinning about the six month mark - you still get occasions when you think "why me" but they don't occur all that often. After a year and the TKI is doing its thing, things start to settle down for most people.

Gerry



#9 everonward

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Posted 03 August 2011 - 02:46 AM

Rissa and Pin

I can remember the early days of my CML - back in October 2005. I cried, I worried, I slept when I wanted to be awake and was awake when I should have been sleeping. I held it together for my family. Today I have come to terms with it. I am on Glivec (400mg) with very few side effects and the ones I have are bearable. Life is not the same and probably never will be. I tire far more quickly for a start and still have what I call my CML days. These are days, usually around hospital visits and PCR result waiting that I rant quietly that 'it's not fair and why me'. Then I remember that nearly 6 years ago I was told that without Glivec I wouldn't be typing this now or seeing my eldest go off to university and I breathe, relax and silently thank Dr Drukker et.al.

It will get easier, the boards are a wonderful place for help and support. Try and relax - easier said then done - but it will be ok.



#10 momruns

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Posted 03 August 2011 - 06:25 PM

Rissa,

I felt that way just about each 2 weeks or so since diag. in Feb 2011,  since I found this site just a few weeks ago, I feel much better knowing that what I post is being shared with people that understand what I am saying.  My family and friends are very very supportive but it is hard to explain why some days I am just plain sad.  I am so grateful for this group and also I have an appointment with my onc. on Friday with my main blood work (last time was 5 months age) so we will have an idea of how my efforts have been.

Loreta



#11 Guest_billronm_*

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Posted 03 August 2011 - 08:52 PM

Dear Rissa,

      Welcome to the group of best friends you'll ever have. Just sorry we have to meet this way. I have had cml 4 years tomorrow (whoopee). I think for about 6 mos after dx every morning my first thought was my name is Billie and I have cancer. I never found this site until last November. God I sure wish I had found it sooner. I was so scared nobody understands how we feel and we look so healthy. But I'm

thankful they don't understand that would mean they have it too. But a Bottle of white wine occasionally or a box of bon bons wouldn't hurt. Thanks to this group I'm starting to come to terms with this disease. We joke around a lot and this is not a gloom and doom site. But if you're having a hard time just jump in anytime we have all been there and are still going through it so you can vent all you have to and we'll all be there for you. It's amazing how this group can make you feel so much better in just a short amount of time. As far as side effects go nothing is off limits and there are so many good suggestions on how to handle them. But some remedys are strange did you ever hear of monkey butt for hemmoroids?

                                                                                          Stick with us we'll help you through this. I tell everyone there is no dumb question just dumb people.

                                                                                               Sincerely Billie



#12 Rissa

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Posted 04 August 2011 - 11:16 AM

Thank you all so much.  It means a lot to me.  I'm doing much better today.  Listening to "Son of a Preacher Man" by Dusty Springfield and I'm going to the beach for vacation this Saturday.  So I've got a little bop in my step and I'm sure the ocean breeze will help to adjust my attitude.  I'm so thankful for this website.



#13 scuba

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Posted 04 August 2011 - 11:43 AM

Rissa - How are your levels doing?  Are you counts going down (PCR/FISH) now that you are at the 3 month mark?

How are you feeling physically? (what drug do you take).


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#14 Susan61

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Posted 04 August 2011 - 12:43 PM

Hi Rissa:  Sorry I missed your original message. First of all your feelings are the most normal feelings you could have.  We have all gone through it.  First is when your told you have CML, and then its the concern over how will you handle it.  I promise it gets better.  You are so newly diagnosed that its so overwhelming right now.  You asked when some were diagnosed.  I was diagosed in 1998, so you see you can LIVE WITH CML!!!  I have been undetected for CML now for 8 years through my PCR Blood Testing.  I have to say I would like to find that OFF Switch as you put it.  Very good way of explaining how our brains just go non-stop with worry and trying to figure out the things that happen to us.  I do not need the Off Switch for my Leukemia, but just for everything else going on in this world.  Everyone is feeling anxious not knowing what will happen next in this economy.

     I find that if I can go do something to keep me busy, it gets better.  Also I try to keep going so I am so tired at night that I can go into a good sleep.

     Your going to be fine, and you will be posting some good news as you go along with your treatment to let us know how good your doing.

     That is why we are all here, to listen and help.  Even us long term CML'ers are on here with various questions at different times.

     Please just get on here and ask away.  There is always somebody here to answer you as you can see.

Susan



#15 Rissa

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Posted 04 August 2011 - 01:40 PM

Michael - The last time I saw my hematologist he was very excited that my leukemic cells were down to 2%.  Does that sound right?  My WBC was below normal and he said I might have to go off the gleevec until that number goes back up, but so far he hasn't taken me off of it.  I take 400mg.  My RBC is also low and I take iron pills for that.  I'll be seeing the doctor tomorrow.  This time I'm taking a notebook and writing all my numbers down.  I had the bone pain for the first 2 months.  Then I had a pain free month.  Now the pain is starting to come back.  But from what I've read on this site, that's pretty normal.



#16 Tedsey

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Posted 04 August 2011 - 02:03 PM

Rissa,

I truly feel for you. I know what you are going through. It took me a long time to get back to a normal sleeping pattern. I had all kinds of issues on the drugs and I was certain I would not wake up in the morning. The torture was so profound knowing I had a deadly and incurable disease. It hit me out of nowhere and at the prime of my life. I had a baby and a little toddler. It terrorized me for many months (and traumatized my 3 year old--we are still trying to pick up the pieces). But when I finally agreed to a little help with Xanax (anti-anxiety med), I was able to fall and stay asleep. Now that I have been diagnosed 21 months, things are so much better. I am less terrorized by my diagnosis. And I no longer need drugs to sleep.

I decided to go back into therapy which brought me back to the world of anti-depressants. My psychiatrist and psychologist suggested that I be on one. It has been a good decision for me. But what really helps is having someone I can trust to talk to about just anything. I hope you find what works for you soon to bring peace to your soul.

Occasionally, out of morbid fascination, I read the local obituaries. In reality, there are all sorts of horrible things to die from. And I often see children, teens, 20-somethings, and those in middle age die before "their time". Cancer is just one of many horrible things that can happen. Fortunately, much is known about CML and our drugs are successful for most in slowing down its progression. In some cases, it may even cure an individual or slow the disease down so much, he or she will outlive it. However, I know that is really no consolation along with Dr Druker saying that he thinks some of us may have a good 30 years (again, little consolation because it still brings me to an "early" demise if I last that long). Living with this big "unknown" is so very difficult. Putting the idea of being cheated and shortchanged aside, 30, 20, 10 years is more time with my loved ones. Now, being grateful for a few more years may seem like a cop-out, but it is reality.  Every year is another year; every day is another day.  At this point, I am sure I will experience my son and daughter's first day of school. It is coming up fast. And I have reason to believe I may even be able to go prom dress shopping with my little girl (she's 2 now).

Despite all that, it royally sucks having CML. But deep inside, I feel I have a good chance for an average lifespan (and I was considered young to be dx with this disease). The longer we survive without progression, the more time there is for researchers to develop a cure or better therapies. And some of us, despite CML, may have as good or better of a chance to grow old than others who are not diagnosed with anything. Life is uncertain. The CML just drives it home a lot harder, in fact, at times it can beat you over the head. I am trying hard to change my perspective and realize that I have to be careful in all aspects of my life, like everyone else. My chances of meeting an early end in a car crash is higher than dying of CML any time soon. So, this evens the playing field a little. Should everyone worry all the time about kicking the bucket then? Well, probably not. But as I live, I am beginning to believe my chances for "survival" (whatever that really means) is probably similar to most others. Others just don't realize it is front and center for most of them, if not all of them. Ignorance may be bliss in this case, but knowing can increase the quality of life. It is a dirty little secret a lot of us are in on. So, how do you live happily and peacefully with it? That is what this board is so wonderfully about. As long as we live, it is an ongoing process.

I wish you a restful sleep. And if this is any consolation, it appers that most people 90 and over actually have never taken very good care of themselves. One woman at 100 has been smoking for 90 years. My grandfather and grandmother eat total crap and always have (they are 95 and 94 respectively). But the environment was cleaner during their crucial developing years. Not sure if that has anything to do with it. It just appears that, if you consider a long life a blessing, they got great genes. That is at least the conclusion of the article. So don't let anyone blame you for getting sick. You will find this is a very bad habit in the media and society.

Please take care. Write as much as you need. I will listen.

Tedsey



#17 Rissa

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Posted 04 August 2011 - 02:20 PM

Tedsey,  I really like what you said - "Others just don't realize it is front and center for most of them, if not all of them.  Ignorance may be bliss in this case, but knowing can increase the quality of life.  It is a dirty little secret a lot of us are in on."

How very true.  Thank you for sharing your thoughts.



#18 Susan61

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Posted 04 August 2011 - 03:41 PM

Hi Rissa:  I am on Gleevec for 11 years, and my RBC always runs in the 3 point range. So does my WBC.  Did your doctor check your iron before putting you on a iron supplement.?  They checked my iron levels,and they are fine.  Its the Gleevec that causes the anemia.   I have never taken anything for the anemia, and it has stayed in the same range with no problem.  My doctor has never been concerned with the low WBC either.  I have been on 400mg. since Oct. of 2000, and have never had my dose lowered for any of these problems.   I have had a Oncologist who specializes in CML, and  I have trusted him all the years that he treated me.  He is now retired, but the doctor I see now is still following my original doctors plan of treatment as she agrees that he has done everything right.

      It sounds to me like your going through the phases of newly being diagnosed.  I do not see anything out of the ordinary.  The joint pain is all part of it, and yes everything is normal in the way things are going from what I can see.

     Unless your extremely low in the WBC, you should not be taken off your drug.  It balances out.

     Just sharing information from my experience and knowledge of having CML for 13 years, and not trying to say your doctor is wrong in anything.



#19 lala

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Posted 04 August 2011 - 03:48 PM

Hi.....I like your prom dress idea!  Back in 2006 when I was diagnosed, I hoped to see my youngest finish college.....he was in 9th grade!  Now, he is a jr. And I know I will see him finish.  I actually plan on living a long time.....that is the gift that five good years of Gleevec has brought me.  I do know how lucky I am.....I do understand the fear of leaving little ones....they need their mommy.  A mommy's love is ssooooo special.  I just wanted to tell you I hope and pray that you do go prom dress shopping!  ;). Maybe even become a Grammie....I became one ten months ago, and it is wonderful!   My youngest leaves for college in nine days....I am grateful.  Wishing you the best and many many years!  Lala



#20 Jamar

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Posted 05 August 2011 - 04:44 PM

I felt the same way when I was first diagnosed. I started going to a naturopath to help me with side effects and anxiety. She worked with me and anything she recommended was brought up to my Onc for his approval.

I started getting accupuncture treatments for stress and I used recue remedy (sold at whole foods) to help me sleep when needed.

My wife had been going the the same naturopath for a year before I went, I always joked that she was going to see her witch doctor.

My view of naturopaths has definitely changed since then






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