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I am so sad for my friend...


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#1 Lizzybee

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Posted 12 May 2012 - 06:21 PM

She is having surgery Monday to remove a tumor, confirm the diagnosis, and stage the cancer, but she probably has Stage IV/metastasized ovarian cancer.  If the preliminary diagnosis is correct, she plans to refuse further treatment.  We have worked together for over 10 years.  As much I might complain about CML, this puts it in perspective.



#2 Susan61

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Posted 12 May 2012 - 08:44 PM

So sorry about your friend, and lets just hope and pray that it is not as bad as they think.  Ovarian cancer is one of those that can go too far before its found. 



#3 mariebow

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Posted 12 May 2012 - 08:57 PM

sorry to hear also.



#4 janne

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Posted 12 May 2012 - 09:29 PM

Sorry to hear this Lizzy...hoping too for your friend.


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#5 pamsouth

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Posted 12 May 2012 - 09:34 PM

Will be praying for your friend on Monday and that all goes well with the surgery.  You are a good friend.

Know what you mean about complaining about CML.  Sometimes I am so focused on the CML I forget what is going on around me.

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#6 Lizzybee

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Posted 12 May 2012 - 10:45 PM

Thanks, everyone.  She's known for a long time that something was wrong, but kept telling herself it would get better.  She didn't go to the doctor until she could feel the tumor and the pain became unbearable.  After her CT scan or ultrasound (I can't remember which it was), they called her back to the dr's office within an hour and had already made her an appt with an oncologist. They also sent her for a mammogram, and it's abnormal, too.  She saw the oncologist on Tuesday, and she (the onc) wanted to do the surgery on Wednesday, but K. had taken aspirin, so they had to wait 3 days.  So it doesn't look good.  But maybe this will be one of those times that the drs are wrong and it won't be as bad as they expect.  I'll update after I know more.



#7 Guest_billronm_*

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Posted 13 May 2012 - 12:46 AM

Dear Lizzybee,

  I am so very sorry for your friend, and you also. It is so hard to accept their wishes. When we love someone we want them with us as long as possible. But I have been through the treatments with so many of my family members,just for that small glimmer of hope, or that miracle we all pray for.

  I have told my family, and doctors, that if anything else turned up on me, I am refusing any kind of surgery or treatment. I just want to have a better quality of life, then I would if I had any treatments, Which would be worse than the disease. I want to be able to have a better quality of life (pain free) even though it would be shorter than if I received treatment. I'm not even getting any more tests done (except for my cml). This is my 3rd close call with cancer, and I've been through some pretty nasty procedures, and tests, I understand how your friend feels. Cherish her as long as you have her.  Sincerely Billie



#8 0vercast

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Posted 13 May 2012 - 07:40 AM

Sorry to hear about your friend.  We do have it pretty easy compared to many others with cancer.  I'm often reminded of this when I go to the cancer center for blood draws and appts, and see how sick and feeble some of the other patients are in there, moaning in pain and such.  That's why I could never go to the cancer discussion groups at the local cancer center.  A friend of mine who knows the whole CML story said going to these meetings would be like going to an Narcotic Anonymous meeting full of serious addicts and complaining about being addicted to smoking pot.



#9 Antilogical

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Posted 13 May 2012 - 09:41 PM

I feel the same way.  Tomorrow, I'll be going in for my bi-weekly blood test.  No matter how bad I feel from the Gleevec, I'm almost embarrassed to be reporting my side effects to the nurse, when I see a waiting room filled with people on oxygen or in wheelchairs.  I keep reminding myself that I'm fortunate to have developed this particular form of cancer when I did.


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.


#10 pamsouth

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Posted 13 May 2012 - 10:40 PM

Antil,

I feel the same way about not complaining.  If I complain what they gonna do change my drugs, I don't want that. They all have their own demons, it's like trading one thing for another, I don't want to go thru all that again.  What would be the other choice, well I have learned over the years if you complain they have their prescription handy pad close by, and just start writing prescription.  Got pain, pills, got this, got that, pretty soon you got a big box of pills, and who knows how all the chemicals work together and the long term side effects.  Just watched the news the other day, they named three arthritis pills, interviewed 1/2 dozen women who took the pills over 3 ?5 years and broke their large femur bone, that was caused by the pill.  My husband took arthritis pills a couple of years, he swelled up so bad and the doctor double the dose, then gave him pain pills, then neurotic pills, then predisone.  Pretty soon he was falling down, I had to bath, feed and dress him, because his hands were so swollen, he could get up out of the chair or out of bed.  Took him to 1/2 dozen doctors, PAD test, good blood flow, neruophy test, no neurophy.  Colon, cancer, heart, no problem. Turned how he was allergic to the Meloxicam Arthritis pills, and none of the doctors wanted to stop the pills against his primary physician.  So he slowly got off all the pills, went to physical therapy and has worked a little over a year.  He still has arthritis but he keeps moving, rather then to take the pills.

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#11 Lizzybee

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Posted 14 May 2012 - 12:59 PM

Update: She is out of surgery, they got all of the mass, and they don't think it has spread to other organs!  We'll know more after the pathology report is available, but it might not be as bad as we thought.



#12 CallMeLucky

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Posted 14 May 2012 - 02:35 PM

Glad to hear it may not be as bad, that is hopeful news.

As far as the perspective, my doctor tries to be good about it.  I said something like "I know what I have is not as bad as your other patients".  She stopped me and said "it's not about better or worse - you have it different".

I recall the first time my wife came with me to an appointment when I was first diagnosed.  I was still kind of in shock and I was standing at the nurse's station waiting for some paper work caught up in my own head.  My wife was standing next to me and did a slow 360 looking around the room, from where she was standing you could see the waiting room, people in exam rooms and treatment rooms.  She put her hand on my shoulder and whispered into my ear and said "I don't think there's a person in this room who wouldn't trade places with you".  She wasn't trying to be optimistic and she wasn't trying to be dismissive, she was just observing and making a statement.  I came out of the ether for a minute and scanned the room.  People with IV chemo, people in wheel chairs, people who had lost all their hair, people sleeping, some with family members sitting next to their bed weeping quietly.  I got to walk out the door that day with a prescription and go home to have dinner with my children. 

I don't take my situation lightly, having CML is difficult.  It is hard emotionally and the side effects are taxing.  However, at the end of the day we certainly have a lot to be thankful for when all things are considered.

Hope your friend's situation turns out well.


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%
 

 


#13 Susan61

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Posted 14 May 2012 - 03:05 PM

Thats good news.  Just pray that everything checks out including the abnormal Mammo.  So many people have gotten a bad scare with a Mammo report, then after further testing they find out its negative.  She has a very good friend in you.

That is so important in recovery and attitude.






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