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Trey and Susan


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#1 scuba

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Posted 30 November 2013 - 11:50 AM

https://ash.confex.c...Paper63900.html

from the paper,

"Conclusion

We confirm that Imatinib can be safely and prospectively discontinued in pts with DMR of at least 2 years duration in patients only treated with imatinib. To stop treatment it may not require the complete eradication of residual leukemic stem cells since positive fluctuation PCR results do not lead to CML relapse or progression. These intriguing results, even for imatinib treated patients since disease onset (already observed after IFN therapy), are comparable to those reported with the more sensitive PCR on DNA in the TWISTER study and are under investigations in our laboratory. "

Something to think about - eh?

You're both cured and I envy both of you (and Chris C too!).

Michael


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"


#2 Susan61

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Posted 30 November 2013 - 04:32 PM

Hi MIchael:  I have not been checking things too much lately because I have my  mother in the hospital right now.  They are looking for a possible Leukemia with her.  She just had a BMB, and we are waiting for results.  She has a high WBC and her platelets are too numerous to count, and she has a bad heart so the family and I are just so overwhelmed with trying to figure out what to do next.

     Thank You for using Trey and I as an example on this.  All this new news is sounding very good to me.

     I will check that information on the website better when I get a minute.  I can really use some very positive news on Leukemia right now.

Susan



#3 Susan61

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Posted 30 November 2013 - 11:37 PM

HI MIchael:  Right after I posted to you, I got  a call from my mothers doctor.  She has CML, but they do not know yet at what stage.  I am not good with all the technical stuff like I always say.  She has 3 translocated Chromosomes he said, and due to her age and heart condition they are not putting her on a TKI drug.  She will be put on Hydrea for now as of today.  Hard to understand him and his accent.

     The doctor did not realize that I had CML, and we started a conversation.  He agreed with my Oncologist not to reduce or try to stop the Gleevec.  So there are so many different opinions, and it all scares me to try to change my normal routine I guess.  Right now I am more concerned with my Mothers case.

    We could sure use some prayers at this point more than anything.



#4 Pin

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Posted 01 December 2013 - 12:29 AM

Oh my gosh Susan, that must be quite a shock - I wish all the best for your mother, I hope she is ok xx


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 mariebow

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Posted 01 December 2013 - 12:30 AM

Susan I am praying for you and your mom tonite.



#6 hannibellemo

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Posted 01 December 2013 - 09:46 AM

Susan,

My thoughts and prayers are with you and your family. I'm so sorry to learn of your mother's dx of CML, too! I don't know how old she is but I assume she is in her 80's. It is so difficult to know what to do at that age for treatment, epecially if she has other health issues.

Don't neglect your own health worrying about her and keep up posted.

It does make me wonder if there could be a familial aspect to this leukemia after all.

Pat


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 scuba

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Posted 01 December 2013 - 12:16 PM

Hi Susan - my thoughts are with you and your family and I pray your mother pulls through strong enough to start a TKI (low dose?).

I wonder if her doctor is a specialist in CML? Does he follow the latest research and is he familiar with the papers emerging from the ASH conference these last few years.

There is no incentive for an Oncologist to deviate from the current NCCN guidelines. They are not the ones going through the side affects.

There is very strong evidence that patients treated with Interferon prior to Gleevec and who subsequently become PCRU for more than two years are cured. You might point that out to your mothers doctor should you see him again. Keep in mind that Trey lowered his Gleevec dose and continues to be PCRU. Like you - he's cured. And if not - he can just go back on the drug. There have been zero patients who failed to re-achieve PCRU after a drug interruption during the trial.

All the best to you and your family during this time.

Michael

p.s. Some additional reading: http://asheducationb...2012/1/122.full


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"


#8 alexamay09

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Posted 01 December 2013 - 12:22 PM

Susan. What a shock for you. My thoughts and best wishes are with you and your mother.

Alex

Xx



#9 Susan61

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Posted 01 December 2013 - 04:01 PM

Hi Michael:  Thank you for your good wishes.  I am going up to the hospital tomorrow to see if there is anything else I need to know, and to see my mother.  Her heart is very bad, and without the surgery which she refuses they said she will just have a major attack at anytime.  They were not even concerned with the CML at this point.  He did say that she cannot go on any TKI because of this heart issue. She was started on the Hydrea.  She will be 88 in January!!!

     I was on the Interferon and Ara-C for only 4 months before it started to attack my liver.  Then I was on Hydrea for 6 months until I could start the Gleevec Trial.  As you mentioned, some people who could not stay off their TKI drug did recover their PCRU status after losing it by going back on their TKI.  I would like to stop it just to see how I feel for awhile.

   I do not know if I am coming or going at this point.  I get nervous over just the slightest change in my blood counts.

I have always been at around 3.7 in my WBC, and the last two showed a increase in my count only up to 4.3 or something in that range.  Right away I started to worry as to why the count went up. As long as I have seen this constant 3.7 or lower I was happy.  You would have to know my way of thinking to figure me out.  I have been in terrible pain with my Arthritis, and assume there is a lot of inflammation to increase my count by those few points.

  I need to get more positive like you and some others.

Susan



#10 scuba

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Posted 01 December 2013 - 04:51 PM

Hi Susan - God speed to you and your mother. My mother is 91! And her brain is as sharp as ever (which is too bad because she remembers everything).

She still can get around, but limited.

Arthritis runs in my family, but so far I am escaping it. It started to develop in me a few years ago in my hands and hip, but ever since I have been taking Curcumin I have no arthritis symptoms anymore. In fact, I am back to running three miles a day! I am almost back to my college weight which feels great. You might consider taking some Curcumin for the arthritis. Usual dose is 2 grams a day (C3 Curcumin is the one M.D. Anderson uses).

My concern about TKI's are the damage they may be doing to our bodies as we get old. They are certainly a life saver for a lot of us who get CML in our 50's and younger. But after - say - 20 years taking them, I wonder how our kidneys, liver, and other organs are being affected. I know that many doctor's will tell me that I am trading one set of problems (in this case life ending CML) with another (life shortening toxicity). But if we can extend our lives, avoiding CML fatality AND also be able to stop taking the TKI so we can avoid the later affects - then I am going to try.


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"


#11 Susan61

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Posted 01 December 2013 - 08:21 PM

Just a quick note back to you.  My mother is going to be 88 on Jan. 6th, and as sharp as a tack like your Mom.  She makes us laugh at some of the things she says and does.

The Curcumin I was told is a blood thinner, and with me being so anemic, and my platelets are only at 116 sometimes dropping below 100 I would be leary for that reason.  I am presently getting shots of Cortisone in my left knee, because I could not even walk.  After I get done with this situation with my Mom, I was going to go for Synvisc Shots because the doctor does not want to operate on me with the Diabetes that I also have etc.

Its just a vicious cycle with me all the time, so I tread lightly I guess you would say.

Your still very young, and I wish you well on all that your doing.  Please keep giving us all these updates.

Susan



#12 Marnie

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Posted 01 December 2013 - 08:21 PM

Susan. . .sending positive thoughts your way.  Take care of yourself.  Best of luck to your mother.

Marnie



#13 Guest_billronm_*

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Posted 01 December 2013 - 09:06 PM

Dear Susan,

  I'm so sorry to hear about your mother. I remember when she got sick a year ago and you took care of her. My thoughts and prayers are with her,and you and your entire family, and like Pat said please take care of yourself, I hope Gary is doing all right also.                      Billie



#14 SUE

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Posted 01 December 2013 - 10:23 PM

Susan,

Although I'm fairly new to the board, I've seen many of your posts.  You've gone through a lot, and you are always there to encourage others.  I hope for better health for you and your mother.

Sue


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#15 Susan61

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Posted 02 December 2013 - 05:21 PM

Thank You Billie and Everyone Else:  I just got home from the hospital, and she actually looked good.  I need to talk to the Oncologist again.  I got some copies of my mothers blood work dating back to Sept of 2012, and she had elevated Platelets and WBC back then.  I have to see more recent labs, and if this has been increasing all this time without further intervention to find out what has been going on I will have a big fight on my hands.

We still do not have the results back to see what stage of CML she has.  Then the heart is another issue.

I will take care of this matter one way or another, and trying to get her into a Nursing Rehab for now.  She is having severe back pain, and they are saying its from the CML.  It came on her suddenly with no warning.  I need to put the pieces of this puzzle together to get the whole picture.

Gary just finished his last course of Chemo Thank God.  Now he has to get a Cystoscopy after the holidays to see how the bladder looks.

I am going Wednesday for my third shot of Cortisone into my knee.  I am able to walk a little bit better, but still in pain.  2014 has to be better.

Susan



#16 Trey

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Posted 04 December 2013 - 11:23 AM

Nothing new.  There is a big difference between deep molecular response and cure.  Stability of deep response may be nice, but it is not a cure.  Keeping the CML "on the run" with lowered dosage may be a better strategy than living with a stable level of disease that potentially threatens to relapse over time.  It is a choice that each must make. 



#17 Happycat

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Posted 09 December 2013 - 08:52 AM

Susan,

Just logged on and saw this.  I hope your mother is doing better and they will be able to get her stable enough to address the CML and heart issues.  I hope you can find a reasonable answer as to why they didn't investigate the elevated WBC and platelets back in 2012. 

Wishing you and yours good (better) health in 2014.

Traci



#18 Susan61

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Posted 09 December 2013 - 02:15 PM

HI:  I have been so busy, and so aggravated.  I still do not know how my mothers BMB turned out as to what stage she is in.  Apparently since she was transferred to the Nursing and Rehab, the doctors she had at the hospital have no priveleges at this place.  Her Primary there said she would contact the doctors to get some more information.  I am trying to get a hold of the cardiologist and Oncologist who had her in the hospital.

     She is not in a Nursing Home that is close to me, and I am not getting there as much as I would like.  I am doing everything by phone.

     Taking a few days to get some of my energy back so I can think straight.  Its terrible when you deal with a bunch of idiots by phone.

     Again Thank You for all the moral support and prayers.  Lots of legal matters to handle also.

Susan



#19 Trey

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Posted 09 December 2013 - 03:18 PM

You need to have your Mother sign a "health care power of attorney" providing you access to her medical records, then request the BMB report.

http://www.hhs.gov/o...ecords/220.html



#20 Susan61

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Posted 09 December 2013 - 03:33 PM

Hi Trey:  I already have power of attorney. I just had to do a DNR, just in case she does not get back home.

Been so busy trying to secure other matters.  Its been something everyday.  My sister just flew back to Montana, and she is secondary on he POA, so she left it all with me.

     I plan on making some calls tomorrow.  Thanks for your help.






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