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#1 Susan61

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Posted 19 January 2016 - 06:27 PM

Hi Everyone:  I could not begin to tell you all the things I have been going through, but nothing to do with my CML.

     I just saw my Oncologist today, and got my 15th year of PCRU.  I am still on the Gleevec, and really keep telling myself to take a vacation or cut dose.

     I have heard how well a lot of people are doing on the Sprycel.  May you all continue to beat this disease.

     I really will try to get back into the swing of things by March, but I do miss everyone.

     Anxious to find out how everyone is doing with their TKI treatments, and would love to be able to inspire any new people who have no idea what to expect.

     God Bless All Of You. :)



#2 gerry

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Posted 19 January 2016 - 06:43 PM

Hi Susan,

 

Glad to see you back on here. I remember some of the items you were going through earlier, so understandable that it would be taking up your time.



#3 Susan61

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Posted 19 January 2016 - 06:48 PM

Hi Gerry:  ITs so nice to see so many regulars on here, yes it seems like my problems never end.  I just keep trusting God to get me through it all.  Hope your doing very well also.



#4 Marnie

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Posted 19 January 2016 - 09:47 PM

Hi, susan. . .nice to hear from you!

#5 Melanie

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Posted 19 January 2016 - 11:47 PM

Congratulations Susan on 15 years PCRU! God bless you!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#6 soundoff

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Posted 20 January 2016 - 12:38 AM

Glad your doing good Susan!

#7 r06ue1

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Posted 20 January 2016 - 06:40 AM

Susan61, have you asked your Oncologist about stopping the medication?  You've been undetectable for that long maybe the CML no longer exists in your system.  My Oncologist was talking to me about taking me off the medication in a year and a half or two years if I attained a deep remission (yes, he prefers to use that word) before I had even started it.  Might want to ask about it.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#8 hannibellemo

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Posted 20 January 2016 - 07:09 AM

Susan,

 

So good to hear from you! Hope your health issues are being resolved; anxious to hear what has been keeping you away. Yes, I think after 15 (!) years PCRU you can contemplate a reduction in dosage.  ;)  (I know you are cautious and like to take things slowly.)


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>


#9 scuba

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Posted 20 January 2016 - 10:58 AM

Hi Everyone:  I could not begin to tell you all the things I have been going through, but nothing to do with my CML.

     I just saw my Oncologist today, and got my 15th year of PCRU.  I am still on the Gleevec, and really keep telling myself to take a vacation or cut dose.

     I have heard how well a lot of people are doing on the Sprycel.  May you all continue to beat this disease.

     I really will try to get back into the swing of things by March, but I do miss everyone.

     Anxious to find out how everyone is doing with their TKI treatments, and would love to be able to inspire any new people who have no idea what to expect.

     God Bless All Of You. :)

 

Hi Susan,

 

You know how I feel - you are cured. And have been for a very long time. You take Gleevec because it gives you comfort. If you stopped taking Gleevec, you will be anxious and nervous. And I can understand and appreciate that feeling. I'm anxious about narrow widths in high places.

 

But consider this. You don't have to stop all at once. As you are addicted to Gleevec, you can stop slowly. First thing to do is cut your dose in half. And in three months when you receive another PCRU, you can go one month without Gleevec and get tested in one months time. When you receive another PCRU, you go another month and another month. And then when you have a year of PCRU's, one month at a time, you will have been weaned off your dependency, You would continue to go back to every three months and continue your PCRU, sans Gleevec.

 

And know this - every single patient, without exception, who lost response after stopping their Gleevec during the STIM trials, re-attained their response once they resumed. No exceptions. Your risk in trying, therefore is < 0.00x%. But you have to want to do this. I do recall when I went without my TKI the first day deliberately when I tried to stop. I was pre-occupied that night whether to acknowledge I am making a big mistake in trying. I went on nine months without any drug. What a feeling. I went back on because my numbers did creep up. A couple of months later, after resuming my low dose, back near or below detection.

 

I envy your position. PCRU for 15 years. Wow.

 

God speed,

 

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"


#10 simone4

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Posted 20 January 2016 - 11:58 AM

Yeah Susan, I have thought about your so much.  If fact you

were on my mind this morning, and then I find this post.

I know you have been having heart issues, a pacemaker

that didn't work, etc.

 

So glad you are able to make contact with us.  How is

Gary,?  Well, I hope.

 

Take care and know you were very much missed.

Simone



#11 gerry

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Posted 20 January 2016 - 08:24 PM

Hi Gerry:  ITs so nice to see so many regulars on here, yes it seems like my problems never end.  I just keep trusting God to get me through it all.  Hope your doing very well also.

Hi Susan,

I've been two years off Gleevec now, still showing negative on test results.

One day you'll be ready to have a go at dose reduction. It will reduce a number of the side effects you're feeling. :)



#12 pammartin

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Posted 21 January 2016 - 05:42 PM

Great to hear from you Susan.  Congratulations on the 15th year!  Love reading those results.  Blessings to you also. 



#13 kat73

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Posted 21 January 2016 - 07:38 PM

Please do come back more, Susan.  You were one of the first people I "listened" to when I first came to this forum and was so, so lost and downhearted.  And there you were - a real veteran from the first days of Gleevec - and you were doing great on it.  Even though I didn't post for another few years, I really depended on your voice, along with the others here.  I had been wondering how you were.


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.


#14 ChrisC

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Posted 22 January 2016 - 08:36 PM

God blesses you, Susan: 15 years of PCRU! What more could you ask for? Except, maybe, being treatment free, when you are ready, of course!

 

You are so strong, thank you for all that you share, it helps everyone to hear your ongoing story.

 

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#15 xGunner

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Posted 26 January 2016 - 12:55 PM

Susan-

 

Glad to hear from you. Many of us do not frequent the boards as much, for assorted reasons. But it is always good when folks check in.






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