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Frustrated with my situation


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#21 alexamay09


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Posted 10 September 2015 - 04:34 AM

Sorry to read the awful stuff you are going through.  No wise words but good luck and I hope things improve soon.



#22 SUE


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Posted 10 September 2015 - 09:53 AM

So sorry to hear about all the issues you are dealing with.  Please continue to let us know what's happening..


Hugs and prayers,



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


#23 Buzzm1


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Posted 10 September 2015 - 11:50 AM

We're all pulling for you PJM; please continue to keep us informed.



For the benefit of yourself and others please add your CML history into your Signature


02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive


2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17


At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  


In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  


longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.


Cumulative Gleevec dosage estimated at 830 grams


Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  


Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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#24 acl


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Posted 10 September 2015 - 12:50 PM

I have not posted in a while put I am not doing very well with all of this.  An update on my situation.  I was diagnosed in April 2014 at City of Hope.  At the time of diagnosis I had a PCR of 145% and 2% blasts.  I have had suboptimal responses to both Tasigna (PCR dropped to 19% and then rose); and Sprycel (stopped because PCR was 44% and rising).  I have been on ponatinib since December starting off at 15mg.  PCR indicated a decrease to 9%, but then it rose to 12%. Dosage was increased to 30 mg and PCR dropped to 4.5% and then rose again to 5.5%. Dosage was then increased to 45 mg.  Latest PCR is 2.9% with FISH showing 4%. Numerous mutation tests reveal no mutations.  I have never missed a dose of medication either. 

 I am now transfusion dependent with an average of 2-3 platelet transfusions a week, blood every other week along with neupogen shots 2x weekly. I am transfused when platelets are below 15,000 and hemoglobin is below 8.0.  I get neupogen when WBCs are 2.5 or lower.  I have my blood tested Mondays, Wednesday, and Fridays.  My doctor is concerned with the number of transfusions I am having (so many I have lost count!)  because you can develop antibodies which are a serious complication especially if  I need a bone marrow transplant in the future.  Last Friday dr. did not want to transfuse me even though I was at 15,000 to see if I could hold out until Monday in an attempt to try to see if he could avoid a transfusion.    Well, 24 hours later on Sunday I ended up in the ETC with platelets at 6,000;  so low I had to have a CT scan to make sure that I did not have a brain bleed.  My hemoglobin was 7.5 which explains why I felt like crap and it was an effort just to climb stairs. 

City of Hope is pursuing possible bone marrow transplant donors as my only brother is a half match.  But guess what??? I apparently have rare DNA and there are only 2 potential matches for me from worldwide databases.  Those two individuals are being contacted for additional testing.  The plan is to leave me on Iclusig (ponatinib) for another month (it is leaving my skin looking like a snake or wrinkled elephant its so dry) and then go to bosutinib.  If that doesn't work dr. said I should strongly consider having a transplant.  There is little in the literature on the internet that I can find regarding what to do with patients who do not respond optimally to multiple tkis.  I know my case has been discussed with various drs at City of Hope in terms of treatment options. 

I am frustrated, mad, and just plan worn out with all of this.  Hard to be positive with such an unknown future not to mention the constant blood tests and transfusions I have to endure along with a possible bone marrow transplant looming off in the distance.   Just wanted to vent - CML sucks.

PJM, My thoughts and prayers are with you. Please take care and keep us updated.


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.





06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%





#25 Trey


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Posted 23 September 2015 - 08:39 AM

There is a new medication approved a few months ago for low platelets called Promacta (Eltrombopag).  I see that it has been used for CML patients with chronic low platelets.  You might want to ask your doc about it.





#26 hannibellemo


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Posted 23 September 2015 - 01:09 PM



Somehow I missed this post in July. I just wanted to add my hopes that your response to the TKIs will continue to hold and give your blood the time it needs to recover.  Although CML is not a walk in the park for many of us, it's easy to forget that for some of us CML continues to be a life and death situation even when we're trying hard to do all the right things.


Never give up! I hope you draw strength from all of us pulling for you.



"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>

#27 minu


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Posted 26 September 2015 - 01:41 AM

I don't know much about the options for treatment but from others posting I feel that you have every chance to come out of this situation. I will be praying for you. Minu

#28 PJM



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Posted 03 November 2015 - 10:07 AM

Good Morning


Just wanted to give an update on my situation.  I have now failed bosulif and my PCR taken last week is up to 30%. I continue to be transfusion dependent which is very hard on my body not to mention the 3x a week visits to City of Hope.   I now have built up a  high iron level due to the whole blood transfusions and need medication to reduce it.   I was hospitalized in September for 4 days due to septis which was a real wakeup call as to how vulnerable my body is despite the fact that I am very careful to try and prevent situations that could make me sick such as staying out of crowds, avoiding sick people, and diligence with hand washing.    I met with 2 CML experts at City of Hope on Friday  and was at UCLA yesterday.   I told the drs. at City of Hope that I wanted another  review of my case outside of that facility. It is believed by all of the drs.  that I have some form of MDS in addition to CML and a probable yet unidentifiable mutation.  The UCLA dr. told my husband and I that there is no drug that will work at this point because my bone marrow cannot produce normal white or red blood cells or platelets. It is in essence failing.  Both City of Hope and UCLA drs. confirm this is the opinion that would be supported by other CML experts in the field.  


The only option I have at this point is a bone marrow transplant which makes me the nightmare reality for all CML patients; someone who has tried multiple of the miracle TKI's to no avail (I have failed 4).   The drs. have told me to do this as soon as possible so as to avoid another major infection and before I am no longer in chronic phase. 


A perfect match donor has been identified for me and I pray that she consents to be the one to save my life.  She is the only match for me worldwide.  To use my half match brother or cord blood presents other issues that could impact the success of the transplant and my ultimate survival. 


So I ask for your prayers and good wishes.  I am a Christian woman and I am trusting that God will guide me through this difficult procedure and give me more time to be here on this Earth with my husband of 32 years, my 23 year old son and 18 year old daughter as well as my extended family and friends. 

#29 Gail's


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Posted 03 November 2015 - 10:19 AM

I am very glad you found a perfect match! I can't imagine that someone would be in the donor registry and then not agree to donate, so I'm feeling confident for you. Hold on and know that many positive thoughts and hopes are coming your way. Please keep us posted!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#30 kat73


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Posted 03 November 2015 - 11:04 AM

PJM - You've got those prayers and good wishes, coming right at you, starting now and ongoing.  I agree with Gail's - if someone is in the registry, they will come through.  And to get a perfect match is really great.  I know this is scary and you've been through so much.  But my first reaction was to think, well ok, you've been through the first four options and now you're moving on to the fifth.  Just another tool in the tool box, just another phase of the fight.  It's a biggie, but it can be done and you will do it.  You will come out on the other end all right and good to go on with your life.  Keep us posted. 

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.

#31 Kellyb333


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Posted 03 November 2015 - 02:42 PM

PJM, praying for you!!!

#32 Trey


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Posted 03 November 2015 - 02:55 PM

Having a poorly functioning bone marrow while having CML is very difficult.  The drugs would probably work otherwise, but that is little consolation at this point.  If the matching donor consents it would seem to be a good choice to proceed with BMT. 

Edited by Trey, 03 November 2015 - 02:55 PM.

#33 Kali


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Posted 03 November 2015 - 08:24 PM

It makes me sick that you are going through this. I do know the power of prayer. I am a Christian also. I will pray for your doctors to guide you well and for success through this journey. I hope you feel some peace and strength as you move forward with your decisions.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%

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