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Frustrated with my situation


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#1 PJM



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Posted 03 July 2015 - 11:06 AM

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.

#2 Terran


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Posted 03 July 2015 - 11:33 AM

Wow. That's rough. Anything I say sounds trite, but I want you to know I heard your vent and I care. Jesus bless you.

#3 Trey


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Posted 03 July 2015 - 11:33 AM

That is a tough road to travel.  Very low blood counts vs taking enough drug to be effective pulls in separate directions.  It is worth trying Bosulif, and possibly it could be different for you. 


You cannot stay on the current path, physically or mentally so if the Bosulif does not work you will either need to try a clinical trial (see link below) or have a BMT.  If as a last resort a BMT is necessary it can be done with haploid matches such as a sibling which otherwise is not an HLA match.


You might also want to contact either Dr Talpaz at the University of Michigan or Dr Druker at Oregon Health Sciences Center.


Here are some clinical trials are recruiting:



Some I found interesting:





This is Canadian trial, maybe a US trial will become available:


Edited by Trey, 06 September 2015 - 09:36 AM.

#4 snowbear


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Posted 03 July 2015 - 04:54 PM

I am so sorry that you having such a tough time.  It's understandable that you're angry and frustrated.  I hope your doctors find an effective treatment for you soon.  Keep us posted and take care.

#5 pammartin


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Posted 03 July 2015 - 09:53 PM

I have no great words, but I am listening as we all are and we are here for you.


Please take care and keep us updated.  Positive thoughts and prayers to you and your family.



#6 dede5


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Posted 03 July 2015 - 10:49 PM

I'll be keeping you in my heart, thoughts, and prayers. Please let us know how things are going. Vent all you want. You're among friends.

Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D

#7 Frogiegirl


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Posted 03 July 2015 - 10:56 PM

Virtual hug coming your way. .....

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

#8 Melanie


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Posted 03 July 2015 - 11:47 PM

So sorry for the rough road you're on. Maybe the Bosulif will be more gentle on your blood counts. It's proven to be for me. I hope you're able to contact the specialist that Trey suggested and hopefully they will have some good advice for you.
Please take care and know we're here for you to support and to vent all you want. I'll be praying for 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)

#9 kat73


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Posted 04 July 2015 - 05:34 PM

Wow, PJM, you are in an awful tough spot and it's no wonder you are plum worn out.  Listen to Trey.  Take a deep breath and try and get your mind rested and calm, so you can think logically.  (Not that you aren't already.) The next step is Bosulif.  If that doesn't work, contact Druker or Talpaz (or one of the other biggies, Trey?) and, in my opinion, your situation would warrant the effort and expense of a visit.  They will know what to do.  It may be a transplant; fine, you can do it.  You can come through that.  It must be doubly nightmarish to be on here and hear all about everybody's great successes - early and deep responses, people who are PCRU, people who are experimenting with quitting TKI's, and people mostly unhappy about side effects, not their prognoses.  It must feel weird that way for you.  I am sure you are going to find a solution and get on track.  You need some emotional rest and someone to help you handle all the logistics and decision-making.  Please keep us up on what's happening.

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.

#10 missjoy


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Posted 05 July 2015 - 07:27 AM

Imatinib and BL-8040 (Novel Anti CXCR4 Antagonist) for Improving Molecular Response in Chronic Myelogenous Leukemia
This study is not yet open for participant recruitment. (see Contacts and Locations)
Verified May 2014 by Sheba Medical Center
Sheba Medical Center
Information provided by (Responsible Party):
Sheba Medical Center
ClinicalTrials.gov Identifier:
First received: April 14, 2014
Last updated: May 8, 2014
Last verified: May 2014
History of Changes

#11 roamingdoc83


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Posted 05 July 2015 - 08:45 AM

Deepest sympathies... the complexity of the illness can be overwhelming for a percentage but "all" face major life style changes once diagnosed. I so very much wish your situation were different. At least, in the fullest sense of the 'history' of CML, you have a fighting chance and no one seems to be giving up... please don't! God Bless... while to some it is trite, prayer is helpful. Hang tough.

#12 Trey


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Posted 04 September 2015 - 03:17 PM

Recent comments on another post made me wonder if you had any updates regarding recent PCRs or FISH and drug dosage.  The last FISH was pretty good if you can just get through the very low counts.  If you can get past the next several months, tough as they may be, you could see improvements.  Others have gotten through this same issue.  As long as the PCRs/FISH are not going higher you can get through this using the TKI drug(s).  You respond to the drugs, but they also drive the blood counts very low.  A balance among drug dosage, test results, and blood counts is required and can take a while to sort out.

#13 tiredblood


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Posted 04 September 2015 - 07:25 PM

I'm just curious... how long were you on each drug before being changed to another drug, and at what point within the drug changes did you become transfusion dependent?

#14 OhNanna



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Posted 04 September 2015 - 08:21 PM

I'm real new to the CML roller coaster, so I really don't have any wise words, but I heard your frustration and fear...and I will pray for you!

#15 CallMeLucky


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Posted 04 September 2015 - 10:11 PM

Hang in there, we are thinking about you,
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%


#16 Billie Murawski

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Posted 04 September 2015 - 10:50 PM

pjm, I wish I had some words of wisdom to help you calm down.I cannot even imagine what you are going through right now. We're all here for you so get on the board and vent out loud as much and as long as you want to.  Sincerely Billie

#17 PJM



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Posted 05 September 2015 - 11:42 PM

Thank you to all of you who have responded to my post with kind words.   I am definitely one of those few slow responders on this board so those of  you who have responded to me and my ongoing difficult situation makes me feel included in the discussion.  Yes, I do have an update.  I had another BMB on 8/7 and that test showed a rising BCR/ABL level to 7.01%. The lowest I have been was 2.9% on 45 mg of ponatinib.  My doctor has switched me to bosutinib 400 mg daily;  my 4th TKI.  I had another PCR taken last Wednesday and awaiting the results of that important test.  I hope that it reveals some improvement in terms of leukemia percentage.  Side effects of bosutinib for me include nausea, upset stomach, and more fatigue. I am still transfusion dependent with 3x a week blood draws.  This past week I have had 1 blood and 2 platelet transfusions along with 2 shots of neupogen so no real improvement in terms of my blood counts as of yet.   It is hard to say exactly how long I was on the various TKIs.    Once my BCR/ABL started to rise, my dr would either increase the dosage or switch me to another TKI.  I think it was 4 months each on both Tasigna and Sprycel.  I started on ponatinib I believe in December of last year but have been on 15mg, 30mg, and finally 45 mg.  I have had multiple mutations tests and all were negative. I remain frustrated with all of this and the constant waiting for results etc. 

#18 Trey


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Posted 06 September 2015 - 09:32 AM

Considering the fight with low blood counts, your PCR results are in the acceptable range.  You do respond to drug therapy, so that is the good news.  The tough part is obviously the low blood counts which is miserable and prevents taking high dosage for very long.  Hopefully Bosulif will help with those low counts.  Your normal blood cells are just taking a long time to ramp up production.  Most can work through it although it is certainly a difficult process which can take some time. 


You also have other options available, so don't lose hope for drug therapy.  A clinical trial for a drug called ABL001 which should have fewer side effects might help with the low blood counts.  If the Bosulif does not help enough, ask your Onc about this trial.  There are 5 US locations.  Primary entry criteria:
"Patients with Philadelphia chromosome-positive CML in chronic or accelerated phase who were previously treated with two different TKIs prior to study entry and are relapsed, refractory to or intolerant of TKIs as determined by investigators."



Edited by Trey, 06 September 2015 - 09:37 AM.

#19 soundoff


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Posted 07 September 2015 - 10:53 AM


I'm sorry to hear about your rough road.
Blood transfusions are a roller coaster ride I'v been there. I have reviewed your post here and I truly believe you should reach out to a few CML specialists. If you haven't consulted with them you should do so ASAP. Of the few I know Dr.Talpaz, Dr.Shaw, Dr.Druker, Dr.Mauro and a few others come to mind. Given your situation all you have to do is pickup the phone, they will talk to you over the phone I'm sure. I would also seek a 2nd consultation venue at this point. My suggestions would include places like UCSF or Stanford. Have you tried interferon? Please keep us updated.


#20 Tucker1


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Posted 07 September 2015 - 08:26 PM

Sorry to hear how rough things are for you. I will keep you in my thoughts and prayers.
Dx: 11/2004 intermediate risk 400 mg Gleevec
11/2005 partial cytogenetic response PCR 6.3
Clinical trial Sprycel 50mg 2x daily 12/05
11/06 PCR weak positive
10/07 PCR undetectable
12/08 PCR .017
Recurring colitis from Sprycel
11/09 Tasigna PCR .0075 200 mg 2x daily
11/10 PCR .078 400 mg 2x daily
11/11PCR weak positive
2/12 PCR. .15 decrease 200 mg 2x (QT prolongation)
Dosage changes until 2015 QT recurrent PCR .004
7/15 bosulif 500 mg
Liver toxicity discontinued bosulif PCR .025
Restart bosulif 100mg
12/15 PCR .714
Increase bosulif slowly
2/16 PCR.5
5/16 PCR .000 bosuitinib 400mg
8/16 PCR .027 Bosuitinib 300mg
10/16 PCR .117 Bosuitinib 300mg
1/17 PCR .243 Bousitinib 300mg
4/17 PCR .403

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