Just diagnosed with CML (Chronic Myeloid Leukemia). He will start chemo treatments tomorrow and will do them for 4-5 days. The doctors will then see how is body is doing with the chemo and that will determine when we go home. After all the chemo is complete he will get a bone marrow transplant in the near future. (26 year old male). Why would he be treated in this fashion as opposed to Gleevec or Sprycel?
Question about a new CML patient
Started by
CML2012
, Dec 19 2015 03:30 PM
10 replies to this topic
#1
CML2012
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Posted 19 December 2015 - 03:30 PM
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
#2
mdszj
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Posted 19 December 2015 - 04:27 PM
hi cml2012
There are others on this board much more knowledgeable than me but that does not sound right to me. First thing: They should see a new CML specialist asap. Unless this new person is in blast phase, I think the doctors are jumping way, way ahead of themselves here and skipping the most important treatment. TKIs are front line therapy these days and are the only way to go, nothing else even approaches them for effectiveness and patient safety. I think that only after getting results showing that all 5 TKIs do not work, then there is no reason to take chemo or get a transplant.
Did he consult with a specialist? Who is it and what is the facility that the patient went to? If not, there is no reason to do anything until they do.
Anyway, Good wishes to him.
dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16
#3
Bb1823
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Posted 19 December 2015 - 04:39 PM
Hi Cml2012, it sounds to me like he must be in blast phase. My husband was treated the same way, but was also put on sprycel the day we found out he was ph+. The docs thought at first it was early stage aml.
The good news is that only a little over a year later, my husband is PCRU even though his transplant didn't take. Let the chemotherapy do its job and knock the hell out of the Cml, and then the TKI can attack the residual Cml once his counts recover.
The good news is that only a little over a year later, my husband is PCRU even though his transplant didn't take. Let the chemotherapy do its job and knock the hell out of the Cml, and then the TKI can attack the residual Cml once his counts recover.
#4
CML2012
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Posted 20 December 2015 - 08:17 AM
Thanks for the insight. Any and all replies are appreciated in regards to this situation.
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
#5
hannibellemo
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Posted 20 December 2015 - 09:03 AM
There's really nothing more we can say until we have more information. Have you asked the onc why they are proceeding in this manner rather than the more usual route of oral drugs?
Good luck!
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>
#6
Trey
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Posted 20 December 2015 - 10:53 AM
Hard to speculate on the exact reason but there are several generalized possibilities.
Proper reason to go straight to BMT:
The one real reason this is done is advanced Blast Phase CML which had essentially morphed into Ph+ AML or Ph+ ALL leukemia.
Improper reasons:
Misdiagnosis of the severity of the disease based on outdated information. TKI drugs have proven the ability to overcome many unusual CML cases, but many Oncs cannot recognize that. That is why a second opinion from a true CML expert is essential before deciding on BMT. Quite a few members here have unusual Philadelphia Chromosomes which in the past would have been sent straight to transplant, but most have done very well on TKI drugs. The unusual Ph+ can include three-way translocations, unusual breakpoints such as e1a2, and secondary chromosome mutations such as trisomy 8 and monosomy 7, der 9, among other unusual issues.
To comment on the exact case it would be necessary to see the bone marrow biopsy report.
#7
dede5
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Posted 20 December 2015 - 11:38 AM
This sounds similar to what I was told in the beginning. I was borderline accelerated/blast crisis at dx, and was told I had a very aggressive leukemia. Had the BMB and thought I was to start chemo at my first onc appt. Was also told a BMT would be in my near future. Once I met with him it all changed. This is just one person's perspective, though.
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 
#8
Buzzm1
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Posted 20 December 2015 - 11:51 AM
This sounds similar to what I was told in the beginning. I was borderline accelerated/blast crisis at dx, and was told I had a very aggressive leukemia. Had the BMB and thought I was to start chemo at my first onc appt. Was also told a BMT would be in my near future. Once I met with him it all changed. This is just one person's perspective, though.
dede5 ... lucky you on dodging a bullet ... that was close ... kudos to your onc.
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
2012 PCRU, PCRU, PCRU, PCRU
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.
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#9
dede5
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Posted 21 December 2015 - 12:11 PM
dede5 ... lucky you on dodging a bullet ... that was close ... kudos to your onc.
Buzz, you are right...and I'm very thankful!
CML2012, Please let us know how things are going. Take care.
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
#10
CML2012
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Posted 21 December 2015 - 04:03 PM
So far I do not have any more information. He lives close by and I was given minimal information by friends. If I hear more I will update the post. I spoke to my previous oncology nurse and she said they are seeing more and more CML cases. She is not sure if it is because more are going to the doctor or if there are more cases.
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
#11
xGunner
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Posted 22 December 2015 - 01:01 PM
I spoke to my previous oncology nurse and she said they are seeing more and more CML cases.
A caution to comments like that- Are they seeing an increase in new diagnosis? Or just they have more patients with CML? Most of the oncs that work with the folks on this board have more CML patients, simply because we are not dying off as quickly.
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