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#1 fransdaughter

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Posted 16 October 2011 - 09:15 PM

Hi-- My Mom was diagnosed with CML 3 years ago. She was on Gleevac and was in full remission.  This past July, out of nowhere, she was admitted to Sloan Kettering, NYC in full blast crisis and kidney failure.  She was immediately switched to sprycel and given chemo.   She wound up in ICU--the sprycel made her lungs collect fluid and her kidneys were completely shut down.   She was switched to tasigna, had the lungs drained, and was on dialysis.  Bone marrow biopsy still showed blasts, so they started her on a low level of chemo, round 2. She had a miracle when her kidney function came back.  Her latest biopsy is showing blasts at 5%. 

After 11 weeks at Sloan, she is home. We met with the bone marrow tansplant specialist on Monday, and they are refusing to do a transplant!!!  She has a 10/10 anonymous donor waiting and willing, her insurance gave the go-ahead, and this doctor is saying that she will not do a transplant because my Mom's kidneys had failed once they are afraid it could happen again. We are really upset. My Mom is 60 years old. This doctor stated that when my Mom is healthier, she would do it. Our fear is that right now we have the blasts down and in a "good" number, if we wait, the blasts could go out of control once again and the transplant will  not be as sucessful. We feel that this is our window of opportunity for a transplant.

SHould we switch hospitals??  Anyone in the SLoan Kettering, NYC system that can recommend a doctor (I know they have multiple transplant doctors).?

ANY advice is welcome!!!!!! Mary Ann




#2 cpsn0000

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Posted 16 October 2011 - 09:24 PM

I would absolutley get a 2nd opinion quickly. I would check into Fred-Hutching in Seattle or even go to Moffitt Cancer Center in Tampa where I had my transplant. You need to be with a medical team who has plenty of expierence in deciding if the transplant is a good option. A transplant center will put you through pre-admission testing to make sure you are healthy enough to go through the transplant before going any further. I have a friend going through a similiar battle and after seeing what this poor kid is dealing with, it sounds like your Mom will have her blasts go back up sooner than later. I would strongly suggest calling these 2 centers or any other that you may be familiar with to get this process started ASAP.



#3 cpsn0000

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Posted 16 October 2011 - 09:26 PM

I have CML as well, even though I never had any blast cells, I couldn't stay on any of the TKI's because of severe mylosuppression and I am now in a major molecular response thanks to getting a stem cell. I was 100% PH+ like many of us but my body was unable to produce enough good cells to keep up with the CML cells. I was fortunate that it never went any further so please make sure you get on top of this as quickly as possible.



#4 fransdaughter

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Posted 17 October 2011 - 07:03 AM

Thank you so much for your advice!! We are meeting with one of her oncologists tomorrow and I am going to insist on a second opinion from another transplant doctor.  I will let you know how it goes!!

Mary Ann



#5 Trey

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Posted 17 October 2011 - 09:57 AM

A second opinion is useful to get more information.  The reason for the concern is that the intensive chemo (much harsher than what she has been given so far) and radiation during the BMT process can damage organs, especially the liver and kidneys.  And kidneys that start out in a weakened state are more vulnerable.  There is good reason for concern, and the Onc is not being unreasonable -- but that does not mean the Onc is right or wrong.  You can certainly find a place that will do a transplant if you look  hard enough, and maybe that is the best choice, but maybe it is not.  There is a fair amount of uncertainty, so it is a difficult decision.

http://www.livestron...r-chemotherapy/



#6 CallMeLucky

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Posted 17 October 2011 - 03:41 PM

What is the definition of healthier?  How long are they proposing to wait?  What is she doing in the mean time - is she back on Tasigna?

It is very odd that someone would go from a full remission to Blast crisis after 3 years.  Are there any other details you can share about your mother's case?  When you say full remission are you referring to undetectable PCR tests or negative bone marrow/FISH tests?  How were her blood counts tracking?

I'm sure you know, MSKCC is an exceptional cancer hospital and transplant center.  That's not to say they are not wrong, but it does sound like there is risk in pushing too fast with a tranplant for someone who is not in good health otherwise.  As was already mentioned, the transplant process is very taxing and could lead to other problems so it is best if her kidney's are up to it.

Wishing you and your mom the best....


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%
 

 


#7 Susan61

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Posted 17 October 2011 - 04:52 PM

Hi Lucky:  I was thinking the same thing after reading the post.  What was meant by full remission for 3 years, and then having blasts?  I just hope everything goes right, and the best doctor figures out what to do.

Susan



#8 fransdaughter

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Posted 17 October 2011 - 05:32 PM

Hi-- Thanks everyone for your suggestions. We are meeting with her oncologist tomorrow to clarify what is going on.

She had reached cellular, cytogenic and molecular remission within 2 years of diagnosis. At 2 years, her molecular number went up so they raised her 600 of gleevac which put her back into the molecular remission. She remained on the 600 of gleevac for the next year. She had gone into her dr in May of 2011 and was still in all 3 remissions. By July 27th she was in blast crisis.

I do want to say that every doctor we have since seen says this is VERY rare to progress to that stage so quickly. I do not want to scare anyone here.  The doctors at Sloan  say that with the advent of gleevac they rarely see people in blast cisis. WHat I would recommend to anyone here, even if you are in remsission, is having a bone marrow biopsy annually is probably a good idea.  Probably if a BMB had been done they would have caught the change before it hit crisis stage for my Mom.   Mary Ann



#9 Trey

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Posted 17 October 2011 - 05:42 PM

We are all interested in learning from her experience.  Any other info such as her current BMB/FISH/PCR test results would be of interest.  Also whether she had a Kinase Mutation Test done, what her WBC did, any additional chromosome translocations, whether the blasts are primarily myeloid or lymphoid (mimicing AML or ALL) and how the blast crisis was discovered.  Sorry for the questions.  Just wanting to learn by her experience.  Thanks.



#10 Susan61

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Posted 17 October 2011 - 05:51 PM

Hi Mary Ann:  My prayer list is getting bigger each day, and I will pray that you get some concrete answers to all of this when you meet with the Oncologist tomorrow.  I really feel for what your mother is going through.  I still get very anxious over every blood test I get.  I just went for blood work today.  How was your mothers PCR tests running.  Once I got to a cytogenetic remission, they started to test me through the PCR tests every 3 months, and then to 6 months.

I am on 400mg. of Gleevec since 2000.

Susan



#11 fransdaughter

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Posted 17 October 2011 - 08:57 PM

I can ask her tomorrow some of the specific blood count numbers.

I do know that the blast are mostly myeloid, and that she does not have a mutation. Her white count was at 21 when she was admitted, and her blasts were at 50%.

She had had only one BMB when she first diagnosed, which did not show any blasts.

We knew something was wrong because she was getting huge bruises, horrendous headaches and nausea. It turns out that because of the blast crisis her kidneys were failing and that was causing the headaches and nausea.

She is currently on Tasigna, which has had the least side effects for her.

I am happy to be any help.



#12 valiantchong

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Posted 18 October 2011 - 05:53 AM

Hi,

I hope you will do well on Tasigna and get to full remission soon.

Base on my understanding after 2 years of CMR and progress to blast within 2 months is not heard. I was wondering what is her PCR measurement trend, and what is the early sign.

I am asking as I wish to know what is the sign of measurement that will tell us early progression. Per my understanding early progression will show in PCR increment by 1 - 2 log (10 time to 100 times increased), which in turn will eventually increase in WBC and differentiation of blast cells will increase more than 5%, these are the early sign. 

The case of progression within 2 months is almost unknown.

I wish all the best to your mom and may she get over this and recover soon...






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