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Trey. . .do you know anything about MDS?


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#1 Marnie

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Posted 09 July 2016 - 08:20 PM

Had a friend diagnosed.  Just wondering if you know anything more than what I've learned through online research.

 



#2 Trey

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Posted 10 July 2016 - 10:01 AM

If you can tell me the subtype I can provide some information.  They include RA, RARS, RAES, RAES-T, and even CMML is thrown in and sometimes called MDS.  Also need to know if there are chromosome mutations.  MDS treatment and prognosis differs by subtype. 

 

Did your friend have excessive exposure to aerosol volatiles, engine emissions, or such?  Sometimes a cause can be guessed at, but often the cause is not known or simply a genetic accident as with CML.



#3 Marnie

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Posted 10 July 2016 - 05:02 PM

They are being pretty closed-mouthed about info, so I don't know the subtype.  I'll see if I can find out.  She had none of the exposures or risk factors associated with it.

 

She's a very young 70 or so, probably too old for a transplant.  My impression is that she is not planning on doing any treatment.  She was in the hospital for 18 days while they tried to figure out what was wrong.  Temperature topped out at 107 a few days ago. 

 

I'll let you know if I can get more details.

Thanks.



#4 Trey

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Posted 11 July 2016 - 10:20 AM

The fevers are from opportunistic infections, and often cannot be identified.  Antibiotics are recommended.  Chemotherapy can help extend the life expectancy and reduce the persistent fevers for some patients.  There are various chemo protocols based on subtype.  The chemo is rarely a cure, and has side effects which can be severe, but can provide some relief from symptoms, especially low dose oral chemo if it applies.  But again, without knowing subtype there is not much else I can provide.

 

http://www.cancer.ne...eatment-options



#5 Marnie

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Posted 11 July 2016 - 08:46 PM

Not sure if this is accurate, but what I've been told is that at this point the MDS has not yet developed into a sub-type that is identifiable, so they are not sure of which course of treatment would be best.  Does that sound possible to you?  They are at the University Hospital (Aurora, CO), and claim that they have an MDS expert working on it, along with a number of research doctors.



#6 Trey

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Posted 12 July 2016 - 02:12 PM

If she is having 107 degree fevers, then her immunity is significantly affected so they should be able to sub-type it.  I assume she has a "high" blast count (over 5%)?  The exception to being able to sub-type is if there is too few mutated cells (as in a CML BMB which can be negative if patient is CCyR or too early to diagnose) or some MDS cannot be sub-typed if it does not have genetic mutations, although most do have mutations.  Then it could be MDS or just early AML leukemia. 

 

She should have a BMB and also an MDS PCR:

http://www.sabioscie....html#howitwork

Sometimes it is called a Sequencing Assay instead of PCR:

http://education.que....com/faq/FAQ102

 

Ask if she had the PCR/Sequencing Assay done.



#7 Marnie

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Posted 12 July 2016 - 06:24 PM

Will do.  She's had 4 BMBs, but I don't know about the PCR/Seqencing Assay.  She had been home from the hospital, and just ended up back there a few hours ago because her white count has dropped below 1000 again (at the lowest point it was something like 200).

 

m



#8 CarrieR

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Posted 13 July 2016 - 10:29 AM

I'll chime in here if you don't mind. Had she been treated for any other cancers in the past? Sometimes you can develop MDS from prior chemo and/or radiation. My hubby has treatment related MDS from (now AML) from lymphoma treatment

#9 Marnie

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Posted 13 July 2016 - 10:08 PM

Nope. . .no risk factors, no chemical exposure, no chemo from previous cancer.  Nothing, nada, zip.  She was supposed to get DNA cytopathology results yesterday, so perhaps they know a little more today.  I haven't heard from them, and am reluctant to push for information.



#10 Marnie

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Posted 14 July 2016 - 01:23 PM

Carrie. . .How is your husband doing? 



#11 Marnie

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Posted 28 July 2016 - 03:28 PM

Ok, Trey . . .I have more information.  She has RAEB-2/RAEB-T (on their report it uses the letter "T", but they think that stands for "2", which is what I've seen).  She currently has 10% blasts.  She said they need to get the blasts down to 5% before considering transplant.

 

They haven't yet made a decision about what to do, but they are considering using the local hospital (very small, no specialists) for chemo--Azacitidine.  Another option, is to do a trial in Denver, which uses the same chemo followed by vadastuximab talirine (SGN-CD33A).  Currently, she is not interested in that option because it would be spending the week of chemo and experimental drug in Denver, which is a 3 hour drive, also difficult to do in the winter because you have to go over some mountain passes, and they can be treacherous (or closed) during winter storms.  She doesn't really know the duration of treatment for either option.  Seems to me that she needs to get more info from the MDS specialist that she has seen.  Right now, she seems to be in limbo and is doing nothing.

 

Apparently it was the neupogen that sent her temperature to 107 degrees.  The doctor who gave it to her had never seen a reaction like hers.  When he took her off it and she came home, her temp came down. 

 

Anyway. . .the little reading that I've done on MDS corresponds to the info they have given me.  It looks like she has a very high likelihood of developing AML.  She is 74, so probably just in the age window for transplant.

 

Any thoughts?






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