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MDS Myelodysplastic syndromes

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  #1  
Old Tue Jan 5, 2016, 08:18 PM
traceyn11 traceyn11 is offline
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Help with Test Results

So my pretests for the sct are coming in and I was hoping someone could help me understand them. Most of the results are in the normal range or just a little or low, but these stand out, the last number is my value.

LDH <=180 IU/L 704
TRIGLYCERIDE <=149 mg/dL 261
FERRITIN 13 - 126 ng/mL 2896

Even though my ferritin is incredibly high, my iron, iron binding capacity and iron sat were all in normal range. Also back in Sept when I was originally scheduled for my transplant was the last time these were done and while they were high, they were nowhere near this high:

LDH was 211
TRIGLYCERIDE was 99
FERRITIN was 307

Also my wbc is really going up fast. Originally back in March 14 it was around 2.3, then after Vidaza, it hovered around 1.3 from May until November. Now after my surgery in Nov., it keeps rising. Today I looked at it with my primary dr. and it was at 8.2 on 12/29. My primary thought that was good, but I know it's not. Unfortunately, I don't know the ANC.

Any help with understanding the numbers would be much appreciated. I know several of you have lots of experience with understanding test results.

Thanks,
Tracey
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #2  
Old Wed Jan 6, 2016, 12:06 PM
PaulS PaulS is offline
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Hi Tracey - Can you ask your transplant doctor or hematologist these questions? Have you asked if he/she uses email - my doctors encourage me to email them and are generally pretty responsive depending on the urgency of the question - but they always get back to me. Does your doctor work with a physicians's assistant (PA) or nurse practitioner (NP) - my doctors also work with a PA whom I am also able to email or call and are generally very knowledgeable or will ask the Dr. if they don't know the answer - but they also will respond very promptly if the doctor doesn't or can't. Are you're having trouble communicating with your doctor? - I suggest you call and speak with him/her or find out the best way to communicate. Ideally you should be able to contact them or at least their PA's directly and easily -

Are your hgb and platelets normal? When was your last BMB? I had a BMB very close to the transplant date - the results of the BMB was considered by the transplant doctor in deciding on the pre- transplant conditioning. They also did the labs and other tests - They would not rely on a BMB from another hospital.

Do you have an appointment scheduled to see the transplant doctor? Before the transplant I was going in once a week for tests and to see the transplant doctor - he'd answer any questions I had and we'd discuss the implications of the recent tests on the transplant protocol - The transplant doctor decided what pre-transplant conditioning he was going to use based on all my tests, especially cardiac and BMB. Seems like you should have an appointment with the transplant doctor pretty soon. They also had a transplant coordinator who was a nurse available to answer questions - or at least facilitate communications.

Sorry I can't answer your questions about the meaning of the test results - but i think you really need to get the answers from the transplant doctor - the question is really what do they mean in regards to the transplant - does it change anything as far as conditioning or transplant protocols.

Good luck
p.
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #3  
Old Wed Jan 6, 2016, 03:31 PM
traceyn11 traceyn11 is offline
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Hi Paul,
I was thinking about trying to get an appt with my hematologist to talk about the test results including the bmb which I just had done today. We see the transplant dr next week on the 13th. I don't really like the nurse transplant coordinator we have. She is never very forthcoming and is always vague in her answers. But the social worker is much nicer. So I am going to try local to find out what answers I can get from the hematologist.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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Old Wed Jan 6, 2016, 09:41 PM
PaulS PaulS is offline
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Sounds like a good plan. Glad you like the social worker -
-When you see the transplant doctor ask him the best way to communicate any questions - maybe you can email if necessary. Hopefully he'll answer all your questions when you see him.

Will your husband/family be staying in the hotel during the time you're in the hospital?
Hang in there!

Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #5  
Old Wed Jan 6, 2016, 11:46 PM
traceyn11 traceyn11 is offline
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Hi Paul,
The hematologist called and wants to meet with us tomorrow afternoon. I am trying to be positive, but I don' think it's going to be good news. I also had to get platelets again because I was at 8 today. At least I can ask him all the questions I have.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #6  
Old Thu Jan 7, 2016, 02:36 AM
Wanderer Wanderer is offline
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Tracey

I hate to say this, but I think the elevated WBC (so far above your baseline) and LDH may be an indication that you're evolving to AML. Your medical team may want to change the pre-transplant conditioning.

Best Wishes.
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  #7  
Old Thu Jan 7, 2016, 02:40 AM
traceyn11 traceyn11 is offline
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Hi Wanderer.
Yes, that is exactly what I was thinking.

Thank you.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #8  
Old Thu Jan 7, 2016, 05:26 AM
PaulS PaulS is offline
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Just a little more drama for the pre-transplant experience - make the book you write that much more exciting. Your in my thoughts and prayers - let us know how it goes.

Stay strong - remember - you are sooo badass!

paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #9  
Old Thu Jan 7, 2016, 11:17 AM
traceyn11 traceyn11 is offline
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Quote:
Originally Posted by PaulS View Post
Just a little more drama for the pre-transplant experience - make the book you write that much more exciting. Your in my thoughts and prayers - let us know how it goes.

Stay strong - remember - you are sooo badass!

paul
Thanks for making me smile Paul!

I will post later what the dr. said.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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