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MDS Myelodysplastic syndromes

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  #26  
Old Sat Jun 27, 2009, 12:15 PM
Bill F Bill F is offline
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Hi Vera,

Your results are fantastic, although I can't comprehend how it was that your counts weren't hammered during high-dose chemo. I concur with Birgitta-A; sure would like to know what your doctors might say about that. Low-dose chemo really lowered my counts following the five day cycles. Doubt many can say they went from RAEB-II to RA following any treatment. Looks like you may beat this MDS yet. Wishing you the best!

Hi Amy,

There used to be an age cutoff for consideration of a bone marrow transplant - no longer. Now the go no-go decision rests on the health of the transplant candidate. How many and how serious are the comorbidities comes into play, that is what is the prevailing health of the individual overall. Does he or she have diabetes, heart disease, COPD or such? It's these kind of things the doctor has to weigh.

Similarly there used to be a numerical value that was used for deciding when to transfuse a patient with red blood cells as I mentioned in a post above (not that each and every doctor subscribed to that value). Anyway I just read an interesting article, where Dr Shiffer, professor of medicine and oncology at Wayne State University in Detroit, presented a different approach to dealing with transfusion "trigger" decisions. He recommended that the doctor and patient work together to determine the HGB at which to transfuse based on avoiding waiting until the patient experiences symptoms.
That makes a lot of sense to me. If my HGB falls again, I'll certainly strive to get transfused prior to experiencing symptoms. The point is why go from feeling good to bad when with a little planning you can maintain the status where you feel good. The link to this article is below, but you'll probably have to register at OncologyStat to view it:

http://www.oncologystat.com/news-and...plasia_US.html
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Bill F, 74, MDS RA '05, procrit, aranesp, revlimid, no help; 87 transfusions, 4 cycles dacogen, then transfusion free ~2yrs, 4% blasts
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  #27  
Old Sun Jun 28, 2009, 03:07 PM
amykdb amykdb is offline
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That's amazing, Vera! How are you feeling??

I gave my mom your list of things to bring for her month long stay in the hospital for her chemo. Any other advice now that you're there?
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  #28  
Old Sun Jun 28, 2009, 10:09 PM
Vera W Vera W is offline
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Transplant

Hi guys, my counts are still good, the doctor said this morning that I don't have to be at 0 levels because they would drop after i get the new cells He said the donor cells would grow with the growth hormones not mine. I still have nausea and I am tired but nothing dire!!
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #29  
Old Wed Jul 29, 2009, 01:03 PM
amykdb amykdb is offline
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Update

Its been a while since I posted, so I wanted to fill all of you in on what's going on. My mom was admitted to the hospital on 6/30. After a battery of tests, they found her to be in excellent health other than the MDS and started her on chemo on 7/2. They gave her chemo on 7/2 and 7/7 and said that it will take 28 days for her counts to recover. She has had countless platelets and transfusions over the past month. The first week was really difficult--they could not control her pain and she could not longer take vicadin and ibuphropen since they are blood thinners. They tried morphine, no luck. They moved her up to delatiod (sp?) and that helped some. They then put her on lidicane and phetranol patches which just moved the pain away from where the patches were placed. Here's the interesting thing... after a few days of chemo, her pain lessened significantly and now it is gone. They say her uncotrollable pain was acutally related to the MDS.

So, now we wait for her counts to come back up. Her WBC is .3 and her platelets are at 21. Based on the schedule, they should start improving tomorrow. Once her counts have stabilized, she'll go home for a week, maybe 2. THEN, she goes in for a bone marrow transplant!

They found a 28 year-old female that's a 10/10 HLA match!! Mom mom is scheduled for day -8 on Aug. 19th and her stem cell infusion on Aug. 27th. It's amazing how quickly they have managed to pull all of this together.

I'll send an update again soon.

I hope all of you are well. My thoughts and prayers are with all of you!

Best,
Amy
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daughter of Judy, 65 years-old, DX 2009 hypocellular MDS, multiple chromosome abnormalities, BMT scheduled for August 2009
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  #30  
Old Wed Jul 29, 2009, 03:16 PM
Neil Cuadra Neil Cuadra is offline
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Hi Amy. Thanks for bringing us up to date.

The pain medication that helped your mom was probably "dilaudid", also called hydromorphone. It's an opiate pain reliever and worked for my wife when she was found to be allergic to morphine. Your mom's pain sounded awful, and I'm glad it's gone now.

I'm surprised that they gave you such an exact prediction about when her counts would recover. Perhaps they were giving you an estimate based on averages, but since they said her counts would rise this week let's hold them to their promise!

How wonderful that they found a matched donor. Congratulations! If you have questions about preparing for the transplant, you might look through the threads in the Transplants forum or start your own thread there.
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  #31  
Old Mon Aug 3, 2009, 11:45 PM
Steve Kessler Steve Kessler is offline
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Smile Blood count variability

Blood counts depend a lot on who's reading them and what part of the slide they are looking at. You should probably accept the idea of plus or minus 10% on any lab results. That applies to BMB's also.

I'm almost 70, diagnosed 8 1/2 yrs ago with RAEB-1 which became RAEB-2 fairly quickly. I decided not to undergo SCT because of age and lack of physical conditioning. I was given 2-2 1/2 years and I'm still going strong. The life expectation numbers date from 1999, before the introdution of the new wonder drugs. Expectations are much better now.

I've had about 120 units of PRBCs and continue to need TX's about monthly. I take Exjade to cleanse my system of the iron and have been able to keep iron levels low, serum ferritin below 1000.

I'm on revlimid & vidaza and my excess blasts have dropped from 11% last August to under 4% now.

Glad your mom is getting the best care. Don't count her out for a long time !
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Steve Kessler,Age 71, Dx 3/2001, Currently AML converted from MDS, 5q-, 11q23, Negative response to Aranesp, Revlimid. Partial response to Vidaza in the past. On a study using ON1910.NA, counts too low to go to Stanford on schedule.
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