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MDS Myelodysplastic syndromes

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  #1  
Old Wed Jun 10, 2015, 04:55 PM
Bossywife Bossywife is offline
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Thumbs up Blood Count Variations?

So my husband's blood counts are heading upwards and he hasn't started treatment. The only things that have changed are:

1. He started a new Diabetes drug a month ago which finally has his sugars in the normal range.

2. I started him on Folic Acid, B12, Cod Liver Oil, and wheat grass.

3. Cut out about 95% of wheat from his diet.

Platelets went from 44 to 75, which is the highest they have been since 2008. But I read somewhere on this forum where blood counts can vary week to week.

Any thoughts?
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Old Wed Jun 10, 2015, 06:04 PM
bailie bailie is offline
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My platelets went from 67 to 258 in 11 days during the last two weeks.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Wed Jun 10, 2015, 08:02 PM
maggiemag maggiemag is offline
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Hi Bossy! It's good that they went up, but probably not statistically significant. I have had my platelets vary that much when they re-ran my CBC from the SAME sample of blood. It's kind of like your BP which can vary by 10-15 points when re-taken 5 minutes later. But let's just hope his upward trend continues!
Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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  #4  
Old Thu Jun 11, 2015, 09:45 AM
italianburrito italianburrito is offline
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Quote:
Originally Posted by Bossywife View Post
So my husband's blood counts are heading upwards and he hasn't started treatment. The only things that have changed are:

1. He started a new Diabetes drug a month ago which finally has his sugars in the normal range.

2. I started him on Folic Acid, B12, Cod Liver Oil, and wheat grass.

3. Cut out about 95% of wheat from his diet.

Platelets went from 44 to 75, which is the highest they have been since 2008. But I read somewhere on this forum where blood counts can vary week to week.

Any thoughts?

Did the doctor suggest him taking all those supplements? Have you thought about adding Vit. D as well?
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Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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Old Thu Jun 11, 2015, 11:59 AM
Bossywife Bossywife is offline
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No, the doctors did not suggest, but I asked first and they said it was fine, the one doctor (Internist) said "oh good, good" when I told him I wanted to give him Folic Acid and B12.

I also have Vita D drops there, but he insists he gets enough from the sun. /sigh I encourage him to take them when I can. Its not as easy as putting the pills in his pill case.

The Gluten free was kind of my own decision. He has always struggled with eating bread and feeling awful afterwards. He had stomach issues and was constantly running to the washroom. He was tested for Celiac a few years ago, and told me the test was fine. But then recently he told me that his Family Doctor told him that the test wasn't done properly, so she didn't know for sure if he had it. (Apparently its a two part test). He does so much better without Gluten. His diabetes becomes much more manageable as well.

I know there are lots of people who ridicule people who cut back Gluten, and I do know of many people who can eat Gluten with no issues. But I think putting something in your body that causes inflammation can't be a good thing, so you have to listen to it. Even if you aren't Celiac.
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Old Thu Jun 11, 2015, 12:10 PM
italianburrito italianburrito is offline
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Originally Posted by Bossywife View Post
No, the doctors did not suggest, but I asked first and they said it was fine, the one doctor (Internist) said "oh good, good" when I told him I wanted to give him Folic Acid and B12.

I also have Vita D drops there, but he insists he gets enough from the sun. /sigh I encourage him to take them when I can. Its not as easy as putting the pills in his pill case.

The Gluten free was kind of my own decision. He has always struggled with eating bread and feeling awful afterwards. He had stomach issues and was constantly running to the washroom. He was tested for Celiac a few years ago, and told me the test was fine. But then recently he told me that his Family Doctor told him that the test wasn't done properly, so she didn't know for sure if he had it. (Apparently its a two part test). He does so much better without Gluten. His diabetes becomes much more manageable as well.

I know there are lots of people who ridicule people who cut back Gluten, and I do know of many people who can eat Gluten with no issues. But I think putting something in your body that causes inflammation can't be a good thing, so you have to listen to it. Even if you aren't Celiac.

I agree, I think a healthy diet is key to a better recovery. I have told my dad this but he is stuck on his turkey sandwhiches and lots of meats and bread. I guess old habits are hard to give up... sigh
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Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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