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MDS Myelodysplastic syndromes

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  #1  
Old Sat Aug 31, 2013, 10:09 PM
Honeybun Honeybun is offline
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Vegetarian issues with MDS

Hello

I have been vegetarian since I was 18. I have read some posts that salads and fruit etc that cannot be peeled should be avoided. What other issues may I encounter or is there anyone else that is a vegetarian that had issues.

I remember when I was diagnosed the first thought when they explained the red cells was to have a big steak. I know that will not fix it lol. But I expected it, as some drs have suggested eating meat again because of my chronic aneamia before my diagnosis.

I will miss having salads and fresh juice well when the time comes, I am not giving them up now!

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #2  
Old Sat Aug 31, 2013, 10:27 PM
Chirley Chirley is offline
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Also be careful with undercooked eggs and soft cheeses.
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #3  
Old Sat Aug 31, 2013, 10:30 PM
Honeybun Honeybun is offline
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noooooooooooooooo not the cheese!
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #4  
Old Mon Sep 2, 2013, 06:00 AM
Cheryl C Cheryl C is offline
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Dear Honey - I am 99% vegetarian and non-dairy. Have been all my life and continuing since diagnosed with MDS. Occasionally eat fish and probably 2 eggs a week max, so I'm close to being vegan. The research I've read is that meat-eaters are just as likely to be anaemic as vegetarians.

I eat lots of raw fruits and vegies - I just wash them carefully. I don't even peel unless the skin isn't edible. You can buy really good non-toxic vegie washes. During the transplant process it's a different story though - when I was preparing for transplant I resolved to do as I was told except eat red meat - I don't think I could ever do that!

All the very best! I am praying for all the transplant people on the forum. It's a huge decision to make.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #5  
Old Mon Sep 2, 2013, 12:28 PM
Honeybun Honeybun is offline
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Cheryl I can't imagine eating a steak etc either. I totally forgot there are vege washes. Where can you buy them? I do remember reading something about a home made vege wash. I think vinegar was involved. Off to google.
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #6  
Old Mon Sep 2, 2013, 12:36 PM
Honeybun Honeybun is offline
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Here's what I found.

If you want to make sure that your veggies are really clean, and free of as many pesticides as possible. Try this easy washing system:

The Spray: Grab a small sprayer (around 16 -ounces), and fill with water. Add 2tbsp lemon juice and 1 tbsp baking soda. Shake gently before use. Spray over your fruits and veggies. Leave for 10 minutes, and then wipe or rinse off.

The Soak: This is great as a second step, but also perfect for leafy greens such as kale, spinach, lettuce etc. Fill a sink with cold water. Add 1 cup white vinegar and 1/4 cup salt. Swish around. Toss in your veggies. Leave to soak for 20 minutes. Rinse thoroughly, and you are good to go.

Tip: Although you should peel the skins of most fruits, you need to thoroughly clean fruits like berries. I would try “The Soak” for all your berries, but as they are delicate, just soak for 10 minutes. Don’t worry, the vinegar smell/taste will be non-existent after they have been gently rinsed.
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #7  
Old Tue Sep 3, 2013, 07:58 AM
Marlene Marlene is offline
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don't use the sink

I soaked vegetable and fruits in vinegar and water but NOT in the sink. The sink is breeding ground for germs. Use a soup pot or some other large container.

You can also use a 3% hydrogen peroxide + vinegar solution.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #8  
Old Tue Sep 3, 2013, 08:11 AM
Cheryl C Cheryl C is offline
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I was thinking of Amway Veggie Wash, but your solution is easy and much cheaper too!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #9  
Old Tue Sep 3, 2013, 08:22 AM
Honeybun Honeybun is offline
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Yes Marlene I agree. I thought most would amend the sink and water bit. But probably good to point it out.

Wow Amway is still around!
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #10  
Old Tue Sep 3, 2013, 06:34 PM
Chirley Chirley is offline
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When I worked Infection Management we took random swabs. The flora that was found living under the sink plug and the outlet was horrendous.

The next worse were the elevator buttons.
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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