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MDS Myelodysplastic syndromes

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  #176  
Old Thu Jan 21, 2021, 12:34 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
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AML relapsed

I have been told not to have the Covid vaccine - at this early stage anyway. We are nowhere near any hot spots.
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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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  #177  
Old Thu Jan 21, 2021, 04:51 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
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Wink

Cheryl,
I supposed it depends on the doctor, they know us a bit more, so asking them about the vaccine is the best way.
I'm glad you are not in the middle of the "hotspots" as I am now.
Please take care.
Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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  #178  
Old Thu Feb 18, 2021, 04:11 AM
Meri T. Meri T. is offline
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Location: Tokyo, Japan
Posts: 167
Secondary cancer

My doctor suggested I test for other cancers, so I did, I tested for Lung, breast, uterine, and colon cancer. I couldn't stomach the valium so I didn't do the stomach cancer test. Then bone level tests and HepB and HepC were good. Just a bit anxious awaiting the results.

John, I hope you are alright, I heard Dallas was not doing well in this freeze. Keep safe.

Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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  #179  
Old Sat Feb 20, 2021, 09:34 AM
John T John T is offline
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Join Date: Jan 2018
Location: North Texas
Posts: 12
Quote:
Originally Posted by Meri T. View Post
My doctor suggested I test for other cancers, so I did, I tested for Lung, breast, uterine, and colon cancer. I couldn't stomach the valium so I didn't do the stomach cancer test. Then bone level tests and HepB and HepC were good. Just a bit anxious awaiting the results.

John, I hope you are alright, I heard Dallas was not doing well in this freeze. Keep safe.

Meri
I am doing ok, power stayed on during most of the great Texas blackout of 2021. I also have solar panels, backup batteries, and a generator in case of power loss.

I was cleared by my transplant team for the Covid vaccine and am scheduled to receive my first dose this afternoon.

Where are you staying these days?
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  #180  
Old Sun Mar 14, 2021, 06:24 PM
John T John T is offline
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Join Date: Jan 2018
Location: North Texas
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Final Pfizer Vaccine Received Yesterday

Received my final Pfizer vaccine yesterday exactly 3 weeks after receiving the first dose, nothing dramatic in the way of side effects.
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MDS RAEB-1 since early 2017
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  #181  
Old Mon Mar 22, 2021, 12:18 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
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Hello John,
Good job on the vaccines! I am very sure the shots will give you that peace of mind while in public.

I am in Tokyo now, I would not miss the Sakura season for anything. I used to get hay fever with all the pollen during this season, but ever since transplant, my hay fever has gone, totally gone.

Good news everyone, results for all those secondary cancer tests came out good : colon, cervical, lung, breasts, hepB and hepC, bones over average.
No cervical cancer, though vagina cells are abnormal. Most of my girl friends all have the same results after transplant, so I'm not worried.

I will do a blood test next month, I haven't had one since last Summer, and will update the results for you all.
Take care everyone.
Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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  #182  
Old Wed Apr 14, 2021, 01:42 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 167
4 years post transplant, doing well

Hello everyone,
It's been 4 years stem cell transplant, and the counts are great. Showing off a bit here :
WBC 5.7
RBC 4.12
Platelets 174
Hemoglobin 13.3
The segs, lymphs, and other AST ALT numbers are good too.

Every person with MDS is different, so what is good for me might not be for everyone, but I have never regretted having a transplant.
Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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  #183  
Old Wed Apr 14, 2021, 02:50 PM
Rarity Rarity is offline
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Join Date: Sep 2017
Location: USA
Posts: 67
Congratulations Meri! You certainly earned the right to show off not a little bit... but a whole bunch! So proud of you! Keep up the good work! Keeping you in prayers as always.

Take Care,
Rarity
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