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  #1  
Old Mon Apr 16, 2018, 09:40 PM
bendapk bendapk is offline
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Location: Springhill Fl
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Hi, I was diagnosed with MDS back in July after what seemed like a small boil on my side turned into a huge lesion. Went to hospital to get antibiotics and ended up staying for 7 days. WBC 0.6 PLT 90 RBC was low HGB was low and I was anemic. BMB confirmed MDS/low risk/currently watch and wait. No blasts. My WBC has been fluctuating between 1.5 and 2.1 since September. Plt between 98 and 137 HGB is good now at 12.6 and RBC is 4.34. My Dr. has been trying to get me to take the nuepogen but I refuse right now. My ANC is around a 1000 right now. If it goes 5 or below I will take it. He gets red in the face when I refuse. He's a bully in my opinion. I took the shots back in Oct. and it did not raise the counts that much plus the shots made me very sick with high fever, chills and muscle aches. Anyway I have been doing a lot of reading and decided to Start taking Shark liver oil and also Myrrh essential oil along with COq10. I started taking this 2 weeks ago and my WBC jumped to 2.5 from 1.8 and my PLT went from 137 to 150 (normal). Highest ever since I was diagnosed. I will be interested to see the results when I go back in 3 weeks but these numbers really shocked me today. Also ANC went from 700 to 1000. I know this is not a cure but If I can keep it stable for a little while I will be happy. This disease is very scary. Prayers to everyone with this disease.

Brenda
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Brenda age 55 mother of 4 diagnosed MDS 7/28/2017/currently low risk/watch and wait.
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  #2  
Old Tue Jun 5, 2018, 01:23 AM
Neil Cuadra Neil Cuadra is offline
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Brenda,

Have you made any progress in working with your doctor?

If not, you may need to switch to a doctor who you can partner with, who can listen to your honest opinions without disapproval, and who can offer you advice based on his or her experience while letting you make the ultimate treatment decisions.
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  #3  
Old Tue Jun 5, 2018, 10:17 PM
JoMac53 JoMac53 is offline
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Hi Brenda, and welcome. I sent you a private message.
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Joanne, 64F; Dx Pancytopenia May '17; Primary MDS RAEB-1 Aug '17. Currenly weekly CBC, Granix shot if ANC below 1.0
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  #4  
Old Wed Jun 6, 2018, 05:46 PM
bendapk bendapk is offline
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Join Date: Sep 2017
Location: Springhill Fl
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Hi Neal,

I have just recently moved and have the Dr. back that diagnosed me. He is good Dr. and does not judge my opinion or try to Bullie me into shots I don't want.. Very happy to be back with him.

Brenda
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Brenda age 55 mother of 4 diagnosed MDS 7/28/2017/currently low risk/watch and wait.
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  #5  
Old Wed Jun 6, 2018, 08:41 PM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
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Hi Brenda - as you will see from my signature block I've been on watch and wait for over 6 years now. I was offered chemo when my blasts dropped and I was re-diagnosed as MDS RCMD, but chose not to. It's worked out well for me. As long as you are being monitored regularly, watch and wait is fine. Don't let infections take hold on you - deal with wounds and sore throats promptly and you should be able to avoid getting sick. I assume you have had your globulins checked? If they are low that will contribute to your susceptibility to infections.

All the best!
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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. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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