Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Apr 16, 2018, 09:40 PM
bendapk bendapk is offline
Member
 
Join Date: Sep 2017
Location: Springhill Fl
Posts: 5
New member

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
__________________
Brenda age 56 mother of 4 diagnosed MDS 7/28/2017/currently low risk/watch and wait.
Reply With Quote
  #2  
Old Tue Jun 5, 2018, 01:23 AM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
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.
__________________
Founder of Marrowforums and caregiver for my wife
Reply With Quote
  #3  
Old Tue Jun 5, 2018, 10:17 PM
JoMac53 JoMac53 is offline
Member
 
Join Date: Sep 2017
Posts: 75
Private message

Hi Brenda, and welcome. I sent you a private message.
__________________
Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
Reply With Quote
  #4  
Old Wed Jun 6, 2018, 05:46 PM
bendapk bendapk is offline
Member
 
Join Date: Sep 2017
Location: Springhill Fl
Posts: 5
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
__________________
Brenda age 56 mother of 4 diagnosed MDS 7/28/2017/currently low risk/watch and wait.
Reply With Quote
  #5  
Old Wed Jun 6, 2018, 08:41 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
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!
__________________
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
New Member Welcome Marrowforums Tell Your Story 185 Mon Apr 4, 2022 11:53 AM
New Member Profile: Evan MacNeil Marrowforums Site Announcements 0 Fri Nov 18, 2011 12:34 PM
New Member Profile: Alyse Booth Marrowforums Site Announcements 3 Wed Jun 1, 2011 07:37 PM
New Member Profile: Kirby Stone Marrowforums Site Announcements 0 Tue Jul 28, 2009 08:57 PM
New Member Profile: Birgitta Alexius Marrowforums Site Announcements 0 Sun May 10, 2009 04:39 PM


All times are GMT -4. The time now is 11:53 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org