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 Sat Jan 4, 2014, 12:44 AM
jcbydesign jcbydesign is offline
Member
 
Join Date: Dec 2013
Location: Portland, Oregon
Posts: 2
Unhappy Just diagnosed!

My hematologist told me today that I have MDS 5q syndrome with 5% blasts. Hemoglobin 8.6 which is down from two weeks ago. The plan is to redo CBC in two weeks but she thinks I will need a blood transfusion in a month. After second or third transfusion will put me on Revlimid 10mg.
I have been very calm the since the Bone Marrow test but today, on the way home, it just hit me hard. The sudden realization that I will be at the mercy of this progressive cancer generated so many different feelings I just broke down and cried.
__________________
My name is Jane and I was diagnosed with Myelodysplastic Syndrome on New Years Eve.
Reply With Quote
  #2  
Old Sat Jan 4, 2014, 02:16 AM
Tii Tii is offline
Member
 
Join Date: Nov 2013
Location: Los Angeles, CA
Posts: 22
Hello

Well you are in the right place to vent, write and read about stuff that we go through.

I was diagnosed with MDS 08/12 and went through a bone marrow transplant in 12/12. Everything happened just so fast! But I have cried the desperate tears, I have cried the sad tears and I have cried the happy tears. We know how you feel and its okay to cry, its good to cry. But right now you can't let fear take over.

Everything is so new that it can totally be overwhelming, but you need to stay positive, have a network of people to talk to, write down questions for your appointments and do not google the internet for answers. Not sure where you are located but there are communities with support groups, there are blood conferences coming up to meet with others, there are phone lines to talk with someone, you are not alone.

But meanwhile, try to maintain a normal functioning life (I was working until the day before I got admitted to the hospital for my BMT), eat healthy, exercise and keep a journal of bruises, red dots, bleeding gums etc.

Hang in there!

Tii - 37 yrs, MDS/t-cell leukemia, BMT 12/12 (sister donor)
Reply With Quote
  #3  
Old Sat Jan 4, 2014, 12:02 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Jane, I am sorry for your diagnosis. This is an excellent place for information and understanding. You will learn more than you ever imagined in the next few months. I am a 1 1/2 months into this and understand the feelings. I noticed the Portland, Oregon location. Perhaps we will meet at OHSU. I have just finished my first round of Vidaza, which seems to be the therapy of choice for my situation.
__________________
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.
Reply With Quote
  #4  
Old Sat Jan 4, 2014, 02:24 PM
sbk007 sbk007 is offline
Member
 
Join Date: Apr 2013
Location: NY
Posts: 322
Quote:
Originally Posted by jcbydesign View Post
My hematologist told me today that I have MDS 5q syndrome with 5% blasts. Hemoglobin 8.6 which is down from two weeks ago. The plan is to redo CBC in two weeks but she thinks I will need a blood transfusion in a month. After second or third transfusion will put me on Revlimid 10mg.
I have been very calm the since the Bone Marrow test but today, on the way home, it just hit me hard. The sudden realization that I will be at the mercy of this progressive cancer generated so many different feelings I just broke down and cried.
It is shocking. Did your doctor tell you that 75% of Del 5q patients respond to revlimid and live for decades?
Reply With Quote
  #5  
Old Sun Jan 5, 2014, 08:09 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
There is so much to learn when you are first diagnosed with MDS it's almost overwhelming. However researching for yourself is essential and knowledge is power. This website is an excellent start.

There is some good information elsewhere on the web too. I found the Aplastic Anaemia and MDS International Foundation web site really helpful. They have an online learning section where you can listen to presentations from experts. http://www.aamds.org/about/MDS/types

Remember "cancer" is a word, not a sentence!
__________________
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
  #6  
Old Sun Jan 5, 2014, 11:32 PM
jcbydesign jcbydesign is offline
Member
 
Join Date: Dec 2013
Location: Portland, Oregon
Posts: 2
Thank you all for your replies!

@SBK, my doctor told me I probably had 5 years, if all goes well. But there is that fear that I will be of those who doesn't respond to the Revlamid. But I am praying...I have two grandkids who love to play with me.

@baiile I am waiting for a referral appointment to OHSU so might see you there! Do you go to any support groups, and if, where?

@Cheryl - thanks for the web sites. I will be visiting them shortly.

@Tii It does sound like you had a real fast dunk in the MDS pool. How are you doing post transplant?
__________________
My name is Jane and I was diagnosed with Myelodysplastic Syndrome on New Years Eve.
Reply With Quote
  #7  
Old Mon Jan 6, 2014, 11:01 AM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Jane,
I live about 40 miles from Portland so I am not attending any support groups in your area. My connection at OHSU is Dr. Rachel Cook who is very informative. I am also taking two days of my seven day treatment each month at OHSU. I will most likely have my transplant at OHSU.
__________________
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.
Reply With Quote
  #8  
Old Mon Jan 6, 2014, 05:47 PM
DebS DebS is offline
Member
 
Join Date: Mar 2013
Location: IL, WI
Posts: 154
Jane,

I echo what everyone else has said. It is so hard to receive this diagnosis. But do know that you have support and information here. This is the best place to come for just about any reason. People are so supportive and everyone and I mean everyone is in your corner!!!!

God bless!

Deb
Reply With Quote
  #9  
Old Mon Jan 6, 2014, 08:08 PM
MaryS MaryS is offline
Member
 
Join Date: Nov 2013
Location: Herndon VA my father in New Orleans,La
Posts: 24
Thinking of you

Dear Jane,

My dad was dx this Oct 1 with MDS/Myleofibrosis. He is 77 yrs old.
Everyone here is so nice and encouraging. It is a frightful time because you hear things or reads articles and it scares you. I have read many positive stories on this site and others as well. Learn as much as you can, and ask questions. Don"t be afraid, you are your best advocate.I think it takes some time to process this information. It is a lot to grasp. Hugs to you tonight.You came to the right place. If you ever want to talk or need help just email me.
There is a lady on this site who has battled this dx for over 10 years. She is my ray of hope. It was her story that changed the way I see things.
There is a section where pt tell their stories. Her story is the first story.
My prayers are with you tonight.

Mary Schmitz
__________________
Mary, daughter / caregiver of Bob age 77; on Oct 1 2013 dx with MDS/MPN overlap +Trisomy. Jak2 at d< 5 blast. , and on March 1 2014 Dx with AITL non Hodgkin's Lymphoma.
Tx: decitabine/prednisone/Jakafi?
Reply With Quote
  #10  
Old Mon Jan 13, 2014, 04:09 PM
summerdrake summerdrake is offline
Member
 
Join Date: Dec 2013
Location: United States
Posts: 18
Jane,
The most important thing to remember is that YOU CAN DO THIS! I felt like you did when I was diagnosed with SAA in May 2013. I kind of went through the motions in the beginning but then when treatnents were discussed I got scared. Being healthy and then finding out this? No fun. I dont know you personally but I just know you are stronger than you think and you will get through this! Best of luck with everything. Keep us posted!
Reply With Quote
  #11  
Old Mon Jan 13, 2014, 08:07 PM
johnwc johnwc is offline
Member
 
Join Date: Dec 2013
Location: PORTLAND
Posts: 42
sbk and bailie

I'm John, diagnosed with CMML, in Portland and met with Dr Meyers at OHSU about transplant last week.

is it an epidemic??? ha ha
__________________
John, 68, Portland, Or. Dx with CMML on 12/1/2013, 3 days before admission for SCT, blasts went to 23%, AML. Did 7+3 chemo regimen. The chemo worked and blasts are 1% and did BMT on 1/1/15.- 12/2/15, ongoing GVHD in eyes. Lung fungus and Bronchiolitis Obliterans (BO).
Reply With Quote
  #12  
Old Mon Jan 13, 2014, 10:19 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Welcome John. I am surprised you are lined up with a transplant team already. Doesn't it seem strange (not a strong enough word) to get a diagnosis like this. I couldn't believe it and still have trouble after two months. I feel fine also. I am heading toward transplant at OHSU probably around March or April (that's a guess). I will be having a bone marrow biopsy (3rd) in about three weeks. That will determine if I stay on Vidaza (in my second cycle now) longer or have the transplant while I still feel healthy.
__________________
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.
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 - father just diagnosed with MDS-EB-2 Catl MDS 15 Tue Mar 7, 2017 11:25 PM
Family Member Diagnosed With Aplastic Anemia. Help? JustSomebody8 Questions and Answers 1 Mon Apr 7, 2014 08:23 PM
Mother just diagnosed - 2 trips to ER for Pulmonary Edema MDSnAL MDS 6 Wed Jan 30, 2013 04:43 AM
Father diagnosed MDS or AA hypocellular and treated with ATG vicid AA 9 Thu Feb 18, 2010 12:26 PM
New to the site, Diagnosed in November with AA Kim2007 AA 10 Sun Dec 21, 2008 01:28 PM


All times are GMT -4. The time now is 01:03 AM.


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