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  #1  
Old Fri Feb 14, 2014, 09:50 AM
squirrellypoo squirrellypoo is offline
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Join Date: Nov 2008
Location: London, UK
Posts: 458
Talking My London marathon ExtraMile videos
Hello all! I've not posted here in a while as I haven't had much news to share. I'm at 4.5 years post transplant with not too much to complain about, and I'm happy to report that I'm deep into training for my third post-transplant marathon (with my fourth in Berlin in September!).

I'm running London marathon in April for Anthony Nolan (the UK's bone marrow donor database charity) and they put me up for a special video project the marathon sponsors are running called Extra Mile. It's a big site gathering together inspiration from regular runners, but they're making a series of videos following four inspiring charity runners (that's me!) through to race day.

The first teaser video went up last week, and saw my blue wig in a ton of ads all over the internet!

WATCH HERE
(sorry I can't embed the videos here!)

The second video went live today, and was filmed on my moorings and I explain about my transplant and how I found out I was ill:

WATCH HERE

I'll bump this thread and post the other videos as they go live! I know funds are really tight when you're dealing with a major illness (it took us like 2 full years to dig ourselves out of my transplant-based financial hole), but if you do have any spare cash to donate to my fundraising, it'd be appreciated! http://uk.virginmoneygiving.com/melissafehr

Oh, and I got the amazing news yesterday (unrelated to this stuff) that I'll be speaking at the House of Commons (!!) in ten days' time about a special Stem Cell Transplant bill! I had to pick my jaw up off the floor! So excited but so nervous too.
Attached Images
File Type: png Screen Shot 2014-02-05 at 12.07.20.png (195.2 KB, 20 views)
File Type: png Screen Shot 2014-02-14 at 14.18.42.png (290.4 KB, 17 views)
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
Last edited by squirrellypoo : Fri Feb 14, 2014 at 09:51 AM. Reason: typo
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  #2  
Old Fri Feb 14, 2014, 10:47 AM
sbk007 sbk007 is offline
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Location: NY
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Thumbs up Awesome!!!
I don't know what else to say... . You look great.!
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  #3  
Old Fri Feb 14, 2014, 11:51 AM
MaryS MaryS is offline
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Join Date: Nov 2013
Location: Herndon VA my father in New Orleans,La
Posts: 24
That is so wonderful!
How great it is to hear such wonderful news like this. You are blessed.
I like how you are giving back to help others. Thanks for sharing your wonderful news, and praise God for your remission.

Mary Schmitz
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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?
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  #4  
Old Fri Feb 14, 2014, 02:11 PM
mausmish mausmish is offline
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Join Date: Mar 2010
Location: Maryland
Posts: 453
Fantastic, Melissa! You've been an inspiration every step of the way!
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #5  
Old Fri Feb 14, 2014, 02:36 PM
Laura Laura is offline
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Join Date: Aug 2006
Location: Minnesota
Posts: 433
Melissa!
You look so wonderful and healthy and beautiful! I LOVED the videos!! Thanks for sharing. You have been such an inspiration. Can you believe we are coming upon our five year birthdays? I am throwing a big bash and running in my first EVER anything...It's only a 1K but it is through Be The Match in Minneapolis on May 17th.

http://www.bethematchfoundation.org/goto/evanslj08

Hey do you have fb? If should could you pm me your name so I can add you and keep closer tabs on you I miss hearing for all of us "gang" from five years ago...well almost five years ago...it's so hard to believe how far we have come!
Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #6  
Old Sat Feb 15, 2014, 12:34 AM
riccd2001 riccd2001 is offline
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Location: Burlington,Ontario,Canada
Posts: 186
simply OUTSTANDING !!
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #7  
Old Sat Feb 15, 2014, 01:07 AM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Brought tears to my eyes! God bless! Loved how in a short amount of time you expressed SAA, BMT process, BMT survival and the decision process, and how your a fighter!!!!!!!!
I shared your YouTube on my FB page!
Your an inspiration girl I'm sweating a 5k for aamds foundation ~ hopes steps and a cure ~
And I'm not the one who had a transplant! Be thinking of your courage on my next run!!!!!!!!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #8  
Old Sat Feb 15, 2014, 02:10 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
So inspiring! God bless you.
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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 Sat Feb 15, 2014, 02:54 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
You speak very well on camera, Melissa, and this point that you make goes in the "no truer words were ever spoken" category:
You don't understand what you take for granted until it's taken away from you.
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  #10  
Old Sun Feb 16, 2014, 12:31 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
So good to hear from you. Glad you're doing so well!!
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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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  #11  
Old Wed Feb 19, 2014, 06:48 AM
Loxy Loxy is offline
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Join Date: Oct 2011
Posts: 8
Thumbs up Well done
Hi,

Well done Girl, you are such a great ambassador!

(PS I am Maeve @ieatcakensew on twitter)
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