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  #276  
Old Wed May 29, 2013, 11:09 PM
mausmish mausmish is offline
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Melissa, I think you're awesome! Congratulations. You consider to excel despite all difficulties, an inspiration for us all. Karen
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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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  #277  
Old Thu May 30, 2013, 09:24 AM
squirrellypoo squirrellypoo is offline
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Quote:
Originally Posted by Neil Cuadra View Post
Not being a runner I'm puzzled about your transition to a midfoot strike. I know it's about changing how your foot impacts the ground, but what's the reason for switching?
It's a good question! The short answer is efficiency.

For the previous ten years of my running, I put my foot out, and it strikes the ground in front of me, with my heel hitting first, I pull back, and my other legs comes out in front of me, hitting with the heel. This means that I'm exerting with each step to "pull the ground back", and heel striking causes extra strain to the hips and knees, with the quads doing most of the work.

In contrast, I've been working with a trainer/physio to help me run smarter and more efficiency. First she started with having me increase my cadence (number of times my feet hit the ground), to decrease the impact as they can't be raised as high. Then she got me throwing my centre of gravity forward, which gives you that feeling like you're starting to fall, which naturally moves your feet underneath you instead of in front of you, and makes it nearly impossible to also strike with your heel. At the same time she got me running on the balls of my feet, like I was "trying to sneak up on someone", light and easy. And the most recent piece to add in is to now kick my heels up in the back and raise my knees, so I get a circular motion to my stride.

This improved form means my calves are the springs that absorb the impact instead of my knees and hips, but the balls of my feet really need toughening up first! I can hold on to my good form for 10km at the most now, but by the time my next marathon rolls around (London, next April), I should be in a much better position!

Oh I forgot to mention earlier, but I'll also be competing in the British Transplant Games in August! Unfortunately the longest running event they do is the 3km "mini marathon" so I'll really have to focus on speedwork and the track if I want to win that gold medal for Kings.

PS: thanks Karen! Hope you're doing okay and your mouth isn't too bad these days.
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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!)
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  #278  
Old Wed Jun 5, 2013, 01:58 AM
Laura Laura is offline
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Thanks for the update Melissa and great pictures!!! You look so beautiful and healthy. I am so happy at all you are able to accomplish and do post bmt. You are such an inspiration!
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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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  #279  
Old Mon Jul 8, 2013, 06:13 AM
squirrellypoo squirrellypoo is offline
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Happy rebirthday to me!! Four years ago today I received the stem cells from my anonymous donor.

We're going to celebrate tonight with dinner and a cocktail. Funny, four years ago it was in the midst of a heatwave, too. Everyone wanted to come visit me for the air conditioning.
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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!)
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  #280  
Old Tue Jul 9, 2013, 05:14 AM
tserdogan tserdogan is offline
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Smile

Congratulations again.
Mini Transplant Team
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  #281  
Old Wed Jul 10, 2013, 08:10 AM
squirrellypoo squirrellypoo is offline
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Originally Posted by tserdogan View Post
Congratulations again.
Mini Transplant Team
Thanks Serkan! How are you going? Your daughter must be so big now!
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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!)
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  #282  
Old Wed Jul 10, 2013, 09:30 AM
4bcsboys 4bcsboys is offline
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Congratulations on your birthday! I hope you a wonderful evening out. Thanks for posting as it encourages us newbies!
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Wife and mother of three young boys, diagnosed at age 39 with AA 2007; treated with ATG and cyclosporine; progressed to MDS end of 2012; MUD on June 26, 2013.
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  #283  
Old Thu Jul 11, 2013, 12:24 AM
Heather8773 Heather8773 is offline
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Happy rebirthday! Hope y'all had an amazing time!
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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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  #284  
Old Thu Jul 11, 2013, 08:15 AM
Cheryl C Cheryl C is offline
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Great news that you're doing so well!
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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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  #285  
Old Fri Jul 12, 2013, 07:43 AM
tserdogan tserdogan is offline
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Quote:
Originally Posted by squirrellypoo View Post
Thanks Serkan! How are you going? Your daughter must be so big now!
yes it is true.she ıs 14 months old she starts to talk easy words
baba :father
kedi :cat
bebe :baby

i had avn problem at femur head of hip because of high dose steroid.
Recovery Surgery is must in future.

Other things are checked every month.İ still use cortisone small dosages.
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  #286  
Old Mon Jul 15, 2013, 01:41 AM
Cheryl C Cheryl C is offline
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All the very best! I hope you continue as successfully as you have started. Looking forward to reading further progress reports.
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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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  #287  
Old Tue Jul 8, 2014, 11:53 AM
squirrellypoo squirrellypoo is offline
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Looking up on my last few posts, it appears I only ever post on my rebirthday these days. Oops!

But today is FIVE YEARS to the day from when I received my stem cells from my unrelated donor in America! I cannot say enough to thank him for giving me the life I have today - without him it's extremely unlikely I'd have seen 2010, let alone 2014. With his blood I've ran three marathons, including a Boston Qualifying time at London this spring, too (3:30:39!). I've started my own business in the past year, too, and my husband and I have so much to celebrate each and every day.

We'll be toasting my donor at dinner tomorrow night!
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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!)
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  #288  
Old Wed Oct 8, 2014, 05:05 AM
squirrellypoo squirrellypoo is offline
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Just thought I'd give a little update since I ran another marathon last weekend in Berlin and it was such a happy, joyful, wonderful experience for me. I ran it with a guy from my running crew I didn't know well at the start, but we were like brother & sister by the end! We wanted to smile and cheer the whole way through, and remember how lucky we are to be able to run. We finished in the exact same time, 3:46:05 - nowhere near a Personal Best for me, but I ran it really evenly paced which is what I wanted.

I also had some big news a few weeks ago - after a bunch of consent forms were passed around the world, I got details of my donor!! So I know his name and where he lives, and I dropped him an email but haven't heard back yet. I was pretty emotional just to see his name, really. Amazing.

Annnnd, after my performance at the British Transplant Games this year (4 gold and a silver in track & field), I've been selected to represent Great Britain at the World Transplant Games in Argentina next year! OMG! Now, I think I've finally accepted that I'll never compete at the Olympics (ha!), so this is truly a wonderful thing!
Attached Images
File Type: jpg Berlin_BrandenburgGate_gunfinger.jpg (100.7 KB, 8 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!)
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  #289  
Old Wed Oct 8, 2014, 05:20 AM
Cheryl C Cheryl C is offline
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You are amazing! Great to read your continuing story.
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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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  #290  
Old Wed Oct 8, 2014, 08:33 AM
Whizbang Whizbang is offline
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Congratulations on your run!!!

So inspiring to see such great things after enduring so much...

All the Best, and May God Bless! (us all)
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #291  
Old Wed Oct 8, 2014, 12:34 PM
Neil Cuadra Neil Cuadra is offline
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Congratulations, Melissa. You're an Olympian to us!

May I ask why it took 5 years to learn about your donor? Was this a restriction imposed on you or just a matter of when you and your donor decided you were ready to exchange information?

I've read that NHS Blood & Transplant encourages donors and recipients to wait 2 years before exchanging identification, and that the Anthony Nolan bone marrow registry requires it. In the United States it's one year, and other countries have other policies, some even disallowing contact entirely.

My wife's donor was shy about taking credit for being a hero, but we were eager to talk to her at exactly the one-year mark, and we were so pleased that she agreed to meet us.

Do you think you and your donor will get to meet?
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  #292  
Old Wed Oct 8, 2014, 12:45 PM
KMac KMac is offline
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Congratulations, Melissa! You are an inspiration to all of us.

I have been slowly getting back into running since my ATG treatment 2.5 years ago, but nothing like what you do.
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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  #293  
Old Wed Oct 8, 2014, 09:25 PM
Optimistic Optimistic is offline
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Talking

Wow a true inspiration to us all thanks for keeping with updates this really helps ease my anxieties God bless you!
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  #294  
Old Thu Oct 9, 2014, 07:23 AM
squirrellypoo squirrellypoo is offline
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Quote:
Originally Posted by Neil Cuadra View Post
May I ask why it took 5 years to learn about your donor? Was this a restriction imposed on you or just a matter of when you and your donor decided you were ready to exchange information?
It just boils down to a lack of information, really. I wrote him a letter at 1 year, but when I didn't hear back at all, I figured he just didn't want the attention and maybe thought nothing of the donation, so I didn't write again.

But then earlier this year, I learned through Twitter that many donors aren't allowed to respond to recipient letters! So that changed my mind and I thought I'd write to him again at my 5th rebirthday, and in getting the proper address from Anthony Nolan, I learned I could request for consent forms to exchange personal information. This was the first I'd heard of it, so I did, and he received the request along with my 5th year letter. It was then another month or so before I got a phone call from Anthony Nolan saying they were sending his contact info through.

Thank you to all of your congratulations! I hope that my posting here will inspire other BMT patients to believe that they can get through this some day and be even fitter than they were before their illness. I only ever ran one 10km race before I got ill, and never dreamed that one day I'd ever regain my fitness, let alone run faster or run half marathons or full marathons like I do now!

Oh, and I got a mention in another runner's Berlin Marathon race report! I saw him in our starting pen and went over to say Hi and that Anthony Nolan found me my bone marrow donor. http://www.blueeyedsun.co.uk/blog/an...greeting-card/
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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!)
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  #295  
Old Thu Oct 9, 2014, 11:43 AM
GoodDay5150 GoodDay5150 is offline
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Congrats on your succ trans. I had a stc almost 3 yrs ago from an anon donor that nvr replied bk to me. I had severe PNH and was nvr diagnosed until abt 7 mos b4 my trans took place. So it was a pretty quick series of events. I nvr had Soliris or transfusions, just blood thinners, iron, folic acid, etc up until my mini-trans. I still have some mild GVHD but I'm getting my life bk together. Good luck and I'll chk back to read your posts.
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