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  #1  
Old Mon Oct 7, 2013, 02:11 AM
Ruth Cuadra Ruth Cuadra is offline
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Fifteen Years Since BMT
Dear Friends,

Today I celebrated the 15th anniversary of my matched unrelated donor bone marrow transplant for MDS. Although all anniversaries of my "other" birthday have been significant, this one turned out to be special in an unexpected way:

Earlier this week, Neil and I went to see my transplant doctor at the City of Hope for my annual checkup. We know the drill by heart. I had my blood drawn and then we waited to see the doctor. She told us that my counts looked fine (not a surprise) and then asked me what was new. I updated her on a couple of issues I'm dealing with and showed her an x-ray of my new right hip. She asked if my hip was replaced because of avascular necrosis (AVN), a common long-term side effect of transplant because of the exposure to steroids. My answer: no, it was actually the result of a small congenital deformity of the ball/socket that caused the hip to wear out prematurely. She wasn't concerned that this had happened.

I casually remarked that she's probably not very interested in much that happens to me now, and her reply knocked our socks off: She said that I don't need to come back for checkups anymore! I was dismissed by my transplant doctor! I am a former City of Hope patient! I think we were as astonished by this as we were when I was first diagnosed with aplastic anemia 17 years ago.

My medical treatment for AA and MDS has been a long journey, but essentially it's over. To give you a picture of how far I've come, here's where my counts were at the beginning and here at the end:

1996:
White blood count: 3.3
Hemoglobin: 4.7
Platelets: 14
2013:
White blood count: 8.3
Hemoglobin: 12.9
Platelets: 324
I'm no longer Ruth the AA patient, Ruth the MDS patient, or Ruth the recovering transplant recipient. I'm just Ruth.

Regards to all,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #2  
Old Mon Oct 7, 2013, 06:26 AM
Honeybun Honeybun is offline
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Great News "Just Ruth", may I suggest you do it with jazz hands like "Just Jack" did it on the sitcom Will and Grace, then your still special

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #3  
Old Mon Oct 7, 2013, 07:12 AM
NLJabbari NLJabbari is offline
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Awe, Just beautiful <3 Congratulations Ruth & Neil!
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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  #4  
Old Mon Oct 7, 2013, 09:04 AM
Marlene Marlene is offline
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What a great milestone to hit. Congratulations!!!
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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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  #5  
Old Mon Oct 7, 2013, 09:09 AM
susanML susanML is offline
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Ruth
Congratulations on your success!!!! You are truly a success story - This is great to hear.
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #6  
Old Mon Oct 7, 2013, 09:09 AM
DebS DebS is offline
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Dear Just Ruth,

How wonderful for you! You are such a source of inspiration and hope to us all. By sharing your journey both the ups and the downs, it has enlightened all of us about this thing called "transplant."

Congratulations on your anniversary and huge milestone. May I suggest at least 17 days of super celebrating for the month of October

Deb
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  #7  
Old Mon Oct 7, 2013, 10:55 AM
vickij vickij is offline
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Congratulations Ruth
I have thought about you often and wondered how you are doing. You are a great inspiration to us all.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #8  
Old Mon Oct 7, 2013, 02:45 PM
riccd2001 riccd2001 is offline
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Thank you Ruth for your uplifting post. It helps to balance the recent news of lost members that was heartbreaking for us all.
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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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  #9  
Old Mon Oct 7, 2013, 05:33 PM
Darice Darice is offline
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Thumbs up Way to go!
Ruth, that is so tremendous! I was just looking recently and noticed that Day 2000 is coming up for my husband, Jens. We need to come up with a plan for celebration for that . . . but 15 years . . . and to be dismissed. Incredible. Congratulations!
Darice
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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  #10  
Old Mon Oct 7, 2013, 07:00 PM
mausmish mausmish is offline
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Dear "just Ruth",

Congratulations on getting the pink slip from your transplant doc! I didn't realize until I finished your post and exhaled that I'd been holding my breath, fearful that something was wrong. I'm so happy for you and Neil (and all of us here) that all is good. Life is grand!

Karen

P.S. Happy rebirthday!!!
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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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  #11  
Old Mon Oct 7, 2013, 08:08 PM
Whizbang Whizbang is offline
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Ruth,

Here's to your 20 and 25 year anniversaries...

No looking back now... The future is wide open...
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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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  #12  
Old Mon Oct 7, 2013, 09:02 PM
Relentless Against SAA Relentless Against SAA is offline
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Ruth,
Congratulations on a great MUD transplant. What a blessing. I wish everyone could have those results. Our transplant doc tells us that only approx 20 to 30% have great results with little to no GVHD. I pray everyday that this number will increase with research. As if it is not enough to go thru a transplant, but then really heartbreaking to see those that made it thru only to die of severe GVHD. I truly hope that in the near future doctors will be able to promise successful MUD transplants for everyone. It is results like yours that keep the research going. Thank you for your encouragement.
Last edited by Relentless Against SAA : Tue Oct 8, 2013 at 03:23 AM.
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  #13  
Old Tue Oct 8, 2013, 05:10 PM
Lori Patrick Lori Patrick is offline
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CONGRATULATIONS RUTH. I remember when I first began looking at this site 3 years ago and thinking I would never make it as long as you had!! That was 3 years ago! I'm still following you! You are a great inspiration.
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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  #14  
Old Tue Oct 8, 2013, 07:27 PM
slip up 2 slip up 2 is offline
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You go girl......
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  #15  
Old Tue Oct 8, 2013, 07:50 PM
sherryjac2 sherryjac2 is offline
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Thumbs up Babe Ruth Hits A Homer!
How amazing...against all odds. It's like winning the lottery...someone from the millions of participants gets to win! I think the hope of being in the small percentage of long term survivors is what keeps us all going. "Ya gotta believe..."

It's so easy to be defined by our disease because it is ever-present. Good for you to move on with your life! Take only the good stuff, and run.

Sherry
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Sherry Baby 62 Diagnosed 2/11/12 MDS to AML-6; del 20q and trisomy 21; Vidaza 3 month trial unsuccessful; ALLO BMT 7/2/12; Sister Donor 10/10 match; Chronic GVHD mucous membranes, otherwise all's well :0)
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  #16  
Old Wed Oct 9, 2013, 12:41 AM
Heather8773 Heather8773 is offline
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Awesome congrats!
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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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  #17  
Old Wed Oct 9, 2013, 04:53 PM
KMac KMac is offline
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Congratulations Ruth!

You and Neil are such an inspiration and source of hope for me, and I know I speak for many others on this forum from around the world when I say that.
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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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  #18  
Old Thu Oct 10, 2013, 01:33 PM
sbk007 sbk007 is offline
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.WOW!, and Congrats!!, looking forward to seeing your 25 year post anniversary.
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  #19  
Old Fri Oct 11, 2013, 02:00 AM
Ruth Cuadra Ruth Cuadra is offline
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Thank you very much to everyone for your many kind words.

Honey, this is a "jazz hands" moment for sure!

DebS, I don't know if I can squeeze in 17 days of celebrating, but I'm willing to try ;-)

Darice, your mention of Day 2000 coming up for Jens made me recall that I knew exactly how many days post-transplant I was for a long, long time. But I hadn't thought about that for a while so I had to go figure it out. 15 years = 5480 days. Wow.

Karen, sorry to make you hold your breath. Didn't mean to scare anyone!

Relentless Against SAA, I too hope that research will bring an end to the threat of GVHD for everyone.

Keep up the fight!

Just Ruth
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  #20  
Old Fri Oct 11, 2013, 11:56 AM
Sally C Sally C is offline
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Hi just Ruth,
Your post was so inspiring and eloquent. What wonderful news for you and Neil.
The silver lining to what you both have been through for all on the forums is Marrowforums. I am so sorry for your long ordeal but so thankful that you and Neil decided to do a greater good for so many people because of it.
Have a great time for the rest of your life - you certainly deserve it.
Best wishes,
Sally
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  #21  
Old Fri Oct 11, 2013, 04:14 PM
Chirley Chirley is offline
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Ruth, I want both you and Neil to know that this forum has been my support system.

I admire you both for continuing to provide this site.

When you have been to a dark place and emerge into the sunlight as you both have, the tendency would be to move on and try to forget. You both remind yourselves of those dark days when you help us and I, for one, am immensely grateful.

With heartfelt thanks.

Chirley
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  #22  
Old Sat Oct 12, 2013, 07:39 AM
Cheryl C Cheryl C is offline
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Fantastic news! Congratulations! Your story gives us all hope. Thank you to you and Neil for the wonderful work you do on this forum.
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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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  #23  
Old Mon Oct 21, 2013, 08:57 PM
4bcsboys 4bcsboys is offline
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Talking Happy birthday!
Congratulations on your milestone and thank you for sharing with us. Your encouragement to this community is wonderful! My husband just read this with me and said, "That's like you! One day you will be just you too!"
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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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  #24  
Old Sat Oct 26, 2013, 07:15 PM
dfantle dfantle is offline
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Ruth, wonderful news!! What a great feeling to be free of being a patient. Congratulations.
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Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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