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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Thu Nov 8, 2012, 01:45 PM
sherryjac2 sherryjac2 is offline
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Location: Bluffton, SC
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Thumbs up My Transplant Success Story

I have visitied this forum many times, but have rarely posted. I decided to post today to share my story. I was diagnosed with AML-6 in February 2012. I was diagnosed at a routine check-up with no symptoms. I was actively participating in sports activities. I am 61 years old, had no comorbidities, and had a 10 for 10 match with my sister. I had a transplant on July 3. I am about 130 days post transplant at present. I wrote this letter to many friends a few days ago, and I decided to share it here:

“Life is difficult. This is a great truth, one of the greatest truths. It is a great truth, because once we truly see this truth, we transcend it. Once we truly know that life is difficult-once we truly understand and accept it-then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.”*

My life became difficult on Feb. 9, 2012, when I had a bone marrow test to determine the cause of low blood counts. It became even more difficult when the biopsy revealed that I had a rare form of acute myeloid leukemia and would need immediate treatment if I wanted to live more than a few months.

The 8 months that followed were filled with emotional upheaval, irrational thinking, hours of internet research, hundreds of tests, a multitude of doctor’s appointments, chemo treatments, a stem cell transplant, a lengthy hospitalization period followed by relocation to the Charleston area for 55 days.

My perfect Sun City (home) world melted in the distance. My family and friends, God bless them, stayed in touch and provided a lifeline for me that sustained me through the worst of the incarceration.

My husband, as caretaker, held my hand as we walked through the valley of the shadow of cancer. We kept our innermost fears contained; convinced we’d get through it together. And we did.

On Oct. 17th, we were given the good news that the stem cell transplant was a wonderful success. I am leukemia free and my cells are all donor cells. In a sense, I have become my sister.

Initially weak and overly sensitive to the hot weather, I finally managed to regain my strength and endurance for the heat. I’m back to my old schedule, playing lots of pickleball! Naturally, I’ve lost “game,” but I’m working hard to get back to the level at which I enjoy playing.

Life is back to a new normal. While I am currently enjoying a complete remission, relapse is always a possibility. Issues between the graft and host can develop at any time, sometimes years from transplant. While it’s tempting to predict and plan for the future, I have adopted the position to live only in the NOW.

I recently watched the movie, The Best Exotic Marigold Hotel. To assuage their concerns, Sonny, the hotel manager, assures his guests that everything will be all right in the end…if it’s not all right then it’s not yet the end. This might not be the end of my journey, but right now everything is all right.

Many wonderful things happened to me during these past 8 months. The kindness and generosity of family, neighbors, friends, and acquaintances was overwhelming. I was truly humbled by others’ willingness to express their concern through prayers, cards, emails, phone calls and other acts of kindness. I have been a grateful benefactor of the power of collective prayer.

There’s nothing like a dread disease to help you focus on what’s really important in your life. As they say, don’t sweat the small stuff, and it’s all small stuff!

I was blessed to inherit my father’s acerbic sense of humor, and it has protected me like bubble wrap as I’ve bumped along life’s highway. Laughter IS the best medicine. Even in the face of death, there is that little chuckle that forms in the back of your throat when you see your bald head shining in the mirror.

At the pickleball courts the other day, I ran into a friend. He got the news 2nd or 3rd hand that I had managed a complete remission. I’ve been too busy being normal to send out a closing email for all those who followed my journey these past 9 months. He suggested I get with it and write the epilogue. Wish and command…

If you received this email, you can count yourself among the many people who followed my journey and lifted my spirits when the road got a bit too rocky and the hills a bit too steep.

Thank you…thank you…thank you,

Sherry (AKA Sherleta…127 days old)


*The Road Less Traveled, by M. Scott Peck.
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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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  #2  
Old Thu Nov 8, 2012, 01:49 PM
mausmish mausmish is offline
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Congratulations, Sherry! What a wonderful post. You are gifted to pack so much into so few words. Very best wishes on your continuing journey forward.

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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  #3  
Old Thu Nov 8, 2012, 01:54 PM
sherryjac2 sherryjac2 is offline
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Smile Funny to meet you here...Karen

I have followed your postings and blog for months. You have certainly been on the circuit a while! I initially had a great interest in you because you were about the same age when you were diagnosed and had some rather complicated cytogenics, as I did. Hope you're feeling well after the throat business :-(

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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  #4  
Old Thu Nov 8, 2012, 01:56 PM
mausmish mausmish is offline
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It's a pleasure to finally "meet" you, Sherry! I am doing great.
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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 Thu Nov 8, 2012, 02:00 PM
sherryjac2 sherryjac2 is offline
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Just curious, Karen...

Did the tongue cancer have anything to do with leukemia and/or transplant? I've always wondered if there are other cancers that are related to leukemia, as in the case with other forms of cancer.

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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  #6  
Old Thu Nov 8, 2012, 02:06 PM
mausmish mausmish is offline
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I asked the same question. My doctors all say that the tongue cancer is completely unrelated to the leukemia. One oncologist did say that my immune system apparently was not good at coping with chromosome damage. I suppose in that sense you could say there's a correlation. All cancer ultimately goes back to our immune systems not handling attacks on the body properly. My tongue cancer was related to the human papilloma virus (HPV) so probably completely independent of my MDS and treatments.
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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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  #7  
Old Thu Nov 8, 2012, 02:15 PM
sherryjac2 sherryjac2 is offline
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Thanks for the info...very enlightening!

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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  #8  
Old Fri Nov 9, 2012, 08:26 PM
Lori Patrick Lori Patrick is offline
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Sherry, Great post from you! Our diseases sure do make us put our priorities in the right place. Having a great caregiver(s) is a blessing. You sound very positive and that is the way you should be! What does not kill us makes us stronger!! I am approaching my 2 year birthday and it is unreal how far I have come.

Blessings to you. God is great.
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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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  #9  
Old Tue Nov 13, 2012, 06:35 PM
kris kris is offline
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Keep up the good work!

So excited for you and your family. Keep up the ggodwork and the positive attitude. "Hick cups" might occur but you will get through them. So excited for your positive results.
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Kris, wife of Rick. DX; MDS/ Ringed Siderblast 5/2006. Supportive care, then Vidaza x 25 mo. HSCT 11//1/11 doing GREAT!
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  #10  
Old Tue Nov 13, 2012, 08:51 PM
Lisa Z Lisa Z is offline
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your story

Thanks for posting your story. I only come here once in a great while, since my MDS has been in remission for 3.5 years after my Campath treatment at the NIH. But, I do look every now and then because while my disease doesn't run my life anymore, I do realize it is there and I can always relapse.

That being said,your story is inspriational. I am glad you are back in your Sun City. I had a friend who lived there a few years back and we visited there. I think you're in a great community, in a great part of our country. So much to enjoy right in your community and outside of it as well. I am sure you have lots of support there.

I hope you end up being one of those who is truly cured!
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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