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  #76  
Old Tue Oct 1, 2013, 05:06 PM
Al's Wife Al's Wife is offline
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Billy,

You have been there for all of us and hope we can be there for you. Tina has fought such a courageous battle and I know she is thankful to have had you by her side.
God bless you and comfort you.
Peace,
__________________
Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #77  
Old Fri Oct 4, 2013, 05:07 PM
bebop bebop is offline
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thinking of you both right now hon. praying for peace.

Elaine
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  #78  
Old Sat Oct 5, 2013, 07:44 AM
billyb billyb is offline
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Thanks everyone..............Billy
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Billy - Husband of Tina: 31 years old at dx - June 2007 - Stage 3 Breast Cancer - Dec 2008 Stage 4 - Brain and Bone - Nov 2012 - Therapy Related AML. Curently on Decitabine for Therapy Related AML and Herceptain for ongoing Breast Cancer. Weekly transfussions of blood and platelets
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  #79  
Old Sat Oct 5, 2013, 08:10 PM
Lori Patrick Lori Patrick is offline
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Prayers for strength.
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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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  #80  
Old Wed Oct 9, 2013, 10:12 PM
billyb billyb is offline
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Wanted to thank everyone, for thier support thru the last year, allthough Tina and I knew what we were up against we shielded everyone around us from what we talked about with our Leukemia Doctor the very first time we met with her, and I would try to keep things on a positive note when posting on here. How I would like people who read this thread and the other one I started with is, we were not the norm when it came to an AML diagnosis, so dont use Tina as a guage when it come to yourself or someone you know, the odds were stacked against us from the start, even though we didnt understand why and were angery at times, we knew we were truly blessed with what time we had, the last year has been hard, but we chose to live it up while we had the chance, the road ahead will be difficult, but me and my son will get thru this. Tina passed away Tuesday October 8th in the early morning hours, she was sleeping and at peace. I want to thank ya'll for all the love and suppot......Billy
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Billy - Husband of Tina: 31 years old at dx - June 2007 - Stage 3 Breast Cancer - Dec 2008 Stage 4 - Brain and Bone - Nov 2012 - Therapy Related AML. Curently on Decitabine for Therapy Related AML and Herceptain for ongoing Breast Cancer. Weekly transfussions of blood and platelets
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  #81  
Old Wed Oct 9, 2013, 10:39 PM
Whizbang Whizbang is offline
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May she rest in Peace...

Know that you made the best of the time you had, best wishes to you and your son.

God Bless...
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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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  #82  
Old Thu Oct 10, 2013, 03:10 AM
Neil Cuadra Neil Cuadra is offline
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Billy,

I'm very sorry for your loss. You and Tina knew what was most important: to cherish your remaining time together. You made the most of the poor hand you were dealt.

Your life is entering a new phase. Even knowing it was coming can't make it easy or less sad, even for a positive person like you. I hope the inner strength you've showed us and memories of your best times with Tina will ease the pain and carry you forward.
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  #83  
Old Thu Oct 10, 2013, 03:36 AM
Chirley Chirley is offline
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I'm so very sorry Billy.

I'm pleased for Tina that she passed in her sleep and in peace.

I wish you strength and comfort for the future.
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  #84  
Old Thu Oct 10, 2013, 06:06 AM
Birgitta-A Birgitta-A is offline
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AML
Dear Billy,
Now Tina has at last found peace. You supported her in the very best way during her severe diseases.
Warm regards
Birgitta-A
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  #85  
Old Thu Oct 10, 2013, 08:46 AM
DebS DebS is offline
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Billy,

My heart is so heavy for you. You couldn't have been a better caregiver, husband, or father. You always have had such a positive attitude when faced with unbelievable obstacles. May that attitude carry you through this difficult time.

Know that you always have support here. There are so many of us who have followed your story and who prayed constantly for you and Tina and your family.

As others have said, she is at peace now.

God Bless you!

Deb
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  #86  
Old Thu Oct 10, 2013, 09:24 AM
susanML susanML is offline
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Billy -
Quote:
Originally Posted by billyb View Post
Wanted to thank everyone, for thier support thru the last year, allthough Tina and I knew what we were up against we shielded everyone around us from what we talked about with our Leukemia Doctor the very first time we met with her, and I would try to keep things on a positive note when posting on here. How I would like people who read this thread and the other one I started with is, we were not the norm when it came to an AML diagnosis, so dont use Tina as a guage when it come to yourself or someone you know, the odds were stacked against us from the start, even though we didnt understand why and were angery at times, we knew we were truly blessed with what time we had, the last year has been hard, but we chose to live it up while we had the chance, the road ahead will be difficult, but me and my son will get thru this. Tina passed away Tuesday October 8th in the early morning hours, she was sleeping and at peace. I want to thank ya'll for all the love and suppot......Billy
I am so very sorry for your loss - you gave such wonderful support - and I truly hope that you get all the support you need in raising your son. I am just at the beginning of finding my match - I have also been dealing with this for almost 20 yrs. First the aplastic anemia, then MDS, now evolving into AML - you both have shown me to stay positive and find the happiness in life that is there. I wish you much happiness in your life. Susan
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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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  #87  
Old Thu Oct 10, 2013, 10:05 AM
Sally C Sally C is offline
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Dear Billy,
I am so sorry to hear this news. But at least your Tina is now at peace.
May God comfort you and your son as only He can.
God Bless,
Sally
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  #88  
Old Thu Oct 10, 2013, 11:55 AM
Chad S Chad S is offline
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God bless you Billy.
You have handled this with an admirable strength and dignity.
And you have been a good role model for those of us that follow you.
Chad
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Chad, husband of Danielle age 39, diagnosed MDS (RAEB-1) Feb 2013, BMT May 2013
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  #89  
Old Thu Oct 10, 2013, 05:16 PM
slip up 2 slip up 2 is offline
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Billy....so very sorry....kate
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  #90  
Old Thu Oct 10, 2013, 06:00 PM
rkp rkp is offline
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Very sorry for your loss.
May God give you and your son courage to face this.
Your support for Tina through out her ordeal and your positive attitude is inspirational.

-RP
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RP, Daughter of SK age 66, diagnosed MDS July 2012
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  #91  
Old Thu Oct 10, 2013, 11:03 PM
DanL DanL is offline
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Billy,

Tina was a fighter and you were the best support she could have. I am very sorry for your loss.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #92  
Old Fri Oct 11, 2013, 07:18 AM
PattiDean PattiDean is offline
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Billy, I was so sorry to see your post this morning! You and Tina have been an inspiration to each of us.

There are no words of comfort that I can find at this moment, but please know you and Tina will be in my thoughts and prayers.

I wish I had enough hugs to send your way to help ease the pain.

Patti
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Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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  #93  
Old Fri Oct 11, 2013, 07:32 AM
susanML susanML is offline
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Patti - Billy
I hope you are being helped during your time also. I think of you often and wish I could make things better for you and Billy. You both have so strong for your mates. Wishing the best for you both.
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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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  #94  
Old Fri Oct 11, 2013, 02:12 PM
Lbrown Lbrown is offline
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Billy,

I am so sorry to hear about Tina.

Deb
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  #95  
Old Fri Oct 11, 2013, 08:06 PM
Darice Darice is offline
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Billy,
I am so very sorry to hear about the passing of Tina. My thoughts are with you and your son.
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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  #96  
Old Sat Oct 12, 2013, 07:07 AM
Cheryl C Cheryl C is offline
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Dear Billy

My heart aches for you. I felt that I knew Tina personally through your posts. My thoughts and prayers are with you and your son. May God continue to comfort you and give you peace. I believe that this world is not the end and you can expect to see your darling Tina again one day.

No one could have done more for Tina than you did. Thank you for your wonderful posts which have encouraged all of us. I send you both an online hug.
__________________
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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  #97  
Old Sun Oct 13, 2013, 01:04 PM
Al's Wife Al's Wife is offline
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Billy,

I just got back in town and was saddened to learn of Tina's passing. My thoughts and prayers are with you and your son. I could tell by your posts that you were the best of caregivers for Tina.
Having been widowed years ago at the age of 25 and having two small children at the time, I can tell you that time is the best healer. And while you never forget, the pain does ease and life does go on.
I am glad you have some great memories with Tina during these difficult years of illness.
She was so young but a real fighter.
God bless you and I hope you will keep in touch.
__________________
Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #98  
Old Sun Oct 13, 2013, 09:19 PM
gramous gramous is offline
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Billy,

I'm so sorry to hear for Tina. You're in my thinking, you and your children. I wish you a lot of courage. big hugs. béné
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boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
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  #99  
Old Mon Oct 14, 2013, 07:34 PM
Lifeguard Lifeguard is offline
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Dear Billy

I'm so sorry to hear about Tina's passing. You will be in my family's prayers and thoughts.

Rachael
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Diagnosed MDS Del 5q October 2007, blood transfusions 2010, commenced Revlimid 2010. Transfusion independent.
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  #100  
Old Wed Oct 29, 2014, 09:41 PM
Bambam Bambam is offline
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Quote:
Originally Posted by billyb View Post
BamBam if your a regular person your not supposed to have any blasts in the blood....Going ron 4% to 33% is an indicator that treatment may not be effective anymore, have them do a differential every week for 6 weeks, if your on a 28 day cycle of treatment you can see whats going on, or ask for another BMB or better yet a FISH Test, that will determine the best route for tratment.....Billy
Dear Billy, I'm saddened to hear that Tina is now receiving hospice care. I hope that the care you both receive is as caring and accessible as is mine. My Vidaza was stopped after four months after biopsy showed increased blasts. I had such awful side effects with it, so it was a relief to stop. After another ER room with that awful debilitating gut pain (since relapse last March) I was admitted where a CT scan (the latest of many that showed nothing) started to show swollen lymph nodes in my abdo, as well as thickening between the large and small colon - the leukemia had moved into that area and I suspect is now in my CNS. I was discharged one week later, after IV fluids, transfusions and antibiotics for an opportunistic UTI and declared palliative. I am now on Hydroxyurea, which lowers my counts even more dramatically and I'm close to calling it a day with the TRX. I'm not sure I can take any more. As Tina's loving Caregiver, I realize how hard this must be for you too, as I watch my own spouse struggling to cope with this, the challenge of all challenges. I send you love, peace and understanding and I send Tina love, peace and freedom from pain. Thinking of you both, bb
__________________
DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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