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#51
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Dear Billy and Tina and Pasta -
Hi - Billy and Tina - I said it before and I will say it again - you both are such an inspiration to all of us. This is a very hard disease and you hit it on the head - two people with same disease - totally different responses.
Pasta - I too have felt the same way in the past few months. I have developed the most unbareble pain in my stomach and cant figure what it is. My bones throb that I just cant take it - but I am holding on for my donor - I just feel things will be different - Hang in there - and Billy what a wonderful thing you have done with the car. I am sure she is very happy she is getting to ride it. Love to you all. 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 |
#52
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Billy & Tina
Billy,
You are the BEST!!! What that car has to mean to Tina right now. Here's hoping the news from the hospital is good and the stay is short. God Bless! Deb |
#53
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Dear Tina, Billy, Pastalover, Deb, Susan, MagicBob - and anyone else I may have missed,
There just really aren't enough words to express my admiration for all of you - your determination and grit in the face of your pain, your health problems and your fear. The upbeat things you all say and do is an example of bravery and courage that few people have - all the while doing your best to support those who need it on the Forums. I wish you God's Blessings, Peace and Comfort in the days ahead. God Bless you all, Sally |
#54
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Quote:
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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. |
#55
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Hi everyone... I am so sorry to vent like I did. I sometimes just can;t hold all this in anymore. My spouse does not let me vent at all. It builds up and my frustration goes threw the roof. I know I need to be thankful... I wish none of us would suffer in any way. Thanks everyone for the kind words. My dear girlfriend died last week/colon cancer. She was such a trooper and as sweet as pie through her whole ordeal. I told my husband this week...I don't want to die a angry (b(witch).. I am not on any treatments & feel like a bomb is waiting to go off. What the heck are they waiting for? Who knows..the doctors sure don't. Thanks again...BE WELL!
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#56
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Pastalover.....you can come on here and vent anytime you want to........At some point and time we all have to let it out......If it helps......vent on....thats one of the reasons were here for you
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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 |
#57
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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
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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 |
#58
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We have come to end of the road.....I will be bringing Tina home, and Hospice will come to the house, we had a long hard battle but it was worth it, this past summer was the best ever...Sorry I'm at a loss for words right now, I concider everyone on here as part of our family, and wanted to keep ya'll in the loop....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 |
#59
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Billy,
I am so sorry to hear about your news. I wish you the very best. |
#60
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Billy and Tina,
You've been courageous from the start, despite odds that were stacked against you. I hope the peace you'll both have at home will sooth the mental and physical pain from the medical battle. |
#61
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Billy & Tina -
I'm so sorry to hear your news. You have both been a part of so much of my time here on the forum with your positive outlook and information. We will certainly keep sending our prayers to your entire family. Here in my city I see Corvette convertibles often and every time I see one I smile and remember Tina's. Take a ride when you can, enjoy it and know we are thinking of you.
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Liz, wife of Bob (64) dx 11/2012 RAEB II now 15% blasts rare t(1;3)(p36.3q21) Vidaza, Aranesp, Exjade |
#62
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Billy and Tina
I am so saddened to hear of the news. You both have been such in inspiration --- I am sending my love and prayers -
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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 |
#63
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Billy,
I'm so sorry to hear this news.You have been an inspiration to everyone on this forum and I really appreciate the helpful inputs given by you to eveyone here. Hugs and prayers ......
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RP, Daughter of SK age 66, diagnosed MDS July 2012 |
#64
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MDS
Dear Tina and Billy,
How sad that Tina at last lost her long fight! Warm regards to you both! Birgitta-A |
#65
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To Billy and Tina
Unbreakable
Will you make me a daisy chain necklace, with flowers freshly picked? Stolen from a hillside, near a little running brook One with bright yellow petals, as golden as the sun A colour that smiles with happiness, laughter and lots of fun. Will you nurture the little seeds, with attention and with care? Just a little time each day, is all that’s required for you to spare. From the foundations the seeds will grow, reaching for the sky. A base that provides the nutrients to survive as the days go by. From a little bud, a beautiful flower will take on form. Waiting to burst into bloom, from the seeds that were carefully sown. It’s petals kissed by the morning and covered lightly in a shimmery dew They’re natures little teardrops that help to cleanse and to renew. Thread each flower carefully, to form each delicate link These bind this chain together and provides the strength within. This chain now forms a circle. That represents never ending love. One that will last forever and blessed by the angels above. Will you make me a daisy chain necklace, that you promise will never break. I know when you place it around my neck, I have found my true soul mate. `·.¸¸.·´´¯`··._.··»-(¯`v´¯)-» written by Honey »-(¯`v´¯)-»`·.¸¸.·´´¯`··._.· For Billy and Tina...Unbreakable soulmates
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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. |
#66
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Dear Tina and Billy,
I am also very saddened to hear this news. Tina fought such a courageous fight with Billy fighting just as hard beside her. Rarely do you see such devotion. I pray for God's Comfort and Peace for you both. God Bless, Sally |
#67
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Billy and Tina,
I'm so sorry to hear your news. I do not post often, but I wanted to say that your posts have been inspirational and that Tina's fight for life has been remarkable. Lifeguard
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Diagnosed MDS Del 5q October 2007, blood transfusions 2010, commenced Revlimid 2010. Transfusion independent. |
#68
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Billy & Tina
You have fought the long, hard fight. I will never forget your posts. You were always one when you said "our counts are down." You were one with Tina and one with the diseases.
All of our thoughts and prayers are with you. May you find comfort and peace in these remaining days. God Bless you both! Deb |
#69
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I'm so sorry to hear this Billy.
I hope you have time to say all those things that have not been said. You need to know that you have done everything in your power to keep Tina happy and comfortable and by doing hospice you are continuing that loving care. There is nothing better in life than to be with people who love you and you have made this come true for Tina. All my thoughts are with you both. Chirley |
#70
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I don't think two people could have been happier 'til this terrible disease came. I can't fight any longer... What I want to say is I owe all the happiness of my life to you. You have been entirely patient with me and incredibly good. I want to say that – everybody knows it. If anybody could have saved me it would have been you. Everything has gone from me but the certainty of your goodness. I can't go on spoiling your life any longer. I don't think two people could have been happier than we have been.”
― Virginia Woolf
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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) |
#71
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Quote:
Dru and I pray that God comforts you and Tina during very difficult time. MagicBob |
#72
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Tina, Billy,
I keep you in my thinking. You are both an exemple for me because we are the same age and we are going in the same ordeal. Keep courage. hugs and friendly regards.
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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. |
#73
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Thinking of you, Tina & Billy.
Deb |
#74
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BillyB - we haven't heard from you for a while, and am wondering if you are going through a tough time at present. I am thinking of and praying for you and Tina.
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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. |
#75
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Billy,
I echo Cheryl's comments. Thinking of you and Tina. Deb |
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