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#77
Wed Oct 2, 2013, 02:37 PM
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Patti,
I just wanted to express my condolences. The persistence, patiences, and fortitude that you and Dean showed us were inspiring.
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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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#78
Wed Oct 2, 2013, 02:44 PM
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Patti,
When I lost my mother to heart problems years ago, I found it helpful to write to her. Even though I could talk to her in my heart and mind, it seemed more real when I put it down on paper. So in those lonely hours at night when you can't sleep and you want to talk with Dean, you might try writing him a letter and telling him your feelings. I hope as time passes that you will get involved in some activities and stay busy. You have spent so much time in the last few years taking care of your mom and then Dean that I know you are at a loss now. But you have so much to offer and have been such an inspiration to so many of us when we have been down, that I know you could offer a lot to others, if you feel so inclined. Just know that there are a lot of us praying for you during this most difficult of times. Peace,
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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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#79
Wed Oct 2, 2013, 03:17 PM
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Dear Patti, I am so sorry for your loss. I am sure you are going to continue to be as brave as you have been through the MDS journey with Dean.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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#80
Wed Oct 2, 2013, 08:48 PM
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Al's wife, I agree with your suggestion. When my Dad passed I had a journal that I wrote to him in. I found it helped to pour out my emotions.
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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#81
Wed Oct 2, 2013, 11:28 PM
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Patti--I'm so sorry for your loss. I don't check in as much as I once did but was sad to see this news today. God bless you and keep you. Maria
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#82
Thu Oct 3, 2013, 01:54 PM
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Dear Patti
I am so sorry for your loss. I haven't posted much lately, but I have read and strongly identified with your journey (Jens and I have been married 13 years, together for 23, and he, too, is a strong fighter). I wish I could give you a hug and some comfort more than these words offer . . . I'm certain we all wish that. Just know that someone else, who has walked/is walking in your shoes, offers you love, strength, and comfort. 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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#83
Fri Oct 4, 2013, 07:00 AM
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Dear Patti and Dean, Dru and MagicBob - like your other Marrowforums friends my heart aches to hear this news. My thoughts and prayers are with you too.
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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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#84
Sat Oct 5, 2013, 04:42 PM
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Sorry I haven't been on the forum for a few days, but there is so very much that has to be done. I have been reading all of your comments for the last hour.
I so wish I could thank each of you in person for your kind and supportive words, your expressions of sympathy, and your thoughts and prayers during this difficult time for me. I cannot find the words to express my feelings for the love and support you have given to me. Each of you are helping me get through this and giving me great comfort. I hope you know how much it means to me. Sending my love, hugs, faith, hope and prayers, 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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#85
Thu Oct 10, 2013, 01:34 AM
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Quote:
Elaine
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#86
Sat Oct 12, 2013, 07:15 AM
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My deepest sympathy Patti. I pray that you will experience comfort and peace. Like you I believe you will see your beloved Dean again one day.
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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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#87
Mon Oct 14, 2013, 08:28 AM
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Quote:
I saw this post and am so sorry that I didn't get a chance to "thank you". This has touched my heart. Thank you so very much Honey for your beautiful poem and for carrying a lantern for Dean. 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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#88
Mon Oct 14, 2013, 01:41 PM
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Dear Patti
There are pictures of the walk in one of my threads. I did ask for one of the easier to collapse ones in case you would like me to send it to you. The lovely organisers were very obliging when I told them who it was for. They have a handle instead of being on a stick, so can be hung up. The lanterns are made of fabric not paper. If you would like it just pm me your address and I will post it off to you. Honey
__________________
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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