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MDS Myelodysplastic syndromes

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  #1  
Old Fri Jan 9, 2015, 03:24 AM
julielucas julielucas is offline
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No transplant Vidaza to Dacogen.

Hi all,
I hope this finds everyone in reasonably good health and excellent spirits. My husband Jeff has been having a very rough time lately.
He went through 6 rounds of Vidaza with no improvement so doc wanted to try Dacogen. He made it through one round but had to be put on hold because he spiked a fever, 103 and had to be hospitalized.
You all know the drill: pumped full of antibiotics, tested for every infection known to man- no cause found. All of his counts were way down: Hg 6.9, platelets 14 and wbc 0.6!!! They released him on New Years day- fabulous way to begin the new year!
His doc decided to hold off on round 2 of Dacogen until his counts came up. He's had 4 bags o'RBCs, 2 platelets and Neupogen shots for 5 days.
His count today was 0.9 for the WBCs!! Improving but still very low. We see doc tomorrow to see if he can resume the Dacogen on Mon.
But here's my dilemma: Jeff's condition is terminal and he probably won't last a year, if that long. This is his 3rd fight with blood disease. He isn't a candidate for SCT because his MDS is due to chemo for chronic lymphocytic leukemia. He doesn't want to go that route any way. His only option after Dacogen is palliative care.
I'm wondering what his quality of life will be while going through this chemo? When she was explaining the palliative care, doc said he'd probably feel better because he wasn't on chemo anymore.
If that's the case, then why even go through with the chemo? He's so weak, and his counts are not improving that much. Transfusions seem to only last a few days. I'm so afraid his counts are going to bottom out during chemo that he's incapacitated physically. He's a university professor and he lives to teach! He's so excited that the new semester is about to start. He tells me he just wants to be able to get through Spring semester.
Has anyone gone through Vidaza then Dacogen successfully? I know there are few members here that do well on Dac but they've all had SCT. I've read some studies that conclude that following Vidaza failure with Dacogen did not do much to increase one's life.
Of course this is for Jeff and his oncologist to decide. But he depends on me to research everything and advise him. Whatever he decides I'm behind him 100%. I would just like some input from you all. "Thanks for listening"
Julie
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Julie, wife of Jeff, 64 dx: CLL 2008 chemo, complete remission; thrombocytopenia 2010 ATG; RAEB-1 June 2014. Blasts 5%. Tx: prednisone-nope, Vidaza- 6 rounds, Blasts down to >1% but counts still low. Dacogen on hold until counts come up. Declared terminal.
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  #2  
Old Fri Jan 9, 2015, 11:34 AM
DanL DanL is offline
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Julie,

I am sorry to hear of your husband's condition. The two of you have a difficult decision to make regarding treatment and the impact on quality of life. You are correct in stating that research on dacogen after vidaza failure has not proven very effective. There have been cases where it has helped, but it is not common. There are a couple of people that have taken reduced doses of dacogen over longer periods of time with some success, and this might be an option to discuss with the doctor. Also, there are clinical trials depending on the sub-type of MDS and other health factors that may be available.
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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. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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Old Fri Jan 9, 2015, 12:18 PM
julielucas julielucas is offline
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Thank you, Dan. We just returned from the oncologist. Jeff will not be getting Dacogen on Mon because his blood numbers continue to fall.I don't know if this is national but here one cannot receive transfusions while in hospice. Jeff has announced that he will spend the next 21/2 days figuring out what he wants to do. I'll support whatever he decides. So so sad.
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Julie, wife of Jeff, 64 dx: CLL 2008 chemo, complete remission; thrombocytopenia 2010 ATG; RAEB-1 June 2014. Blasts 5%. Tx: prednisone-nope, Vidaza- 6 rounds, Blasts down to >1% but counts still low. Dacogen on hold until counts come up. Declared terminal.
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Old Fri Jan 9, 2015, 12:31 PM
bailie bailie is offline
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I'm so sorry Julie. These are very difficult decisions. It is one of the first things I noticed about this disease when discussing the options with the doctors. I kept waiting for something optimistic to base a decision. These outcomes seem to be a "roll of the dice". Your husband deserves better and I wish him the very best and most of all I wish him a special peace of mind.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Fri Jan 9, 2015, 01:13 PM
bebop bebop is offline
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I am very sorry to hear this. My Dad only opted for pallitive care so no vidaza or dacogen. I understand chemo really takes the quality of life. You and in my prayers.
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  #6  
Old Fri Jan 9, 2015, 03:06 PM
bailie bailie is offline
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Bebop, that is why the decisions are so difficult as you know. I had absolutely no problem with quality of life issues when taking Vidaza for eight months. The Vidaza did not affect me at all. I doubt if I would be alive today without the Vidaza. That is what makes these decisions so difficult. A person just doesn't know in advance how things will work out.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #7  
Old Fri Jan 9, 2015, 03:41 PM
julielucas julielucas is offline
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Quote:
Originally Posted by bailie View Post
Bebop, that is why the decisions are so difficult as you know. I had absolutely no problem with quality of life issues when taking Vidaza for eight months. The Vidaza did not affect me at all. I doubt if I would be alive today without the Vidaza. That is what makes these decisions so difficult. A person just doesn't know in advance how things will work out.
That's so true Baile. You just don't know how your body is going to react to treatments. It seems like most people opt for them and then have to decide again whether to continue or not. I can't imagine having to make this decision. Nor can I imagine what kind of emotional turmoil Jeff is going through right now. All I can do is be supportive and respect whatever he decides.

Thank you all for your kind thoughts. I wish you all the very best and am keeping you in my thoughts.
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Julie, wife of Jeff, 64 dx: CLL 2008 chemo, complete remission; thrombocytopenia 2010 ATG; RAEB-1 June 2014. Blasts 5%. Tx: prednisone-nope, Vidaza- 6 rounds, Blasts down to >1% but counts still low. Dacogen on hold until counts come up. Declared terminal.
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  #8  
Old Fri Jan 9, 2015, 03:57 PM
julielucas julielucas is offline
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Bebop, I re-read your post about your Dad's last day. I could feel the love and respect in your story. I know you probably miss him every day, but I hope the sadness and pain have diminish ed.

I lost my dad and older brother to bladder cancer. I was Dad's caregiver while he was in hospice. I was also helping my brother's wife when he was in hospice. People comment about how hard it must be to watch loved ones slip away, and sure, it was physically exhausting. But I think it is an honor to be able to tend to someone as life wanes. I can't think of a better way to show your love and appreciation to someone you love.
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Julie, wife of Jeff, 64 dx: CLL 2008 chemo, complete remission; thrombocytopenia 2010 ATG; RAEB-1 June 2014. Blasts 5%. Tx: prednisone-nope, Vidaza- 6 rounds, Blasts down to >1% but counts still low. Dacogen on hold until counts come up. Declared terminal.
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  #9  
Old Fri Jan 9, 2015, 04:46 PM
bebop bebop is offline
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julielucas I was honored to help take care of my dad and really honored that he chose me to see MY face as the last one he saw. I do miss him horribly but would not bring him back to this world for anything on earth. I watched him for almost 13 months suffer tremendously. Thank you for your thoughtful comment!
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  #10  
Old Sun Jan 11, 2015, 02:26 PM
mausmish mausmish is offline
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Beautifully said, Elaine and Julie. Julie, I'm so sorry for the hard decisions Jeff and you are facing right now. I hope things go as well as they possibly can whatever he decides. 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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