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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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  #1  
Old Wed Feb 2, 2011, 02:46 PM
lauras lauras is offline
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Join Date: Feb 2011
Location: Fairfax, VA
Posts: 9
New Here/Here for my Dad

Hi everybody,

I'm not even sure where to start. I just wanted to introduce myself (I only have a couple of minutes) and I will return with more information. You all are my last hope for my Dad in my eyes, although I'm quite positive believe it or not.

I will post his story later and please I look forward to any advice, opinions, anything that will possibly help prolong his life. He is 67 years old, a very young 67 years old. He has had to stop working (which he didn't want to) and things are not looking good. I look forward to posting soon!

I pray for everybody's health and or their loved ones.

Laura
Northern Virginia
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Laura, father diagnosed with MDS/MPD in 2006; IV/IG monthly treatments
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  #2  
Old Wed Feb 2, 2011, 03:50 PM
cheri cheri is offline
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Join Date: Nov 2010
Location: Tuckahoe New Jersey
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Hi Laura...
You are fortunate to have found this wonderful forum....
Your Dad is fortunate to have you on his side!
Look forward to hearing more and hope is available here!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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Old Wed Feb 2, 2011, 04:20 PM
lauras lauras is offline
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Hi Cheri-

Thanks for responding! I see you are from Jersey, as is Dad and my entire family. Good people. Okay, here goes nothing.

During Dad's annual physical in 2006 they noticed his platelets were below the 140 K mark and he went for bloodwork every 2 months. Long story short in May of 2007 he went golfing and he had to depart early because he was so out of breath and he felt like he had never felt before. He woke up the next morning with an enormous bruise on his arm. We took him to the ER and his platelets were under 10 K. Thus the beginning of bone marrow biopsies, prednisone, pneumonia (that almost took his life last summer...was a fungal pneumonia and was amazing he recovered), IV/IG treatments, platelet and blood transfusions, John Hopkins, National Institute of Health, you name it....he was diagnosed with MDS/MPD. So he's been ill for sometime, as you know, there are bad days and better days.

His energy is so low, his HGB is typically under 8 and Procrit has been helping, he stopped Procrit and hopefully will be receiving that shot again soon. His white blood cells remain pretty constant in the 70's. He has a chronic cough, which they say has nothing to do with his disease, but we seem to think it does.

He is basically at a crossroads I feel. He can't have a transplant because of his age. He has stage 4 MDS, which I know is not good. There has to be something that can help me. I keep reading about Vidaza. Your husband I believe had success with it Cheri?

If anybody could tell us anything...we feel like we have done so much for him and there has to be something else that we can do for him. I kept telling him to join this forum, but he hasn't, so I decided to in lieu of him.

I don't have time to re-read this (2 small children running around!), but hopefully I didn't miss anything pertinent and covered just about everything. I feel like we've been through so much more than the few sentences I typed, but I don't know. Thanks for listening and I appreciate and look forward to reading some replies!

Laura
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Old Wed Feb 2, 2011, 04:21 PM
lauras lauras is offline
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I'm sorry Cheri...not your husband, that must have been somebody else. You have MDS...my apologies. I hope you feel well. God bless.
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  #5  
Old Wed Feb 2, 2011, 08:41 PM
cheri cheri is offline
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Location: Tuckahoe New Jersey
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Hi Laura
BEG your father to go on this site for his sake and yours! It will allay some fears, and being a go between is never easy, especially with little ones...

That said, I just finished 5 rounds of Vidaza and am awaiting results from latest bone marrow biospy. I too have cheated death, but where there's breath, there is hope. The great thing about this site is the amount of information as to what is out there and you have access to people all over the world. The hard part is "Everybody is Different"...I used to hate to hear that, over and over, but it's so true. From results to side effects and tolerances, you just can't predict.
My counts the other day were WBC 2.8; Hgb 10.4, Plts 28k----that is good for me! Means I didn't need a transfusion for a whole week! To look at me, you'd never know...
How does your dad FEEL? I feel pretty good for as sick as I am; I live alone, am independent and get to chemo and hospital on my own. I am grateful for that. I don't have the bruising I did originally--who knows how low my platelets were at that time....they have been as low as 2 ! with no effects...
I was originally diagnosed with AML and given 3 months...that was 15 months ago....now I have MDS...hopefully the AML is still at bay, after a grueling course of induction chemo and bad sepsis....

Numbers don't matter, time left, all of that...Try Vidaza! There are other meds as well! What is his doctor saying? Why is he stopping the Procrit?
Live as best you can and enjoy every moment...and fight like hell....it's the Jersey way!!!!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #6  
Old Wed Feb 2, 2011, 09:50 PM
mausmish mausmish is offline
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Join Date: Mar 2010
Location: Maryland
Posts: 450
Vidaza

My oncologist told me about one of her very elderly patients who was so ill, she was sure they would not live out the week. As a last ditch effort, she tried Vidaza. A year later, the patient is not only still alive but thriving, feeling better than they had in years. Vidaza doesn't work for everyone but when it works the results can be amazing.
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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 Feb 3, 2011, 11:02 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Laura!

Since your Dad isn't interested in joining the forum yet, it's great that you are gathering information to help him. Fighting this disease benefits greatly from a team effort.

I'm kind of surprised, given what you've told us so far, that your Dad isn't already on Vidaza. It's become pretty much a standard frontline therapy for folks with higher-risk disease. Maybe the docs are worried that his platelets are so low already it would be problematic to give him Vidaza, since it often lowers platelets even further before it begins to work. It would be a good to understand why his docs haven't recommended it.

There's a similar drug called Dacogen that works pretty much the same way as Vidaza. And there are a number of clinical trials out there of new drugs and combinations of drugs for higher risk patients.

So there are some options; I would think your Dad's docs would be exploring them with him.

He's lucky to have a daughter working with him on this.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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