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MDS Myelodysplastic syndromes

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  #1  
Old Wed Jun 4, 2008, 09:51 PM
knstone knstone is offline
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Location: Cincinnati, OH
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4 Years+ with MDS under control

Hi fellow MDS patients,
My 11th BMB since diagnosis in Feb 04 continues to show no dysplastic cells in any blood line. I was at 16% blasts in April 04. I started Thalidomide and it controlled the MDS for 2.5 years. I have no chromosome abnormalities. I'm a good responder to Procrit and Neupogen.

Revlimid was started in Dec 2006 at 10 MG/day. It has controlled my MDS for 18 months. My platelets have slowly dropped and are now in the 78-85 range. The doctor is having me pause Revlimid until the platelets rise above 90. It will be restarted at 5 mg/day. My Hgb ranges from 12.9 to 14, WBC ranges from 2.5 to 3.8. My case shows that Revlimid can work with patients that are not -5q.

When I started treatments there were no drugs specifically for MDS, now we have at least 3.

All of us with MDS respond differently. A positive attitude and finding a knowledgeable doctor with which you are comfortable can help in battling MDS. I find the more I learn about MDS the more "empowered" I feel in dealing with the disease. I'm fortunate to be a good responder to all the medications used thus far.

Keep a positive attitude as you fight MDS.
__________________
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #2  
Old Thu Jun 5, 2008, 04:50 PM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Kirby.

It's always good to hear from you and I'm glad to know things are still going well for you with Revlimid. Wouldn't if be great if researchers could study why you are such a good responder and clone that "talent" for other patients?

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #3  
Old Sun Jun 8, 2008, 04:57 PM
flowerlady flowerlady is offline
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Hi Kirby!

Once more you are an inspiration to those of us who started this journey with so much fear...I am approaching 1 year on Revlimid and have had my dose reduced from the 10mg to the 5mg and can happily say that the sun is shining brightly here! Still alot of uncertainty as far as how long the sun will continue to shine but, till then....I'm keeping my shades on! How are your hostas?

With much appreciation for you being you!
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Flowerlady, 49, Diagnosed MDS 5q- 06/07, Revlimid 07/07 - 11/08. Vidaza 12/08 - 3/09. Allogeneic Stem Cell Transplant 4/14/09.
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  #4  
Old Sun Jun 8, 2008, 05:06 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by Ruth Cuadra View Post
Hi, Kirby.

It's always good to hear from you and I'm glad to know things are still going well for you with Revlimid. Wouldn't if be great if researchers could study why you are such a good responder and clone that "talent" for other patients?

Regards,
Ruth
This study is still looking for volunteers.

http://clinicaltrials.gov/ct2/show/N...sia%22&rank=13
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #5  
Old Mon Jul 28, 2008, 01:00 PM
LeslieAnn LeslieAnn is offline
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Smile Response to "4 Years + . . ."

Kirby:
I was so relieved to read your message because your profile is somewhat similar to mine. I was diagnosed with MDS - RAEB-II exactly one year ago. My doctor recently discontinued my treatment of six months - a trial that combined Vidaza with an experimental drug. There was no apparent impact one way or the other. So I just last week started Revlimid. I was rather skeptical when the doctor first proposed it becuase the literature associates the drug with 5q deletion patients. Like you, I am not 5q. (I am 20q and 13q). I realize that everyone is different. But it is good to know that Revilimid has shown promising impacts on non-5q patients.

Also, thanks for reminding me how important it is to maintain a positive attitude. It was quite a shock to receive my diagnosis at 52 years of age and at a stage in my life when I was feeling my best ever.

All the best.
Leslie
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Leslie, 53, diagnosed MDS July 2007, RAEB II, 20q and 13 q del, currently taking Revlimid.
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  #6  
Old Tue Jul 29, 2008, 05:18 PM
knstone knstone is offline
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Revlimid for non -5q

Hi Leslie,

Hope Revlimid works for you.
This link should go to an article on Revlimid response for Non -5q patients:

http://bloodjournal.hematologylibrary.org/cgi/content/
full/111/1/86?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=lenalidomide&searchid=
1&FIRSTINDEX=0&sortspec=relevance&resour[/url]
cetype=HWCIT

Are your blood counts at reasonable values?
__________________
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #7  
Old Tue Jul 29, 2008, 05:21 PM
knstone knstone is offline
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Sorry link didn't work

Hi Leslie,

The link didn't seem to work on last email, try this one.

http://bloodjournal.hematologylibrar...urcetype=HWCIT

If this doesn't work try copying and pasting into your browser.
__________________
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #8  
Old Thu Jul 31, 2008, 12:13 AM
LeslieAnn LeslieAnn is offline
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Thanks for the article

Kirby:
Thanks for the article. The second link worked.
As for my blood counts, it depends on what is considered "reasonable." I am fairly active (work full time, dance 2 -3x/wk, take Pilates, etc.) and feel fine doing all of that until my hemoglobin drops to somewhere around 7.5. By the time it gets to 7.1 or so, I get a transfusion. It typically goes up to around 9.7 after a transfusion. On average, I need a transfusion once/month. My WBC fluctuates between 1.5 and 1.1. My platelets fluctuate between 315 and 130.
Thanks again for the article.
All the best.
Leslie
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Leslie, 53, diagnosed MDS July 2007, RAEB II, 20q and 13 q del, currently taking Revlimid.
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  #9  
Old Thu Jan 31, 2013, 04:03 PM
DeborahZPeterson DeborahZPeterson is offline
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Location: Lake Wales, FL, USA
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New MDS Diagnosis

Hi Kirby. I found your name on the MDS Foundation website. My sister, Marilyn, was just diagnosed with MDS yesterday. She is a member of Jehovah's Witnesses. I wanted to see if you could contact her via email or telephone for information and encouragement. I tried to send you an email or a private message but I didn't have permission to do so.

If you would be willing to contact my sister, I'd be happy to provide her email address or telephone number.

Sending Christian love,
Deborah Peterson
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  #10  
Old Sun Feb 3, 2013, 08:15 AM
knstone knstone is offline
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Location: Cincinnati, OH
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Hi Deborah

Please contact me.

Nancy and I would love to talk with you or your sister.

With love,
Kirby Stone
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #11  
Old Wed Feb 20, 2013, 12:37 PM
Neil Cuadra Neil Cuadra is offline
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Kirby Stone passed away last night after a long battle with MDS.

Kirby was a personal friend and an inspiration to many patients and caregivers in the community of those battling bone marrow failure diseases. We offer our condolences to his wife Nancy and the rest of his family. This is a loss we all feel.

Please see Kirby's Legacy in his Marrowforums Personal Profile.
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  #12  
Old Wed Feb 20, 2013, 01:38 PM
Birgitta-A Birgitta-A is offline
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Kirby

How very sad! I admired him.
Warm regards
Birgitta-A
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  #13  
Old Wed Feb 20, 2013, 06:06 PM
Al's Wife Al's Wife is offline
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Kirby will certainly be missed. But what a great
legacy he leaves behind. Thoughts and prayers
go out to his wife Nancy.
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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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  #14  
Old Thu Feb 21, 2013, 08:00 AM
Sally C Sally C is offline
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My deepest sympathy to Nancy and all those who loved Kirby. "Kirby's Legacy" is a great tribute to an obviously wonderful man who stood by his faith - and never gave up. His last post just days before he passed away showed what a kind man he was. May he rest in peace...
Sally
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  #15  
Old Thu Feb 21, 2013, 03:15 PM
Lbrown Lbrown is offline
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Sorry to hear about Kirby.

Deb
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  #16  
Old Thu Feb 21, 2013, 09:56 PM
bebop bebop is offline
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that is so sad! for Nancy I am so sorry for your loss. May God bring you peace and comfort during this rough time.
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  #17  
Old Fri Feb 22, 2013, 02:10 PM
Mary Stone Mary Stone is offline
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Location: Oklahoma City, Oklahoma
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Thumbs up

I registered in this forum today to remember my cousin - Kirby Lee Stone of Cincinnati, OH. As you all know, he has passed away. The fact that he struggled with and maintained his composure and dignity with this disease was admirable. Never in my life (not just saying this bcuz he is my cousin) have I ever met a more honorable, decent human being than my cousin Kirby. I want to thank all of you for any support you have given him throughout the years and also, if he helped you (or a loved one with this disease) in the process - then you KNOW what I mean when I say what a kind, sweet, considerate and thoughtful person he was. He will truly be missed.
Thx everybody for the kind words.
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  #18  
Old Thu Mar 14, 2013, 06:53 PM
cathybee1 cathybee1 is offline
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Logged in today after a long absence from the forums to find this sad news. Kirby was so thoughtful, he checked in via e-mail just to see how Bruce was doing. A class act, and an inspiration. I know his family is missing him terribly.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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