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MDS Myelodysplastic syndromes

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  #1  
Old Sun Mar 9, 2008, 04:31 PM
kmiller kmiller is offline
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MDS now AML and heading for transplant, Kelly M, age 42

I thought I'd give an update; I posted several mos. ago w/a new dx of MDS.

A lot has happened since then! Johns Hopkins and local doctor put their heads together and decided my issue looked to be more AML than MDS and suggested immediate induction chemotherapy, which I did in late Dec. into January (3-plus weeks in the hospital - yuck). I then had a round of outpatient consolidation chemotherapy.

A bone marrow biopsy done somewhere in there showed a very few trisomy 8 cells still left in my marrow. While the Hopkins doctor and my local doctor thought this might be curable w/chemo alone, my own research left me feeling unsure about this plan. I consulted with Dr. Yanovich at University of Maryland Medical Center (he came highly recommended by a friend). We found him to be very kind, while also highly informed/experienced ( a good combo).

He shared with us that my situation was a textbook case of "intermediate risk" AML, meaning I have one intermediate-risk genetic mutation (trisomy 8) and I'm early middle-aged, so the treatment approach isn't necessarily clear. In his opinion, the prudent plan is to do an allogenic transplant now, rather than hope that chemo will take care of things and have the transplant as a backup plan. He says that after relapse, transplant my be less sucessful. And I have the very great luck to have a good match in my very willing brother.

So, it looks like I will be admitted on Mar. 19 for transplant. This is all happening so fast, but in my heart I believe this is the best plan for me. I didn't like the idea of many more months of outpatient chemo, with the idea that I may end of needing a transplant at some time in the future. Cut to the chase!

I wonder if anyone else out there has had a similar experience of having a borderline or questionable MDS vs. AML dx. I'd also appreciate any words of wisdom from any transplant survivors out there. Thanks for letting me share, Kelly
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  #2  
Old Sun Mar 9, 2008, 10:27 PM
Zoe's Life Zoe's Life is offline
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Kelly,

I don't have any info for you, but I did want to wish you the best. Sometimes life does move fast, sounds like it is on a good fast track for you.

Zoe
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  #3  
Old Mon Mar 10, 2008, 06:39 AM
Birgitta-A Birgitta-A is offline
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Thumbs up SCT

Hi Kelly,
Like Zoe I canīt give you any info about experience of having a borderline or questionable MDS vs. AML dx only wish you luck with the stem cell transplantation. The drugs for treating complications are getting better every month. Hopefully you will be cured from MDS/AML!
Kind regards
Birgitta-A
68 yo (too old for SCT), MDS Interm-1 dx May 2006, tansfusion dependent, Desferal 4 days every 6th week with transfusion, Neupogen 2 injections/week, waiting for Eltrombopag for low platelets (now 48), asymptomatic
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  #4  
Old Mon Mar 10, 2008, 08:48 PM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Kelly.

I wanted to offer some words of encouragement as a transplant survivor. I had a bone marrow transplant for MDS in 1998 at age 43--much the same situation as you are in except that my MDS hadn't yet transitioned to AML. From what I've learned over the years, I think your doctor is correct in saying that a transplant for relapsed AML would be more difficult than doing it before you have more chemo. Since you have a matched sibling donor, the prospects of curing your AML via transplant are very good.

You can read about my experience here, but keep in mind that what I describe happened almost 10 years ago. Treatments have improved so they are less harsh and more effective, and patient care has improve so they are much better at keeping you comfortable and spotting potential problems before they get out of hand.

Will you have your transplant at Univ. of Maryland? Post any questions you have in this thread, or send me a private message if you'd like to talk offline.

Best regards,
Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #5  
Old Tue Mar 11, 2008, 10:10 AM
Tom M Tom M is offline
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Kelly, I wish all the best for you. You will be in my prayers.
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Tom, age 56, diagnosed with MDS RAEB Oct of 2006. Previously treated w/ vidaza, unsuccessfully. Revlimid successful 1 year. Progressed to AML 4/08 w/ 20% blasts, now in remission. BMT to take place 10/08.
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  #6  
Old Fri May 9, 2008, 01:30 PM
Alison Alison is offline
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Quote:
Originally Posted by Ruth Cuadra View Post
Hi, Kelly.

I wanted to offer some words of encouragement as a transplant survivor. I had a bone marrow transplant for MDS in 1998 at age 43--much the same situation as you are in except that my MDS hadn't yet transitioned to AML. From what I've learned over the years, I think your doctor is correct in saying that a transplant for relapsed AML would be more difficult than doing it before you have more chemo. Since you have a matched sibling donor, the prospects of curing your AML via transplant are very good.

You can read about my experience here, but keep in mind that what I describe happened almost 10 years ago. Treatments have improved so they are less harsh and more effective, and patient care has improve so they are much better at keeping you comfortable and spotting potential problems before they get out of hand.

Will you have your transplant at Univ. of Maryland? Post any questions you have in this thread, or send me a private message if you'd like to talk offline.

Best regards,
Ruth Cuadra
Hi There

With the improvement of drugs would you say that at 61 years of age my Dad would be too old for SCT considering all that you went through? He is pretty fragile although his third cycle of Vidaza seems to have improved his counts.

Regards
Alison
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Alison, daughter of Rod aged 61; Dx May 2007; was on Neupogen and Eprex Aug - Dec '07; Vidaza recommended 6 cycles starting Jan '08, only 5 cycles completed. Chemotherapy commenced: July '08 - Feb - '09. Cytarabine & Daunarubicin. Transfusion dependent.
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  #7  
Old Fri May 9, 2008, 02:43 PM
Birgitta-A Birgitta-A is offline
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SCT

Hi Alison,
Here is an abstract from specialists in SCT - as you se the 2 year overall survival is 53 % with the reduced-intensity conditioning.

We donīt know much about the outcome for your dad with new drugs. Vidaza can be combined with new effective drugs called histone deacetylase inhibitors like Zolinza. Then you can treat low WBC:s with Neupogen and a new drug for low platelets (Eltrombopag/Promacta) will perhaps be approved this summer.

"Reduced-intensity conditioning for allogeneic hematopoietic stem cell transplantation with fludarabine and melphalan is associated with durable disease control in myelodysplastic syndrome.
Bone Marrow Transplant. 2007 Nov;40(9):843-50.
Nakamura R, Rodriguez R, Palmer J, Stein A, Naing A, Tsai N, Chang K, Slovak ML, Bhatia R, Spielberger R, Kogut N, Pullarkat V, Kirschbaum M, Forman SJ, O'Donnell MR.
Division of Hematology/Hematopoietic Cell Transplantation, City of Hope Comprehensive Cancer Center, Duarte, CA 91010, USA

We retrospectively evaluated the outcome of reduced-intensity conditioning followed by allogeneic hematopoietic stem cell transplantation in 43 patients with MDS or AML arising from MDS. hematopoietic stem cell transplantation

All patients received fludarabine plus melphalan followed by an allogeneic hematopoietic stem cell transplantation from an HLA-identical sibling (n=19) or unrelated donor (n=24). Median age was 58 years (range: 30-71). Diagnoses at transplantation were RA (n=8), RARS (n=1), RAEB (n=13), RAEB-T (n=6), or AML arising from MDS (n=15).

Of 28 patients with MDS, two patients had low, 10 had intermediate-1, nine had intermediate-2 and seven had high-risk MDS by IPSS criteria. All patients initially engrafted with the median neutrophil recovery of 15 days (range: 9-27).

The 2-year overall survival, disease-free survival, relapse and transplant-related mortality were 53.5% (CI 45.2-61.1), 51.2% (CI 43.3-58.5), 16.3% (CI 7.9-30.7) and 35.2% (26.4-45.7), respectively.

Grade II-IV acute graft-versus-host disease occurred in 27 (63%) patients. There was no significant survival difference between sibling and unrelated donor hematopoietic stem cell transplantation, but the relapse rate was higher among sibling donor recipients when compared to unrelated donor (38.5 versus 7%, P=0.02). Reduced-intensity conditioning with fludarabine plus melphalan was associated with durable disease control and acceptable toxicity in this high-risk cohort."
Kind regards
Birgitta-A
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  #8  
Old Fri May 9, 2008, 05:33 PM
Ruth Cuadra Ruth Cuadra is offline
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Quote:
Originally Posted by Alison View Post
Hi There

With the improvement of drugs would you say that at 61 years of age my Dad would be too old for SCT considering all that you went through? He is pretty fragile although his third cycle of Vidaza seems to have improved his counts.

Regards
Alison
Hi, Alison.

I don't think age has as much to do with it as the patient's overall condition. Certainly the stronger, "healthier" person will be better able to withstand the side effects of the treatments and medications. Pre-transplant evaluations look at all of the body's systems to be sure there isn't one particularly weak point--such as heart or lungs--that might preclude transplant. I'm guessing that your Dad would have to be off Vidaza for a month? two months? before he could be transplanted.

A reduced-intensity transplant (sometimes called a mini-transplant) as Birgitta refers to, might be suitable. His doctor can advise you about the kind of protocol that would be used. Don't be discouraged by the survival rates reported in the medical literature as no one person is the "average" they predict. If half the people lived less than 2 years, then half lived longer!

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #9  
Old Sat May 10, 2008, 12:48 PM
Alison Alison is offline
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Hi

Thanks to you both. My Dad was in high spirits today, walking around our farm without his shirt on sunning himself, good colour in his cheeks. I couldn't believe it! Still no transfusion - it'll be 14 days tomorrow. His brother is going for a match this week coming and it seems like he's thinking very strongly along the lines of a SCT. I will definitely look into the mini-transplant which seems a viable option.

Regards
Ali
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Alison, daughter of Rod aged 61; Dx May 2007; was on Neupogen and Eprex Aug - Dec '07; Vidaza recommended 6 cycles starting Jan '08, only 5 cycles completed. Chemotherapy commenced: July '08 - Feb - '09. Cytarabine & Daunarubicin. Transfusion dependent.
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  #10  
Old Sat May 10, 2008, 02:43 PM
Birgitta-A Birgitta-A is offline
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SCT

Hi Alison,
Yes, with a SCT your dad can be cured - it is easy to understand that he probably will chose that treatment. Good luck with the match test for his brother !
Kind regards
Birgitta-A
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  #11  
Old Mon May 12, 2008, 08:04 PM
paulaespada paulaespada is offline
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Thank you Ruth!

Quote:
Originally Posted by Ruth Cuadra View Post
Hi, Kelly.

I wanted to offer some words of encouragement as a transplant survivor. I had a bone marrow transplant for MDS in 1998 at age 43--much the same situation as you are in except that my MDS hadn't yet transitioned to AML. From what I've learned over the years, I think your doctor is correct in saying that a transplant for relapsed AML would be more difficult than doing it before you have more chemo. Since you have a matched sibling donor, the prospects of curing your AML via transplant are very good.

You can read about my experience here, but keep in mind that what I describe happened almost 10 years ago. Treatments have improved so they are less harsh and more effective, and patient care has improve so they are much better at keeping you comfortable and spotting potential problems before they get out of hand.

Will you have your transplant at Univ. of Maryland? Post any questions you have in this thread, or send me a private message if you'd like to talk offline.

Best regards,
Ruth Cuadra
Dear Ruth!

I've been reading your story and this is a healing exercise for me.
My husband is diagnosed with MDS, no siblings and waiting for a blood marrow transplant.

I show my all strength to him but I'm bleeding inside.

I'm crying and I have nothing more to say to you than: Thank you! Thank you for being so far and being such a help to me and giving so much Hope.

Sincerely!
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Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010
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  #12  
Old Tue May 13, 2008, 12:17 PM
Ruth Cuadra Ruth Cuadra is offline
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Dear Paula,

It is very rewarding to know that what I have written has helped you. I think all the patients and caregivers in the AA/MDS community are an amazingly valuable resource for information and support. My fingers are crossed that a donor is found for your husband as soon as possible.

Please keep us posted.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #13  
Old Thu May 22, 2008, 06:58 AM
paulaespada paulaespada is offline
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Thank you Ruth

Quote:
Originally Posted by Ruth Cuadra View Post
Dear Paula,

It is very rewarding to know that what I have written has helped you. I think all the patients and caregivers in the AA/MDS community are an amazingly valuable resource for information and support. My fingers are crossed that a donor is found for your husband as soon as possible.

Please keep us posted.

Regards,
Ruth
Thank you Ruth!

I'm grateful I found this forum and I'll certainly keep you updated. I'm going to post one more topic.

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Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010
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