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MDS Myelodysplastic syndromes

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  #1  
Old Sun Nov 24, 2013, 01:34 PM
GoingOcean GoingOcean is offline
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Husband has MDS; transformed once to AML

Hi Everyone,

My husband, Steve, was diagnosed with AML a few months ago, with underlying MDS. I never saw anyone get that sick, that fast. Really shocking. Went through induction therapy and (as far as we can suss) in remission from the AML.

Steve's doctor isn't very clear or specific regarding the MDS except to say that the AML will come back at some point.

Very aggravating attitude from his heme oncologist - makes me want to smack him with a herring.

Steve is currently getting azacitidine (sp) 5 days a month and gets transfused at least twice a month (sometimes more) - I'm going to try to pin the doc down to what the rating is for Steve's MDS - wish me luck in not strangling his doctor...lol.

Have any of you had (or are having) this experience with your MDS?

What should we be asking now?

Thanks so much for being here - so many of your stories are so inspiring - it's comforting to know that there's hope for many.

Kat "GoingOcean" McLaughlin
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  #2  
Old Sun Nov 24, 2013, 02:39 PM
Neil Cuadra Neil Cuadra is offline
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Kat & Steve,

The first thing I would ask is where to find a more cooperative hematologist! A doctor who is not clear or specific isn't a team player, and is leaving you to wonder and worry rather than sharing the facts and letting you be on the team. Steve might be getting exactly the right care, but how would you know? No wonder it's frustrating for you.

There are a number of well-regarded hospitals with AML and MDS expertise in the Los Angeles area. Perhaps you can get a second opinion at one of them.

As things stand, you need more information about Steven's MDS. What subtype? What "blast count"? What are his scores on the prognostic scales? Why does the doctor expect the AML to return? I suggest that you collect copies of Steve's test results, from CBCs to bone marrow biopsies. Perhaps Steve's doctor will realize that you want to share in responsibility for his care and that you want to understand what is going on and what choices there are for dealing with it. It's sometimes hard to speak to a doctor frankly, but any good doctor will appreciate a patient (and spouse) who explain what they want to know, ask questions, and listen to the answers. If you don't say much, some doctors tend to lecture without knowing if you're "getting it".

You are correct about the drug. It's called azacitidine or 5-azacytidine or by its brand name, Vidaza.
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  #3  
Old Sun Nov 24, 2013, 02:44 PM
Birgitta-A Birgitta-A is offline
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MDS

Hi Kat,
Good that Steve is in remission!

As you probably know it can take several months before you will know if Vidaza will have any effect. The drug is used in AML too with positive results.

Hope some member who transformed to AML and got treated for that will respond about that experience.

How old is Steve? Is he healthy except for the MDS? He should ask for a stem cell transplant as soon as possible if he can get that treatment.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. positive results with Thalidomide + Prednisone 2010-2013. Now trying Revlimid though I don't have the 5q- chromosome aberration.
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  #4  
Old Mon Nov 25, 2013, 11:29 AM
GoingOcean GoingOcean is offline
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Neal, Birgitta... :)

Thanks, Neal - I'm going to the December appointment and going to try to get more answers - this doctor is very quiet and says very little except that Steve should "try to relax" - I actually asked him what his experience was in this field as he was just so creepy about how Steve is doing - creepy meaning silence and odd smiles.

Thanks also, Birgitta - Steve is 55, and in pretty good health (mild COPD from years of earlier smoking, but managed). This doctor (and several others, to be fair) keep saying that Steve isn't eligible for transplant, however, not one has given me a concrete reason as to why. All of the doctors have stated that Steve will never be able to discontinue treatment - apparently, he'll be on some kind of chemo until his passing. Again - no concrete reason as to why Steve can't try a transplant if he chooses to.

Steve really doesn't want a transplant and I stand behind whatever decisions he makes regarding his body, mind, and health - but here's where I stand on transplants and care - if Steve ever decides he WANTS to roll the dice and we have a great donor, and he can take it physically, then Steve should be allowed that option. I'm not going to allow anyone to deny him opportunity, if he's up to it.

Neither one of has ever been seriously ill and this is so frustrating.

Thanks for listening...

Kat
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  #5  
Old Mon Nov 25, 2013, 01:38 PM
sbk007 sbk007 is offline
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GoingOcean,
MDS has a habit of converting to AML. AML can be put in remission but it invariably comes back. Same with some of the subclasses of MDS. Its possible your doc is telling you your husband had MDS and it transformed to AML before being diagnosed as MDS. The timing as you put it. Its possible for MDS to go unnoticed till its too late. Some people don't have symptoms.
In any case its not easy to relax. Great advise but not easily done.
When you say more than one Dr. told you he's not eligible for transplant but the answers to why not aren't concrete what were the answers? This is important if he wants to go forward with it but a moot point if he doesn't want the SCT. If the doctor gives you bad vibes, doesn't look you in the eye, or makes you uncomfortable its not unreasonable to ask for a different Hematologist.
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  #6  
Old Mon Nov 25, 2013, 03:17 PM
Birgitta-A Birgitta-A is offline
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MDS

Hi Kat,
It is easy to understand that Steve really does't want a transplant. When I got my dx I was 67 yo and too old for transplant in Sweden. I was thankful that I didn't have to consider that question.

Steves situation is different - he is young, fit and his disease is more advanced. It is true that he will be offered different kinds of chemo with adverse effects that will decrease his quality of life.

A transplant can be very complicated too and we never know the final result until we are there. If he changes his mind and wants a transplant it is important to prepare for that while he is in remission - after next chemo treatment he can be more ill.
Kind regards
Birgitta-A
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  #7  
Old Mon Nov 25, 2013, 08:15 PM
katgio50 katgio50 is offline
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My husband had MDS and was treated with only Procrit shots for 18 months. It then transformed into AML with 50% blasts. He had induction and attained remission. He is now undergoing the stem cell transplant and he is 74 years of age. He is in great physical condition, but I see many other patients undergoing this procedure that are seemingly not in as good of shape. It is imperative that you go to a doctor that you are both comfortable with and that is very knowledgeable on both of these diseases and can share that information with you. This is not the time to throw in the towel and "go with the flow". Learn all you can and then make the right decision for you.
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  #8  
Old Tue Nov 26, 2013, 08:56 AM
DebS DebS is offline
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I agree with everything that everyone has said here. You need to take a breath and move forward. There are FAR too many doctors and it is FAR too important to Steve to be putting up with mediocre ones!

After your breath, actively seek answers. You are definitely not getting them. There are so many experts and wonderful doctors dealing with these diseases on a daily basis. Their knowledge is unbelievable on this very complicated subject.

Keep checking back here for support. That is a huge lifeline for you!

Good luck and God bless!

Deb
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  #9  
Old Sun Dec 8, 2013, 02:54 AM
GoingOcean GoingOcean is offline
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Angry More answers - finally.

Steve's appointment went better - we were able to find out that he is RAEB-T, and his risk assessment is off the scales - to quote, "beyond high risk". So, not great news. He's getting 100mg of Azacitidine x 5 days a month, off for approx. 21 days.

Doc says, he'll be on the Azacitidine for the rest of his life - luckily, he doesn't suffer any side effects and it seems to keep the AML pushed back and the MDS manageable.

I still can't believe that this is happening to him and fight my internal anger constantly.
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  #10  
Old Sun Dec 8, 2013, 06:23 AM
Birgitta-A Birgitta-A is offline
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MDS

Hi Kat,
Very positive that Vidaza is making Steve's MDS manageable! Still I Think you should do as other members recommended - try to get a second opinion because Steve is too young to accept taking Vidaza and waiting for the AML to return.
http://asbmt.affiniscape.com/associa...nStatement.pdf
Kind regards
Birgitta-A
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  #11  
Old Thu Jan 9, 2014, 06:38 PM
GoingOcean GoingOcean is offline
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Unhappy Back to AML

Steve has transformed again - headed back to San Diego for a BMB and most likely try to get him back into remission if we can.
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  #12  
Old Thu Jan 9, 2014, 07:33 PM
bailie bailie is offline
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GoingOcean,

Do you have any numbers for Steve's condition? Blast count, white, red platelets?

I am also having Vidaza treatments.

I wish you both the best.
__________________
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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  #13  
Old Fri Jan 10, 2014, 03:16 PM
GoingOcean GoingOcean is offline
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Bailie

Hi Bailie -

Steve's white count is in the 120s, his hemoglobin is 7.4, his platelets are 54 right now... they've started him on Hydroxyurea to try to get the white count down and he'll get blood today, of course.

They'll be transporting him from Loma Linda to San Diego on Monday.

Kat
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  #14  
Old Fri Jan 10, 2014, 04:06 PM
bailie bailie is offline
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Good luck, hopefully they can get this turned around. Any news on transplant? Did you ever hear the doctors mention a blast count?
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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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  #15  
Old Fri Jan 10, 2014, 09:12 PM
Kathy S Kathy S is offline
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Going Ocean
Just a question as to why Steve is on Vidaza only 5 days a month. All doctors that my husband went to said he should be on 7 days a month which he did until he went into remission. He is now on 5 days a month, but that was my husbands decision because of the side effects he has with it (headaches, tired, just not feeling great). the doctors would not have let my husband go to 5 days if he had not gone into remission. Just wondered their reasoning.
Thoughts are with you that you will find answers for yourself and Steve.
Blessings, Kathy
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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  #16  
Old Fri Jan 10, 2014, 10:30 PM
mausmish mausmish is offline
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Mine was 5 days per month. My local hematologist said that studies show it is just as effective as 7 and not so hard on the counts. I responded extremely well. Some places do 10 days! I think it's difficult to determine conclusive results in studies because the disease and the response to treatments differs so much from person to person.
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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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  #17  
Old Fri Jan 10, 2014, 10:59 PM
bailie bailie is offline
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Mausmish,

Did you have the "mini" transplant? Your success is very encouraging.
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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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  #18  
Old Sat Jan 11, 2014, 12:27 AM
mausmish mausmish is offline
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bailie,

I had a full myeloablative transplant, 10/10 matched unrelated donor, at Johns Hopkins on 30 Nov 2010. Busulfan and fludarabine conditioning chemo before and cytoxan chemo after instead of immunosuppressants. I also had 10 Vidaza treatments post transplant. It is theorized but unproven that it helps train the new immune system to target disease.

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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  #19  
Old Sat Jan 11, 2014, 06:28 PM
Diver down Diver down is offline
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Timing of Transplant

I am the wife of diver down. MDS Diagnosis 10/2013 pancytopenia and very complex cytogentics; Just finished cycle 3 SQ Vidaza- BM bx just before cycle 3 stable but still with 10-15% blasts; next week will be meeting with transplant doc - 10/10 donor identified; Still with pancytopenia and require blood transfusion every 2-3 weeks; will meet with team next week to discuss going directly to transplant now vs AML type induction chemo vs continuing on the same course with vidaza-( though they do not think the same course will offer response)
has anyone gone directly into BMT without getting blasts down <5-10%?
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  #20  
Old Thu Jan 23, 2014, 07:22 PM
dougr dougr is offline
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Hi Kat Mac, everything that happens during my Dr.s appointment is written by my Hem-Onc is on line in my records. You may try to establish a user name and password to access all records which you paid for and have a right to have. After every visit my site is reviewed to see where we are and what is planned.
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Dx pending Jan.2014; 68 yo, BMB in two weeks, WBC dropping fast....CLL dx 2011; Trisomy 12
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