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MDS Myelodysplastic syndromes

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  #1  
Old Thu Jan 15, 2015, 12:49 PM
ilovemymom ilovemymom is offline
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new to forum and need help in mds raeb 2

Hello from Chennai, India.. My mom who is 52 was initially diagnosed with myeloproliferative disorder in June 2013... And she was on hydroxyurea tabs for about a year and suddenly last month she started experiencing extreme weakness and heart beating fast and severe coughing .. After a blood test it was revealed that her blood count had gone to 5 and had a couple of blood transfusions ... After that she felt a little better and then we had another bone marrow test done... Now the report says her disorder has transformed into mds raeb 2 and the haematologist here says its aml and has started her first chemo session with vidaza and dacogen... All of us including ny mom are completely shattered...

Now my doubts here are, I want to know the prognosis for this condition and also if chemo is helpful.. Doc has suggest a bone marrow transfer if required also... I love my mom to bits and cannot think of a world without her.. She is just 52 and has not enjoyed anything yet in life.. I want to know how many years do ppl with such conditions live... Someone pls give me more confidence that she will live longer.. Pls give me more knowledge and information about her condition.. Has anyone here been in this situation ??

Eagerly waiting to see all your positive responses ..

Harini

Last edited by ilovemymom : Thu Jan 15, 2015 at 12:51 PM. Reason: gramatical mistske
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  #2  
Old Thu Jan 15, 2015, 05:44 PM
DanL DanL is offline
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I am very sorry to hear of your mom's diagnosis. If your mother has been staged at RAEB2, she should begin treatment pretty quickly Vidaza and Dacogen are common front-line treatments, but a bone marrow transplant is the only known cure for the disease. Depending on your mother's situation, the doctors may try to reduce the amount of MDS cells with Vidaza, Dacogen, or some other chemotherapy drugs and then try transplant.

There are many members on this forum who have been in your mother's situation, some have opted for transplant and done well, others either chose not to seek transplant, were not healthy enough for transplant, or did not have suitable donors and received treatment.

If your mother is in otherwise good health, transplant does represent a good possibility for long-term survival.

I wish you the best of luck in seeking the right solutions for your mother.
__________________
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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  #3  
Old Fri Jan 16, 2015, 02:21 AM
ilovemymom ilovemymom is offline
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Thank u so much.. That was very helpful... And I want to know what is the life expectancy if the BMT is successful ?? I want to hear more success stories ...
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  #4  
Old Fri Jan 16, 2015, 06:46 AM
Mseth Mseth is offline
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Hi Harini,

Sorry to hear about your mother's diagnosis. The question you are asking on life expectancy and prognosis after BMT is very different from person to person, and will depend on many things including patient health, donor match etc.
You can use the search function on this forum, and read many stories on successful BMT. You can also note how members have handled issues relating to pre and post transplant. It will prepare you to know the kind of care that is required if your mother chooses to go through BMT.
I have also read from other forum members posts that Vidaza or Dacogen are the first treatments that are given. Vidaza has been very recently introduced in India, by Intas Pharma, prior to this only Dacogen was available. Is she receiving Vidaza or Dacogen?

Hope you will find the best treatment and right answers to your questions.
__________________
Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #5  
Old Fri Jan 16, 2015, 11:38 AM
DanL DanL is offline
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Life expectancy after transplant is hard to gauge. Most of the statistics that are available are based on longer-term experience, meaning that some of the data goes back to include 30 years of transplant history, so the numbers may skew the success rate down, and the numbers are very difficult to apply to any patient, because many studies are retrospective and include a wide variety of disease statuses at transplant, different methods of conditioning, and different methods of dealing with complications like graft versus host disease. It is believed that outcomes are getting better, but most of the survival data that we see is based on 1 and 2 year outcomes. It is generally believed that if a person can go 2 years without relapse after transplant that the odds of a relapse become pretty low and long-term survival increases dramatically. Some of the complications include late infections and GVHD which can be challenges for years after transplant.

http://www.mdsbeacon.com/news/2011/0...term-survival/

http://jco.ascopubs.org/content/29/16/2230.full

Unfortunately, we cannot predict outcomes, but some of the evidence shows that lower disease burden at the time of transplant is an important factor in determining success. I cannot find the article now, but the National Institute for Health had a study showing that it was important to be below 12% or 13% blasts heading in for higher success rates, but there are certainly other very important factors such as underlying health conditions as measured by the comorbidity indices.
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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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  #6  
Old Fri Jan 16, 2015, 01:12 PM
ilovemymom ilovemymom is offline
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Thank u so much for your responses... I am glad Mr. Seth is from new Delhi... I know I am asking lame and stupid questions but I have been devasted since I need my mom under any circumstances.... My mom is on both vizada and dacogen... When I read the internet all the articles are soooooooooo scary .. Sometimes I fear that she might leave me and go away too... I have cried and cried enough... But manage not to cry in front of her and give het confidence... I want to really know if there medicines will kill her ?? Will she ever come back home ???? She has never had a good life. It is now that she was slowly seeing a comfortable life when this happened... I want her with me m.. Please pray for her.. I don't know why but doc is bot giving any information on her prognosis and just insists that my brother come earlier .. He lives in Sydney... I am devasted.. Someone pls give me hope ... 😢
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  #7  
Old Fri Jan 16, 2015, 02:01 PM
Mseth Mseth is offline
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Hi Harini,

I too am on this forum for my mother, and I am her daughter.

It's natural to be very emotional and very scared when you hear of this diagnosis. We have all gone through this stage. Over time, you will learn and understand much more, and can ask the doctor relevant questions. You seem to be young, so it may be better for you and your mother to have your brother around initially, for support.

On Vidaza/Dacogen and transplants, I don't have much information, other than what I read here. Maybe you can post this as a separate thread, if anyone is on both Vidaza and Dacogen. I have read of Vidaza or Dacogen, and some have had great response, with either, with blasts coming down and counts returning to normal. There are statistics on average time to response etc, and forum members who have experience with these treatments will be able to give you this information more accurately.

It is NOT a hopeless situation, so don't lose hope.

Wish you and your mother the very best.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #8  
Old Sat Jan 17, 2015, 01:12 AM
ilovemymom ilovemymom is offline
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Hi Ms. Seth... Yes I am just 28 and I am clueless about this whole situation... I also reside in Delhi... I have come down to Chennai to look after mt mom now... After the chemo is over I am planning to bring my mom to Delhi to rest for a while... It will be really helpful if I can stay in touch with u foe more help in Delhi as I have just relocated there ...

Thank u so much for the kind words and encouragement ...

All the others in similar situation ... Please tell me what does the 10% blasts mean ?? I want more information on BMT... Is it very dangerous ?? I am really scared .. My mom is really young and don't want to spoil her health
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  #9  
Old Sat Jan 17, 2015, 01:17 AM
ilovemymom ilovemymom is offline
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Hi all... I spoke to the doc today and asked him if my mom has mds raeb 2 or aml and he said she was in mds raeb 2 stage a month back and now progressed to aml itself... What does this mean ?? What is the difference ?? What are the risks like right now ??
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  #10  
Old Sat Jan 17, 2015, 05:19 AM
Mseth Mseth is offline
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I have sent you my local contact details in a private message, on this forum.

For the questions you are asking, it may be better you start a new thread, with the specific question you are asking.

To understand diff between MDS and AML, you can read the MDS classification and other information under MDS on the home page of the forum. The forum is easy to navigate through and if you spend time reading through older posts, you will have a good idea and answers to some of your question already.

Blasts are abnormal blood cells, and a higher % indicates a more serious form of the disease.

Read up as much as you can, it will help you understand and know that there are treatments which can help.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #11  
Old Thu Oct 12, 2017, 04:22 AM
ritu ritu is offline
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Hi

I am also from Delhi and my Mom has been diagnosed with MDS RAEB-2. Need ou help to discuss further please provide your contact details.
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  #12  
Old Thu Oct 12, 2017, 04:28 AM
Mseth Mseth is offline
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Quote:
Originally Posted by ritu View Post
Hi

I am also from Delhi and my Mom has been diagnosed with MDS RAEB-2. Need ou help to discuss further please provide your contact details.
Pls send me a pm through the forum, with your local contact. I can call you. If you are unable to pm post your contact here.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #13  
Old Mon Oct 30, 2017, 03:37 AM
ritu ritu is offline
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Mother Diagnosed with MDS RaEB-2

Hi

My mom has been diagnosed with MDS REEB-2 last month and had her first cycle of Vidaza and one unit blood transfusion. Her nos climbed up after treatment but WBC are still low. She has been facing problems with breathing. Docs have got all the test done it is nothing related to lungs or Heart. But she is very uncomfortable due to this. Any idea why is it happening. Too worried for her I dont know how to proceed from here
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  #14  
Old Thu Nov 16, 2017, 02:25 AM
ritu ritu is offline
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Quote:
Originally Posted by Mseth View Post
Pls send me a pm through the forum, with your local contact. I can call you. If you are unable to pm post your contact here.
Hi

I have left my number on your PM. Please call me or share your number.

Regards
Ritu
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