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MDS Myelodysplastic syndromes

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  #1  
Old Thu Aug 6, 2015, 06:46 PM
Maura R Maura R is offline
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Angry My mom was diagnosed today with MDS

Hi everyone,

Looking for some help here!! My mom was diagnosed with MDS today and from what the doctor told us, I'm blown away...the news was not good. I've done alot of reading on this disease, but have never seen anything that said it's terminal. I was basically told today, if we don't do any treatmenet, my mom will pass in 6 months...and with treatment, (1 pill a day for 5 days, once a month or 1 pill a day for 21 days.) and 2 visits to the doctor's a week for blood level check and blood transfusions. With this treatment, the doctor said my mom will have at least 1-2 years.
When asked what the side effects were, she really wouldn't commit to anything, so I'm asking anyone out there...what are we really up against here? How bad is the treatment going to be for my mom. I want her here with me, but I don't want her last few years left to be in pain or discomfort. Please help me understand what is happening...thank you so much!!!
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  #2  
Old Thu Aug 6, 2015, 07:08 PM
bailie bailie is offline
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I am sorry for your Mom's diagnosis, it is a real life changing shocker. The doctor was being very candid and that should be appreciated. They are in a difficult position when talking "time" because everyone is different. I had an acquaintance a few months ago who only lived about a month following diagnosis. Some people on this forum have lived for years. There are varying situations with MDS so learn the particulars of your Mom's diagnosis i.e. "blast count", platelet count, white cell count etc. Knowledge about the disease is very helpful. The only possible "cure" will be a stem cell transplant, otherwise the disease is "terminal".

What kind of "pill" did the doctor refer? There are different approaches. I was immediately put on Vidaza (subcutaneous shots for a week and then off for 21 days) following diagnosis. It just depends on what the diagnosis is. With the longevity mentioned I would think more than just the "pill" would be appropriate, but the doctor knows what is best. Most people tolerate the treatments well.

Age makes a difference with types of treatment also (the younger, the better). We aren't doctors on this forum, but we have a wealth of experience. So ask many questions and try to be as specific as possible with names and numbers.
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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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Old Thu Aug 6, 2015, 08:06 PM
Maura R Maura R is offline
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Angry Ballie

Thanks so much for the information. My mom just turned 81 this past June. We wouldn't of even known that she had this if she hadn't fallen when trying to catch my dad from falling who has Parkinson's. They did a blood test because her hip swelled to the size of a watermelon, platleete numbers down to 15,000, she had 2 transfusions while in the hospital and they did a bone marrow bioposy.

The doctor didn't say what kind of medicine yet, just told us the particulars..took more blood tests to see what her numbers are and we go back next week for results. We have to give the doctor an answer then if we want to do treatment or not. How bad does this medication affect you, and what can we expect if you know.
I'm so glad I found this forum to help with certain decisions that are coming up and to just know that we are not alone. Thanks again
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Old Thu Aug 6, 2015, 08:14 PM
bailie bailie is offline
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What is the name of "this medication"? Remember different people react differently to medication. What specifically was your Mom's diagnosis?
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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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  #5  
Old Thu Aug 6, 2015, 08:30 PM
Neil Cuadra Neil Cuadra is offline
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Maura,

The medicine that the doctor referred to might be Revlimid (also called lenalidomide), which is often effective for a subtype of MDS in which part of chromosome 5 is found to be missing. Some people experience unpleasant side effects of Revlimid, including, ironically, low blood counts. There are risks of blood clots, liver issues, and more, but doctors may still recommend it when the risks of going untreated outweigh the risks from the drug. Different people tolerate drugs differently, so you can't predict which symptoms will actually be a problem for a given patient.

However, don't assume this is the treatment you've been told about. Find out. Also ask about your mom's MDS "subtype", her blood count numbers, and for an English explanation of the results of any other tests she had.

If your mom's doctor doesn't have experience with MDS, I suggest finding someone with more expertise for a consultation.

The chances for successful drug treatment will be higher if your mom is in great shape for her age and less if she is living with other serious medical conditions (which is common for someone in their 80s).

Once you have more facts, then you'll have a basis for considering the tradeoffs among treatment choices (or no treatment). That includes considering her quality of life.
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Old Thu Aug 6, 2015, 08:42 PM
riccd2001 riccd2001 is offline
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Just a guess, "1 pill a day for 21 days." sounds like 5 or 10mg Revlimid as Neil mentioned. That drug has side effects that vary from patient to patient. For me I had to discontinue when my WBCs tanked. You need to get mom's CBC details and keep track of treatment trends. Good luck!
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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Old Thu Aug 6, 2015, 09:08 PM
riccd2001 riccd2001 is offline
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Not trying to be negative but...

Not trying to be negative but recently reported in 'Oncology' people do need to balance QOL and treatment RISKS .as EOL approaches


http://www.practiceupdate.com/journa...1&lid=10332481
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #8  
Old Thu Aug 6, 2015, 09:31 PM
Maura R Maura R is offline
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Angry

Thanks for the feedback on this. This is so confusing but am learning alot on what I need to ask questions about come next Thursday. Like I said, the doctor was very direct and quick with what to do, with no real help in making the decision. My next question is, should she be seeing an "Oncologist" or is a "Hematologist" ok..who she is seeing now...her top speciality is dealing with AML
Thanks again for all the help.
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  #9  
Old Fri Aug 7, 2015, 09:54 AM
Marlene Marlene is offline
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Also consider getting a second opinion from a doctor who has experience with treating people with MDS. You need to know all the options available.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #10  
Old Fri Aug 7, 2015, 05:39 PM
Maura R Maura R is offline
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riccd2000

Not taking it negative at all...my mom's QOL is our main concern here!!! Will find out on Thursday all the numbers and what treatment plan is, will get back to you then. Thanks for all the support, it is greatly appreciated!!
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  #11  
Old Sun Aug 9, 2015, 12:39 AM
bebop bebop is offline
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ultimately once you find out type of treatment it is up to your mom. My dad decided against anything other than transfusions and made it right at 13 months. Blood and platelets. he was 80 at diagnosis.
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  #12  
Old Sun Aug 9, 2015, 11:13 PM
Maura R Maura R is offline
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bebob

Thanks for your response. Sorry about your dad!! How was his QOL for those 13 months...I know every one handles it differently, but would like to get an idea on what were up against, if you don't mind sharing. Thanks so much!!!

Last edited by Maura R : Sun Aug 9, 2015 at 11:23 PM.
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  #13  
Old Tue Aug 11, 2015, 01:26 PM
bebop bebop is offline
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Maura he did ok for awhile. He was in getting blood and platelets 2 times a week. He got really tired of going so often. I watched him grow weaker it seemed like every week the last few months but his oncologist kept him going until his great granddaughter was born. It was hard on him at that point. I think losing his son/my brother shortly before shortened his life too. He went downhill pretty fast after that. I will be more than happy to share with you. if you want private messages that is ok too. I am sorry you are going thru this with your mom.
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