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MDS Myelodysplastic syndromes

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  #1  
Old Thu Aug 13, 2015, 08:58 PM
Maura R Maura R is offline
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My mom was diagnosed today with MDS

Hello everyone, I recently put up a post about my mom being diagnosed with MDS...well today we got the final diagnosis. She has RAEB II with blasts at 15 to 18%.
She is 81 years old, the doctor gave us our options, and we decided to not do the IV therapy..just going to monitor her blood counts from here and blood transfusions when needed. The doctor felt her numbers were somewhat stable at this point so no transfusion this week. She will receive the Nupigen shot on a weekly basis.
Here are her numbers as of today..
WBC 2.9, LVM 1.2,MID 0.8, GRA 0.8, LYM%42.5, MID% 28.2, GRA% 29.3, RBC 3.51, HGB 11.4, HCT 35.1, MCV 100.1 MCH 32.5, MCHC 32.5, RDW13.4,PLT 36
MPV 8.4
One of the hardest decisions of our lives, but we want mom to have QOL.
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  #2  
Old Fri Aug 14, 2015, 12:28 AM
bebop bebop is offline
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I wish you didn't have to go thru this roller coaster.
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  #3  
Old Fri Aug 14, 2015, 09:00 AM
Maura R Maura R is offline
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bebop

Really wishing we didn't have to go through it also...this is one confusing disease!! Just happy that I found this forum to help out with decision making and to have someone to relate to. Thanks so much!!
Maura
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  #4  
Old Sun Aug 16, 2015, 01:01 AM
bebop bebop is offline
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I know that feeling. I felt so alone until I found this place.
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  #5  
Old Sun Aug 16, 2015, 06:08 PM
MarianneS MarianneS is offline
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to Maura R Mom diagnosed with Raeb 2

2013 husband was 79 y o with same diagnosis as your Mom. Really can't say what the blasts were. He had all three blood lines down to rock bottom. Oncologist started on Dacogen and following month switched to Vidaza. He was also getting blood transfusions. After a few months he was having much better quality of life. Please do not assume if your mom receives medication that it will effect QOL....it may be better. There is always the chance that it will not be successful but if you do not try you will not know.

Wishing you all Good Luck!!!
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  #6  
Old Mon Aug 17, 2015, 01:22 AM
Faye R Faye R is offline
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Smile Well done

Making a decision like that is something that I'm dreading but know at some point in time it will have to be made, I'm sure when the time does come my family will be behind me all the way well done you all.
Off to have my bloods done tomorrow keeping fingers crossed that my counts have gone up and they will up the Vidaza
Dx rcmd-ra
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  #7  
Old Wed Aug 26, 2015, 11:34 PM
Maura R Maura R is offline
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MarianneS

Thanks so much for the concern, we went to the doctor's again and they want to do IV therapy 5 times a week every month and knowing my mom she will not be able to withstand that. We are going on a weekly blood count check and getting transfusions if needed. Her numbers this past week were ok, platelets at 23, so will probably need transfusion next week. Doctor will wait till platelets are down to 15 before transfusion.
We, including the doctor's have explained everything to her and this is what she has chosen...along with our help. Their diaganosis is 4 to 6 months, but we are very hopeful that we will get much longer.
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  #8  
Old Thu Aug 27, 2015, 05:55 AM
DanL DanL is offline
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It is really difficult to predict how a patient is going to respond to treatment in terms of quality of life. I have met several people in the past 5 years who have done very well with Vidaza and Dacogen and what seems to be a smaller group of people who have seen a reduction in quality of life that is tied to the treatment. The quality of life differential is usually tied more to progression of the disease as opposed to taking treatment (this is my completely unqualified opinion based on observation and conversation) I have had 10 cycles of Vidaza and really only experienced about 3 days per month where I was a little run down - oddly enough it was during the 3rd week of each treatment cycle. The other consideration is that typically if you are going to get a response from Vidaza or Dacogen, it usually happens within the first 60 days for Dacogen, but can take up to 6 or 9 months to get a best response from Vidaza, meaning that it might be better to get ahead of the disease with treatment.

to sum up - quality of life with the couple of drugs that are most commonly used is not usually affected too much for most patients - that is, unless getting to and from clinic is bad. The drugs used are pretty well targeted and are not systemic, so the impact is generally manageable. Lastly, listen to the doctors, ask questions, and see if you can talk to people who are currently receiving treatment so that you can get a real life narrative.

Best of luck!
Dan
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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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  #9  
Old Thu Aug 27, 2015, 11:58 AM
Maura R Maura R is offline
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DanL

Thanks so much for the reply. When my mom was first diagnosed, they were going to do the medicine which we were on board with, but when we went back to give the final decision as to what treatment we should do, the doctor said that her progression of the disease wouldn't respond to the medicine, so that is when she said they would do the IV therapy for 5 days, every month.
Can the Vidaza and the Dacogen be given in IV therapy or is it in only pill form. The doctor was very concerned about her numbers dropping so low, as they are low now, which is why we decided to just monitor at this point.
Will keep everyone posted on how she does on Monday.
Thanks again,
Maura
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  #10  
Old Thu Aug 27, 2015, 12:59 PM
MarianneS MarianneS is offline
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medicine

Vidaza (IV) takes about 35 minutes give or take. Husband was given Aloxi the first day in the IV which should assure no gastro upsets (but can cause constipation) After the infusion he had very little to no after effects.

Do not know anything about Vidaza in pill form.

Wishing your Mom good luck.
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  #11  
Old Thu Aug 27, 2015, 02:27 PM
DanL DanL is offline
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Maura,

Vidaza is typically done via infusion over about 30 minutes or as injections based on doctor or patient preference. It is generally a good idea to take any anti-nausea medications offered as preventative treatment. I never had any issues with nausea or constipation while on Vidaza. Dacogen I think is done as in-patient infusions and done over a 24 hour period for 3 days - but I am not sure.
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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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  #12  
Old Thu Aug 27, 2015, 05:10 PM
riccd2001 riccd2001 is offline
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Celgene's Current Quazar Clinical Trial of Vidaza pill form...

There is a clinical trial in progress called CC-486 (Oral Azacitidine).

"QUAZAR Study for Lower-Risk MDS Patients A clinical research trial sponsored by Celgene Corporation. This is a study for people with MDS who need blood transfusions due to low red blood cell counts (called anemia) and low platelet counts (called thrombocytopenia)."

It's meant for patients with low-risk MDS; however, it may prove helpful also for those with higher blasts.

https://www.celgeneclinicaltrials.com/quazar-mds
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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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  #13  
Old Thu Aug 27, 2015, 06:18 PM
Maura R Maura R is offline
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Riccd2001,

Mom was diagnosed as a "High Risk MDS patient...so not sure if she would be able to do the trial, but will question the doctor on Monday. Thanks for the input
Maura
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  #14  
Old Fri Sep 4, 2015, 10:54 AM
Maura R Maura R is offline
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Mom diagnosed with MDS

Well mom had her first platelet transfusion this past Tuesday. Levels were down to 12, so hoping that it will bring her levels up enough. Looking like her other numbers are dropping slowly also, probably will need shots next week.
Have to say the hardest thing through all of this, is trying to answer her questions. How does anyone grasp the fact that they only have 6 months to a year to live
Prayers are sent to everyone out there that has to deal with this awful disease...I am so thankful that I found this forum to talk and share with you all!!!





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Mom DX with MDS RAEB 2 with blasts @15 to 18%...just monitoring blood work and transfusions when needed
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  #15  
Old Mon Sep 21, 2015, 11:13 AM
alyasa alyasa is offline
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Keep strong Maura C

Maura C

I hope and pray that goes well for you and your mom. Please stay positive for her sake, and be patient.

There is a lot of good advice on this forum so please spend some time here so that you can make it comfortable.

And please do not neglect yourself either! You have to take care too!

Peace and may the Almighty help your mom and her family.
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Alyasa, father aged 72, dx July 2014 RAEB-2, (10.5% blasts) on Vidaza, low WBC (<1)
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  #16  
Old Thu Sep 24, 2015, 10:54 PM
Maura R Maura R is offline
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Alyasa,

Thank you so much for your post!!! It has been extremely hard, but we are getting through. We just had an appointment this past week and the platelet transfusions aren't working as wel as they should. The doctor seems to think she's starting to transition into leukemia, but we're staying positive and taking one week at a time for now.
I really appreciate all the support that I get from this forum. Thanks again and God Bless!
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