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Old Sun Jul 29, 2012, 01:28 AM
maria&lola maria&lola is offline
Join Date: Jul 2012
Posts: 34
Mom started Dacogen

Greetings, all.

After a very adverse reaction to Revlimid, my mom started her first course of Dacogen last week and follow up is Monday. She has the added complication of kidney failure and does home-based PD dialysis. Everything is a constant chemistry experiment.

Trying to stay positive but realizing the stress is catching up with me. Figured it might help to at least get it out a little by joining this community.

All the best, Maria
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Old Sun Jul 29, 2012, 04:23 AM
Birgitta-A Birgitta-A is offline
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918

Hi Maria,
Hope your mother will have a positive response to Dacogen without adverse effects! Perhaps she is getting reduced dose due to the suppression of the bone marrow in connection with Revlimid? How are her counts?
Kind regards
73 yo, dx MDS Interm-1 2006, tx dependent from dx, supportive therapy with txs, Neupogen for low white blood cells and drugs for iron overload. Started Thalidomide + Prednisone 2010 with positive results.
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Old Sun Jul 29, 2012, 10:19 AM
maria&lola maria&lola is offline
Join Date: Jul 2012
Posts: 34
Thank you, we hope so! Actually, they said the Dacogen is cleared by the liver so her dose wasn't adjusted as far as I know. We're just trying to keep a sharp lookout for any new signs or symptoms that could indicate a reaction.

Her RBC counts were strong at the onset because she had just had a transfusion the Friday before starting treatment. We'll see where they are at on Monday. She also goes twice a month to see her nephrologist and has labs drawn then, so we are keeping pretty good tabs on it.

Unfortunately, there doesn't seem to be a lot of information/studies on MDS with end-stage kidney patients.
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Old Sun Jul 29, 2012, 11:47 AM
PattiDean PattiDean is offline
Join Date: Jul 2012
Location: Clearwater, FL
Posts: 171

My husband is 75 and was just dx with MDS- RAEB-t last month. He only has one kidney, and is in the beginning stages of kidney failure, but luckily he hasn't had any problems yet.

Three weeks ago my husband had his first treatment with Dacogen, he did very good during the treatment, but a few days after his last treatment of the five day cycle all his counts dropped and he had to go in the hospital. He is home now, is numbers are still somewhat low, but they are not dropping anymore.

I can certainly understand how overwhelmed it has to be for you, since you are working full time and raising a family. My husband and I are retired, we don't have any close family, it is just the two of us, and this last month has been so very difficult at times.

You have come to the right place. The people on these boards are so supportive, caring and helpful, they will give you the strength when you think you have no more.

Your mother is so very lucky to have you there for her. I will keep you and your mother in our thoughts and prayers. Lots of hugs are being sent your way.

Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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Old Sun Jul 29, 2012, 10:15 PM
Al's Wife Al's Wife is offline
Join Date: Jun 2010
Location: Jackson, Georgia USA
Posts: 205
Welcome, Maria. As Patti said, your Mom is lucky to have you there. I hope she tolerates the Dacogen well. This is a great forum to gain information and support. You will both be in our prayers as well. Keep us posted.
Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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Old Wed Aug 8, 2012, 11:49 PM
maria&lola maria&lola is offline
Join Date: Jul 2012
Posts: 34
Thanks, ladies. So far, so good. She doesn't seem to be having any reactions or symptoms like her levels are dropping (shortness of breath, dizziness, buzzing sound, etc.) We go for a blood draw with the nephrologist tomorrow and return for her second cycle of Dacogen on the 20th.

I hadn't checked back in this forum sooner due to a busy week. My son just turned 3 so I was in the throes of birthday party planning.

I will keep you all in my prayers as well!
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