decitabine

[Bec]

Hey all,

I have been keeping up with you all. We have been so busy with second son in senior year and football playoffs. My Dad spent last week in hospital with fluid in lungs but he told Dr’s (all 6 of them) that he had to be out for football game on Friday. He made it and is doing well today.

Dr. mentioned decitabine. Can’t find much but medical “jibberish” on subject. I looked on past posts but no one has made any mention of getting on trial. The procrit and prayers have spread Dad’s tx out to every two to three weeks and sometimes longer. His ferritin level has even dropped.

Thanks for any info you can offer.

Take care all and Terri– Dad is still juicing pineapples. One little step at a time. HA

Bec

[Neil]

Hi Bec,
Use the following link for info on decitibine.

http://www.google.com/search?hl=en&q=decitibine&btnG=Google+Search

It has been used in Europe for a few years. Seems to function best with RAEB patients. Similar to Vidaza (azacytidine).
Like most MDS pts it works with some, not with others. Most find it will drive counts down before they increase. Am aware of one patient who became TX free for about a year while on it. After it “wore off” she was put on Vidaza.

[Suzanne]

My notes too say it is a “close relative ” of Vidaza and 5-azacytidine

[Bec]

Hey Neil and Suzanne,

Thank you for responding. Dad is willing to try if side effects are not too great. Besides tx’s, he is living life “grand”. He does not even mind the weekly procrit shots now.

Neil, this month is his five year mark. I remember writing you so upset that he had beEn given five years to live. You gave us your “pep” talk about “life expectancies”. We are so blessed to have people like you to “uplift” patients and families when the DR’s can be so negative. Thank you again from our family. Positive attitude helps so much in some cases.

Dad is still laying brick on my sisters “out of Africa house.” He attends almost all of the football, volleyball, and soccer games of his 8 grandchildren that are playing. He is doing well but one thing we know now with this disease is that we treasure every day with Dad. It has also opened my eyes with other loved ones.

I try to remember to tell all that I love them quite often.

Thank you again Neil. The people on this site LOVE AND APPRECIATE you.

Bec

[Caroline]

Bec,

I am thrilled to know that your Dad has made his 5 year mark and is living life to its fullest. My Dad has had MDS for 3 years. It transitioned into CMML a couple of months ago. He has many more bad days than good days at this point but they are still only beginning to treat him. Procrit seems to be helping him but now his kidneys are causing trouble. He presently has 5 specialists working with him to get his kidneys into shape so that he can withstand a small operation to get rid of kidney stones. I just drove by his house a few minutes ago and there he was…washing and vaccuuming out his car. I admire him. As tired and worn out as he is, he still keeps chugging along. Like your Dad, my Dad is going to fight like a trooper and enjoy his family at the same time. If there is one thing that I have learned through this whole ordeal, it is to slow down and take one day at a time. I used to be a person who dreamt alot and lived for tomorrow. No More !!! I thank God for everyday that we all have together and I try to not plan any further than I have to. I feel much more relaxed and I am more effective to my loved ones now.

Take care,
Caroline

[Jerry]

Caroline,

I am really out of my league here, but has your Dad explored the option of having his kidney stones zapped by ultrasound? I have not had it done, but I have heard of it and it is not invasive at all. Just a thought.

Jerry

[sdrake]

Caroline,

I admire your attitude. I feel like I am in a constant state of worry about my dad’s CMML. My dad, like your’s, is a real trooper and is not letting this disease get him down. He is active and doing well. I want so much to be a help to both my parents as well as my own family. How do you do it?

[Author]

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