[Russ P.]

Bec, Thanks.
I too pray for the whole forum.
Blessings,
Russ

[Russ P.]

Bec,
Glad to hear your Dad is doing well.
Let us know the type and dosage of the steroid he’s on. I always seemed to be helped a bit with prednisone but hesitated to stay on it.
Russ

[Russ P.]

Linda, See the recent posts under “platelets” or the ones under “dacogen at home”. My platelets have not been as low as your mothers – has she reached passed the nadir after dacogen? Juice from fresh pineapple might raise her PLTs if it isn’t too irritating to her mouth. Does she have any gingivitis? A prescription mouthwash like Peridex might help or using a toothpaste like Colgate Total. For your info, I go to an excellent Hematologist in South Bend, Dr. Taber.
A prayer for your mom.
Russ

[Russ P.]

LuAnn,
I questioned Dr. Issa at MD Anderson about the difference between the 5 day dosage routine that I am on and the dosage on the Dacogen web page. He indicated that my hematologist is following their protocol (MD Anderson) which they think is better than the FDA approved dose on the web page.

Just finished my 1st 5 day round last Friday with this experience: The 1st 3 days I felt really peppy due to the steroid I had as a premed.
By Friday I experienced stomach problems with excess gas that continued into Saturday and Sunday. Saw my Doc on Monday and he thought the steroid had irritated my stomach. My CBC on Monday showed my WBC dropped from 43 to 11, my HGB was down to 9.2 from 9.8 and PLT was up from 33 to 50. (Values are just before and after dacogen, the nadir is expected to be next Monday or 2 weeks from starting dacogen.) Have been easily tired so far this week and need a bit of time to recover the dacogen effects.
Hope this helps,
Russ

[Russ P.]

There was an interesting part of the PBS Nova
program this week, “Ghost in Your Genes”. Go to wwww.pbs.org and in this Nova episode see the article by Dr. Issa on Epigenetic Therapy. He is claiming remission on 50% of the 100 patients in his trial. (Dr. Issa is at MD Anderson in Houston.)
I did fine on my 1st 4 days of dacogen this week
will finish it tomorrow. My only side effect is constipation which I handle with diet and stool softener. I had a premed of antinausea medicine and a steroid. The steroid gave me a nice boost of energy. My WBC was high from my AML and the dacogen should lower it. My concern is I started with low platelets (30) and a drop here would be bad.
Russ

[Russ P.]

Dear Estee, My prayer is that you will find comfort in memories and God’s love and grace.
I’m so sorry that you have to being going through it all.
Russ

[Russ P.]

Susan,
May you find comfort in your memories and may God sustain you in your grief.
Blessings,
Russ

[Russ P.]

Prayers for Maureen and kls. May you find comfort in your memories and may God sustain you in your grief.
Blessings,
Russ

[Russ P.]

Estee,
There is no way that I have heard to predict how one will do on Dacogen or for that matter any of the standard AML treatments. I will be going on Dacogen again even though I was on it when the AML was 1st diagnosed. My faith helps more than anything which includes the prayer of many plus God’s Grace. Prayers for you and your husband.
Russ

[Russ P.]

Linda, I doubt the hemo/oncs could predict how your mom will respond as each case is different.
I was on Dacogen when my BM blasts went up to 30% and the dx was AML. My doc is going to try me on Dacogen again after my clinical trial of Vidaza + PXD-101 showed increased absolute blasts and increased WBCs. The trial was over 9 months and I felt it had slowed the AML progression. I don’t expect a cure, except for a miracle, but am hoping for a good quality of life in the days that the Good Lord provides me.
Blessings,
Russ

[Russ P.]

Shari,
I said a prayer for you and your dad. The power of prayer and knowing others are praying can give much comfort. It binds us together.
Russ

[Russ P.]

Linda,
I was told in January of this year that I had AML and there was nothing more the hemo/onc could do for me. I went to the Univ. of Chicago and after examination of my history they started me on a clinical trial of vidaza+PXD-101. I seem to be fairly stable and don’t feel too bad except for being easily fatigued.
Your mom is young and I pray that they can get her strength built up so some treatment might be helpful.
Prayer is powerful and I have many praying for me and so I extend my prayers for your mom, Caroline’s dad and all those who have this terrible disease.
Russ

[Russ P.]

Dear Katiebear,
Prayers and positive hopes for your father.
Russ

[Russ P.]

Dear Sandi,
Thoughts and prayers that our loving God will sustain and comfort you during this time. Trust in Him.
Blessings,
Russ

[Russ P.]

Prayers for you and your grandmother.

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