[Russ P.]

I was on Vidaza for 10 rounds and one time went over 4 months without a transfusion. Apparently
it stopped working as my BM blasts went up to 18%. Went on Dacogen and blasts still increased up to 35%. Now that I have AML am on a clinical trial using Vidaza plus PXD-101 (a HDAC). Too early to tell results as had only a one week treatment.

[Russ P.]

Thanks for the link, Wendy. I have only heard part of it but thought it interesting.

[Russ P.]

Sandhya, How are his platelets? He could bruise very easily if they are low.

[Russ P.]

Zoe, If you go to the UMass web site you will find that Dr. Raza has run trials with Co Q10. Also trials are indicated for curcumin. I have taken Co Q10 (200mg/day) mainly for help with the liver when on the statin drugs for high cholesterol. Have continued since some of the chemo is also hard on the liver. Took curcumin along with gingerol for awhile but had a hematoma in my knee which I relate to these spices. The labels caution about stopping them before any surgery because of bleeding so this caution should apply when low platelets are involved.

[Russ P.]

To Patti, Alekandra and all the caregivers: My heart and prayers go out to you all. Like your MIL, Patti, my salvation is assured through my faith in Jesus Christ. I am looking forward to bowing before Him and seeing my mom and dad and all those who have gone before. Blessings to all.

[Russ P.]

KWJ, Hope the Zarnestra works for your dad. I’ll say a prayer to that effect. Just a comment that when I pray for the ones going through this ordeal, I include the caregivers.
You need all the help you can get.

[Russ P.]

Kathy, thanks for your thoughts and prayers. Hope your dad will be over the infection soon.
It’s great his blasts are down and hope they don’t go up. Pigduck, hope all goes well for your dad on the induction chemo. His age should favor him but it will be rough. I’ll be praying
for both of you. God Bless

[Russ P.]

Patti, I was encouraged by your MIL’s beating the odds and hope it was a good QOL for her.
Since I was just dxd with AML – 35% blasts in the BMB, I was facing only a couple of months of life. Am too old for the standard AML induction chemo so opted for a clinical trial of Vidaza and PXD-101 that might give me a few more months of decent QOL. Prayers for your MIL and Aleksandra’s mom.

[Russ P.]

Dear Eve, My sincere condolences. I know it’s been a long fight and how hard it is on the caregivers. May our Lord give you some comfort and peace in your sadness. Being recently dxd with AML and too old for intense chemo, I may be following your dad soon.

[Russ P.]

Thanks to all for your comments. Unfortunately my selected option is a phase 1, and no remission is expected. The hope is for extended time and QOL. So many people going through rough times on this forum – I pray for you all.
PTL there is a better life after this one.

[Russ P.]

Thanks for the info, Janice. My hemo/onc just called and he indicated the high intensity treatment would be a “fools errand” for me. He recommended that I go with the Vidaza + PXD-101
trial as it could buy me some more time.

[Russ P.]

Thanks all for your comments. They could not give me any positive info about the trials except that #3 was recommended as the best for me. #1 involves a mono-clonal antibody against CD-33 (myeloid marker) but has some possible bad side effects. #2 involves a month hospital stay and my hemo/onc didn’t think I could take it because of my age. Pigduck, your dad is comparitively young and should handle the chemo OK. I’ll pray that it works for him.

[Russ P.]

Sandy, Found the study from Loyola – 76% remission sounds great. It was in proceedings from at the 2006 meeting of the American Society of Hematology. Blood. 2006;108:561a. Currently I could not find any further trials on this at Loyola or elsewhere. Makes one wonder why not?

[Russ P.]

Neil, Hang in there. This forum needs your expertise.

[Russ P.]

Hi, tried to post before but got messed up on my log in or password. So I’m back after having to re-register. I have experienced night sweats a couple of times with MDS. The 1st was when I had a bout with pneumonia and the 2nd was with some bronchitis that I was on anti-biotics for. Got over both and the sweats stopped.

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