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Clinical Trials Considering or participating in research studies

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Old Thu Dec 20, 2012, 12:53 PM
dpmeeks dpmeeks is offline
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Non-myleboblative

Im going for stem cell transplant on Jan 2nd and I entered myself into a clinical trial at UK in Lexington ky. that there researching the results of Myleoblative and non-Myleoblative treatment before transplant.

Ive had a very tough time deciding if im going to stay in the trial, I was "randomly" chosen for the non-Myleoblative ( low intensity ) but ive heard that the low intensity has a higher relapse rate. Ive had it explained that both standard treatment ( high dose ) and low dose have the same success rate (70%) and failure rate (30%) but, the failure rate on low dose is higher in the relapse area.

Does anyone have info or experience with these procedures or clinical trials and results ? I have to decide soon if im gonna stay in the trial or not soon .. thanks.
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Phil 46yrs old, AML 8-20-12, full remission 9-13-12 going for BMT 12-31-12. Transplant performed on 1-8-2013
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Old Fri Dec 21, 2012, 12:32 AM
evansmom evansmom is offline
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Hi Phil,

This is just my opinion and I do understand how important clinical trials are (although up here in Canada, they're not as commonly offered as an option).

If you had a non-malignant form of bone marrow disease, like my son had (AA), I might say a non-myeloablative prep is a fair option but given your leukemia, and a tougher one at that being AML, I personally would want to have it hit hard with full myeloablation to reduce the liklehood of relapse as much as possible.

Best wishes, which ever route you choose.
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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Old Sun Dec 23, 2012, 06:33 PM
dpmeeks dpmeeks is offline
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thank you for the reply, I decided to put it in gods hands and let the chips fall as they may and I was chosen for the lower dose treatment. I pray it doesn't come back..
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Phil 46yrs old, AML 8-20-12, full remission 9-13-12 going for BMT 12-31-12. Transplant performed on 1-8-2013
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Old Sun Dec 23, 2012, 11:21 PM
Lori Patrick Lori Patrick is offline
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Prayers kept me going and I am sure they will you as well. Peace to you.
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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Old Mon Jan 7, 2013, 09:43 PM
dpmeeks dpmeeks is offline
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thank you lori
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Phil 46yrs old, AML 8-20-12, full remission 9-13-12 going for BMT 12-31-12. Transplant performed on 1-8-2013
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Old Tue Jan 8, 2013, 07:01 PM
Mary4Mike Mary4Mike is offline
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Phil,
My husband had the low intensity pre-chemo for his transplant. They really didn't give us an option. They evaluated his case and this was the plan they offered. It has been 3 years and he is doing great. We went to another transplant center where they evaluated his case and wanted to do full body radiation and full ablative induction. We opted for the low intensity after reading what could possibly be down the road with having radiation. This was what we thought was right for us, not to in anyway say it would be wrong for someone else. I have to admit that his hospital stay was a breeze. He had other regimens for MDS that were harsher and landed him in the hospital 3 times.
We put this in the hands of the Lord and never looked back. We trusted Him and He gave us the peace to make this journey. If you included Him in your decision, you are doing the right thing. All the best to you and remember that the best is yet to come!

Mary
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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Old Tue Jan 8, 2013, 07:11 PM
Mary4Mike Mary4Mike is offline
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I just noticed that this thread was titled Clinical Trials. Mike was part of a clinical trial. He was asked to take Vorinostat for 100 days. He took it prior to transplant for 30 days, I believe, and the remaining days post transplant. It was a study to see if this drug has an effect on GVHD. I really doubt if we will ever know the outcome unless this drug becomes part of the transplant protocol. Mike has had very little GVHD (mild) so perhaps it helped....especially when I read how severe some patients have it.

Mary
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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