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MDS Myelodysplastic syndromes

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  #1  
Old Sat Oct 11, 2008, 11:31 AM
knstone knstone is offline
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Platelets low - waiting to try Vidaza

Hi to all my MDS colleagues,
After 4.5 years of great responses, first to thalidomide, then on Revlimid; my platelets have taken a sharp decline. The platelets were 67 on 9/3 and now are in low 20's. The drop has been very steep, the other counts are fairly good, Hgb=11.3, WBC responds well to Neupogen. A BMB shows only 6% blasts and no chromosome abnormalities.

Revlimid has been stopped as it often causes low platelets. My doctor consulted Moffett Cancer Center and was told that it can take 3 weeks off Revlimid for the platelets to respond. I've been off Revl for 12 days.

I'm getting CBC's every other day and finally had the same platelet count on 10/10/08, actually +1, HA. It's obviously within the error band of CBC counting but I'll take it anyway!!

My doctor will start me on Vidaza as soon as some stability in the platelets is achieved. There have been some good responses to Vidaza and I have responded to all the medications tried thus far so I'm confident we can get by this situation.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #2  
Old Sun Oct 12, 2008, 10:03 PM
Neil Cuadra Neil Cuadra is offline
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I'm sorry to hear this, Kirby. I hope your platelets will pick up and let you resume the Revlimid.

Having 6% blasts isn't as good as last year, when you dipped below 2%, but it's still a lot better than the 16% you once had.

"No chromosome abnormalities" - isn't that music to your ears?

There are still a lot of unknowns, but you're in very good hands. That and your knowledge about your treatment give me confidence that things will go in the right direction.
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  #3  
Old Mon Oct 13, 2008, 02:50 AM
Steve Kessler Steve Kessler is offline
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Have you heard about AMG531?

Kirby, htere is a study currently recruiting participants which uses Dacogen (like Vidaza) and a platelet boosting drug called AMG 531 at the Seattle Cancer Care Alliance. Dr Pam Becker or Dr Baart Scott are the contacts. AMG 531 has just been approved by the FDA for treatment of thrombocytopenic purpora and it is unlike platelet transfusions in that the body doesn't develop resistance to it in the same way as transfusions. Look into it.
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Steve Kessler,Age 71, Dx 3/2001, Currently AML converted from MDS, 5q-, 11q23, Negative response to Aranesp, Revlimid. Partial response to Vidaza in the past. On a study using ON1910.NA, counts too low to go to Stanford on schedule.
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  #4  
Old Mon Oct 13, 2008, 06:49 AM
Birgitta-A Birgitta-A is offline
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AMG 531/Romiplostim/Nplate

Hi Steve,

You know AMG 531/Romiplostim/Nplate is not OK for MDS patients - many patients in trials have had increased symptoms .

"Hematological Malignancies and Progression of Malignancy in Patients with a Pre-existing Hematological Malignancy or Myelodysplastic Syndrome (MDS)

-- Nplate stimulation of the TPO receptor on the surface of hematopoietic cells may increase the risk for hematologic malignancies. In controlled clinical studies among patients with chronic ITP, the incidence of hematologic malignancy was low and similar between Nplate and placebo.

-- In a separate single-arm clinical study of 44 patients with myelodysplastic syndromes (MDS), 11 patients were reported as having possible disease progression, among whom 4 patients had confirmation of acute myelogenous leukemia (AML) during follow-up.

-- Nplate is not indicated for the treatment of thrombocytopenia due to MDS or any cause of thrombocytopenia other than chronic ITP."

http://www.reuters.com/article/press...008+BW20080822

Perhaps the next drug for low platelets Eltrombopag/Promacta/Revolade will have a positive effect .

Kind regards
Birgitta-A
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  #5  
Old Tue Oct 14, 2008, 08:31 PM
Steve Kessler Steve Kessler is offline
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Thanks for the update, Birgitta

Too bad about the problems amg531 seems to be causing. Thanks for the update.
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Steve Kessler,Age 71, Dx 3/2001, Currently AML converted from MDS, 5q-, 11q23, Negative response to Aranesp, Revlimid. Partial response to Vidaza in the past. On a study using ON1910.NA, counts too low to go to Stanford on schedule.
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  #6  
Old Thu Oct 16, 2008, 08:42 AM
knstone knstone is offline
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Thanks to all for your comments

My platelet levels continue to be somewhat unstable: up to 30 on 10/13, down to 23 on 10/15, WBC is also up and down but Neupogen continues to boost the WBC.

The bone marrow cellularity was 10-20% on 10/1 and this low value has the doctors concerned with starting Vidaza at the moment. The feeling of 3 different doctors, one from Moffett, one from Ariz Cancer Center, and my own doctor agree on this point. There is general agreement that the Revlimid has impacted the bone marrow adversely in the platelet and WBC production. I'm well beyond the median response of non -5q patients on Revlimid.
My platelets started to drop after 14 months and while trying to readjust the Revlimid levels the drop became severe at 18 months.

We will continue to watch the counts and my have another BMB within a week or so to look at cellularity and the blast%.

Steve, how low have your platelets dropped during your Vidaza trials?

We continue optimistic that Vidaza will help stabilize the MDS.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #7  
Old Thu Oct 23, 2008, 12:52 PM
knstone knstone is offline
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Questions on Neumega and AMG531

Dear Brigitta and others,
Concerning Neumega an article from 2001 seems to indicate Neumega worked with some MDS patients:
http://www.ufscc.ufl.edu/Patient/can...rnews&id=18256

Another article from 2007 indicated that AMG531 also helped some MDS patients, I think it was done at MD Anderson.
http://professional.cancerconsultant....aspx?id=41054

I hope these links work.

Did your information come from later articles?

Thanks for any info you can supply.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #8  
Old Tue Nov 11, 2008, 10:11 AM
knstone knstone is offline
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Platelets responding to Neumega - moving on to Vidaza

MDS colleagues,
My platelets have responded to a drug rarely used for MDS patients, Neumega.
This was recommended as an option by MDS experts at the Univ of AZ.
This link describes the low dose usage of Neumega for MDS patients:
http://jco.ascopubs.org/cgi/content/abstract/19/21/4165

The article describes use of Neumaga at 10 micrograms/kg of body wt.
In my case at 90 kg the drug is given at 0.9 mg. This dosage is 1/5 the normal use of Nuemega for chemo patients.

My platelets rose from the low 20's to the 40's within 10 days on the low dose Neumega. Side effects are mild edema in ankles and fingers, taking Lasix to control this.

We hope to start Vidaza this week.

I'll start a new entry on Marrowforums when we start the Vidaza.
__________________
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #9  
Old Tue Nov 11, 2008, 12:18 PM
Eileen Eileen is offline
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platelets low waiting for vidaza

Hi Kirby,
I`m so happy that your platelets have finally come up.
Good luck with vidaza,i know you`ll do well,
I`m pulling for you,
Eileen
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Eileen.72,dxMDS 2007.currently on vidaza,procrit & neuprogen.
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  #10  
Old Tue Nov 11, 2008, 01:31 PM
Birgitta-A Birgitta-A is offline
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Neumega and Romiplostim (AMG 531)

Hi Kirby,
Congratulation to the good result with Neumega !

They have an abstract about Romiplostim (AMG 531) at ASH 2008 but I still think that drug isnīt OK for MDS patients because I have read at least ten abstracts or articles about increased blasts in MDS patients.
http://ash.confex.com/ash/2008/webpr...Paper8839.html
Kind regards
Birgitta-A
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  #11  
Old Thu Nov 20, 2008, 09:54 AM
knstone knstone is offline
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Started Vidaza - counts holding

I started Vidaza at a reduced dosage on 11/12/08. A 3 day cycle at 100mg/day was used, resulting in 40% dose (from normal 75mg/m2).

Neumega was used at low dosage, 10micrograms/kg based on the 2001 article prevously posted. Platelet count doubled within 10 days on Neumega with counts rising from low 20's to 40's. Side effects were minimal.

The increased platelet count allowed Vidaza to be started at the reduced dosage.

I'll start a new post regarding Vidaza results, initial counts 7 days after starting Vidaza are very encouraging.
__________________
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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