Vidaza & Thalidomide Combination Therapy

[larry gard]

In Dec 2005 I was diagnosed with low risk MDS with less than 5% blasts. In June 2006 it was found that my disease had progressed more rapidly that anticipated as it now was high risk MDS transforming to AML with 23% blasts. My disease is being approached as high risk MDS rather than a frank AML with recommended combination therapy of Vidaza and Thalidomide - 28 day cycle with 5 days of low dose Vidaza injections (75mg/kg) and Thalidomide tablets starting at 50mg/day increasing to 100mg. The Vidaza injections are given in my arms.

On July 17, 2006 I started the treatments and the 6th cycle of treatments was started on Dec 4, 2006 with counts as follows: WBC 1.1 RBC 2.93
Hgb 9.6 Plt 138 ANC 0.4

At this juncture I remain optimistic with this treatment plan and overall MDS considerations. Detailed background and periodic counts are included in the "My Story" section.

Information furnished by others in Marrowforums and its predecessor, AA-MDS-TALK List, have been appreciated and most helpful in becoming better acquainted with MDS, various treatments and side effects since March 2006 when I first enrolled in AA-MDS-Talk.

Any comments about Vidaza and Thalidomide will be appreciated.

larry gard, male, age 77.

[knstone]

Larry,
How are you doing on the Vidaza and Thalidomide combination?

I took Thalidomide for 32 months and can give some tips if you are still on the combination.

I hope you are doing better.

Regards, Kirby in Cincinnati

[larry gard]

Originally Posted by knstone

Larry,
How are you doing on the Vidaza and Thalidomide combination?

I took Thalidomide for 32 months and can give some tips if you are still on the combination.

I hope you are doing better.

Regards, Kirby in Cincinnati

3/6/07
Kirby:

Good to receive your informative email! On 3/5/07 I started my 9th 28day cycle of Vidaza and Thalidomide with counts as follows on 3/5: WBC 1.0 RBC 3.05 Hgb 10.9 Hct 34.6 Plt 204 ANC 0.2 About a month ago when I had a BMB the blasts were down to about 2 percent. I would like to receive some tips from you about your experience with Thalidomide. Since we are in Cincinnati, perhaps we could meet for coffee some morning. If so, I can be contacted at 871-2913 or email at llgard@aol.com.

Thanks again for the email - larry gard

[larry gard]

As indicated on 12/4/06, I started "Vidaza & Thalidomide Combination Therapy" on 7/17/06 to treat high risk MDS bordering on AML. After 9 months the Vidaza was discontinued in March 2007 with the Thalidomide continuing on a daily basis. I last saw my doctor on 6/11/07 and we are watching to see how the counts progress - hopefully! The following counts show the progress to date:
6/11/07 WBC 2.2 RBC 3.62 Hgb 13.7 Hct 39.0 Plt 160 ANC 1.3
4/23/07 WBC 1.2 RBC 3.06 Hgb 11.4 Hct 34.0 Plt 165 ANC 0.3
7/17/06 WBC .9 RBC 3.16 Hgb 10.6 Hct 33.3 Plt 117 ANC-too low to register
My background is presented under the "Tell Your Story" section. Good luck to all with MDS!

larry gard

[larry gard]

6/17/08 update of my MDS history since my last posting of 12/4/06.

A BMB on 12/27/06 revealed that blasts were down to 2 percent from 23 percent on 6/19/06. A BMB on 1/2/08 indicated that blasts remained at 2 percent. Vidaza and Thalidomide Combination Therapy continued from 7/17/06 until 4/2/07 when the Vidaza was discontinued. The Thalidomide was discontinued on 1/21/08 with Vidaza restarted on 3/17/08. Aranesp shots have been received monthly since 4/28/08.

Counts continue to fluctuate with results as follows from the start of treatment to date:

7/17/06 WBC .9 RBC 3.16 Hgb 10.6 Hct 33.3 Plt 117 ANC (too low to register)

6/9/08 WBC .6 RBC 2.28 Hgb 9.5 Hct 28.1 Plt 242 ANC (too low to register)

My Hematologist, Dr. Slobodan M. Stanisic, continues to periodically confer with Dr. Raza, at my request, as mentioned in "Larry Gard's Background" included in the "Tell Your Story" section of Marrowforums.

For those new to Marrowforums, my favorite websites are:

www.aamds.org (an excellent source for booklets describing MDS and related matters)

www.mds-foundation.org (website includes a list of MDS Centers of Excellence)

www.mdstreatment.org (Dr. Raza's website at St. Vincent's Comprehensive Cancer Center (SVCCC), New York City. Dr. Raza moved from UMass Medical Center to SVCCC on 8/30/07. SVCCC is listed as a MDS Center of Excellence)

I remain optimistic and am thankful for the excellent care I am receiving along with the medications that are available for this insidious, interesting and mysterious disease!

Any insight you may have will be appreciated.

Larry Gard, male, age 78, Cincinnati, OH

[Steve Kessler]

Hi Larry,

After 2 years of Vidaza plus Enbrel (clinical trial) which just kept my excess blasts steady at around 10-12%, I went back to my primary doc who wanted to add Revlimid to Vidaza. I had started Revlimid about 5 years ago and it dropped my counts sharply. I started at 10 mg daily, then cut to 5 mg daily before going off. Nonetheless he wanted to try again, at lower dosage. Since August of 2008, I've been on Vidaza (thru a port) and Revlimid 2 5mg pills per wk or about 8 per month. My excess blasts have steadily declined from about 10% to 6% and now under 4%. Mycounts have remained steady at about 2.5 WBC's, 1000 ANC, 100K platelets. A disappointment is that Revlimid is supposed to reduce the need for RBC's and it hasn't. I've been about every 4 weeks for the last 4 years. HCT goes between 32 and 24, sometimes lower.

I voted not to take thalidomide originally because of all the comments about neuropathy. As you know, Revlimid is the "advanced" version of thalidomide. Hope this helps.