Tamoxifen clinical trials
Does anyone knows if tamoxifen is recruiting now as I read before that the estimated enrollment date will be on September 2017,and does anyone tried tamoxifen a few or long time ago can share his experience
Thanks in advance
Replies to This Discussion
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Permalink Reply by Bruce Ward on
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I believe that trial will be carried out in Switzerland, I have not seen any mention of US sites.
Have you asked your son's doctor about an off label prescription?
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Permalink Reply by Shady on
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the doctor didn't confirm using as it is still preclinical phase,so
I have took the risk of trying 4 months ago , my son is 7 years old now and thanks God he is still ambulant ,minor improvement since taking tamoxifen and he is stable now,his cpk was measured after 2 months from tamoxifen and reduced from 14,000 to 4000, hope that tamoxifen was the cause of such reduction
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That is great news and consistent with the reporting from the small trial in Isreal. A trial is planned in Geneva, Switzerland where most of the Tamoxifen DMD research has taken place. A third is rumored to be forming in the US. Please continue posting about your sons progress as many of us would like to hear how it is working.
What other medicines or supplements is your son taking?
Do you happen to have any six minute walk distance data for your son? I think it would be really interesting to track that statistic to see how he is is progressing. In a clinic the protocol for a 6MWD is quite strict. For my purposes of monitoring progress we are using an indoor track at a local YMCA. We start the timer when he takes his first step and then measure the distances from the last known point when the six minutes is over. My son walked 417 meters in the six minutes. Comparing to statistics from clinical trials I know that is pretty good for an 8 year old who has never had any treatment as we are awaiting genetic testing. I plan to create a spreadsheet that I will share to track and graph this 6MWD data.
Our doctor was negative toward tamoxifen with concern that it might cause depression or in his words suicide. I am curious if you have seen any signs of depression? Personally I feel that every illness that Tamoxifen treats is quite depressing so I am uncertain that the drug is the cause.
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Permalink Reply by Alex on
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Please tell us at least every month about the state of your child and general observations. I really hope for tamoxifen as a support before finding a treatment..
Where do you buy tamoxifen?
Here is one more discussion of tamoxifen: http://community.parentprojectmd.org/forum/topics/tamoxifen-2
Shady said:the doctor didn't confirm using as it is still preclinical phase,so
I have took the risk of trying 4 months ago , my son is 7 years old now and thanks God he is still ambulant ,minor improvement since taking tamoxifen and he is stable now,his cpk was measured after 2 months from tamoxifen and reduced from 14,000 to 4000, hope that tamoxifen was the cause of such reduction
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In the US Tamoxifen, also known as Nolvadex or Tamifen, is inexpensive and available via off-label prescription. The complication would be finding a doctor willing to write the prescription. It looks like you are in Russia. I would guess that Tamoxifen would be easier to obtain for you. In the US a 30 day supply of 20mg Tamoxifen would cost $10 to $100 depending on the pharmacy.
I am not 100% certain that I would want to give my son Tamoxifen. Generally I have thought that I wanted to see more clinical data before involving my son with a new medicine. Although the preclinical mouse data is impressive and the anecdotal information coming out of Isreal is positive. We are currently awaiting diagnosis but I plan to discuss the possibility with our doctors once the genetic testing is complete.
Your son might be able to participate in Dr. Talia Dor's trial at the Hadassah Medical Organization in Isreal or the TAMDMD trial in Switzerland, France, Germany or Turkey.
Alex said:Where do you buy tamoxifen?
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Dear Alex,
Dear Bruce ,
I am from Egypt and it is sold under name of Nolvadex, I give him 10 mg once daily and it is cheap here, my decision to try tamoxifen is upon Mrs.Galia shared experience and it's promising results on mice,I have observed some improvement for my son since starting except for common symptoms like climbing stairs and gait walking but he came more energetic and cpk was dramatically reduced after 2 months almost 10,000 (old cpk value~ 14000 new value~ 4000)
Hope to be an effective treatment in the nearest future
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@Shady, thank you for the update. I am so glad that Tamoxifen is helping your son.
I also hope and pray for more effective treatments. For now we have to use what is available to keep our sons strong until better treatments are available.
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Thx for answer, will wait for results of your trial. I wish all the best to your family
Shady said:Dear Alex,
Dear Bruce ,
I am from Egypt and it is sold under name of Nolvadex, I give him 10 mg once daily and it is cheap here, my decision to try tamoxifen is upon Mrs.Galia shared experience and it's promising results on mice,I have observed some improvement for my son since starting except for common symptoms like climbing stairs and gait walking but he came more energetic and cpk was dramatically reduced after 2 months almost 10,000 (old cpk value~ 14000 new value~ 4000)
Hope to be an effective treatment in the nearest future
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Hello Shady,
I was wondering if your son is still using tamoxifen, if so, how is he doing? I also want to know how you started it. Is a doctor checking your son, or are you doing it all by yourself.
Kind Regards,
Sandro
Shady said:the doctor didn't confirm using as it is still preclinical phase,so
I have took the risk of trying 4 months ago , my son is 7 years old now and thanks God he is still ambulant ,minor improvement since taking tamoxifen and he is stable now,his cpk was measured after 2 months from tamoxifen and reduced from 14,000 to 4000, hope that tamoxifen was the cause of such reduction
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Sandro, if you use Facebook please join https://www.facebook.com/groups/1358298754297012/
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Hi Bruce,
Thank you for the link. I've just ask for membership.
Bruce Ward said:Sandro, if you use Facebook please join https://www.facebook.com/groups/1358298754297012/
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