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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
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?
@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.
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
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
Sandro, if you use Facebook please join https://www.facebook.com/groups/1358298754297012/
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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