Tamoxifen

Dear all,

My 9 years old son has been taking Tamoxifen for 2 months now. He is taken care of by a wonderful team in Hadassah Hospital, Jerusalem.The drug considerably improved his condition: He can walk far longer, better and has more energy overall. And there are no side effects.

Just wanted to share.

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Replies to This Discussion

Permalink Reply by Vivek on April 20, 2017 at 12:39pm
Hi Galia

Thanks for your reply. I am really happy for you that uour son is showing improvements. Are CPK levels also coming down?
Permalink Reply by Galia Ben Ishay on April 25, 2017 at 8:44am

Not really, only 300 less so far, but improvement is here and that's of course the most important.

Permalink Reply by Sai Chand. Gurujala on April 25, 2017 at 8:57am

Hi Galia,

I think still "Tamoxifen" is in clinical trials right. It does not come into market yet right?

Permalink Reply by Moein on April 26, 2017 at 4:51pm
It is already in the market for breast cncer

Sai Chand. Gurujala said:

Hi Galia,

I think still "Tamoxifen" is in clinical trials right. It does not come into market yet right?

Permalink Reply by Sai Chand. Gurujala on April 27, 2017 at 6:48am

Hi Moein,

Officially Tamoxifen has not become DMD medicine right. Still in clinical trials right?  Please share.



Moein said:

It is already in the market for breast cncer

Sai Chand. Gurujala said:

Hi Galia,

I think still "Tamoxifen" is in clinical trials right. It does not come into market yet right?

Permalink Reply by Galia Ben Ishay on April 28, 2017 at 7:02am

Yes Sai Chand, it is still in clinical trial for DMD.

Permalink Reply by Shady on June 9, 2017 at 6:22pm
Hi Galia any updates / improvement about tamoxifen with your child now?
Permalink Reply by Galia Ben Ishay on June 15, 2017 at 1:09pm

Hi Shady,

After improving it seems that he has stabilized now. I hope it will be forever...

Shady said:

Hi Galia any updates / improvement about tamoxifen with your child now?
Permalink Reply by Shady on June 17, 2017 at 12:59pm
Wishing your son and all of our sons a good health forever
Permalink Reply by Nita McGauran on July 11, 2017 at 10:48pm

My 6 year old has the same exon deletions 8-9. Here's hoping Tamoxifen get's approved soon!

Galia Ben Ishay said:

My son has deletion of exons 8 and 9. Anyway Tamoxifen is not mutation specific.

Permalink Reply by Sai Chand. Gurujala on July 21, 2017 at 10:08am

So it is applicable for duplication exons as well right?

Nita McGauran said:

My 6 year old has the same exon deletions 8-9. Here's hoping Tamoxifen get's approved soon!

Galia Ben Ishay said:

My son has deletion of exons 8 and 9. Anyway Tamoxifen is not mutation specific.

Permalink Reply by Galia Ben Ishay on July 23, 2017 at 11:20am

Yes, I've understood it's for ALL mutations.

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