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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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Hi Galia

Thanks for your reply. I am really happy for you that uour son is showing improvements. Are CPK levels also coming down?

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

Hi Galia,

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

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?

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?

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

Hi Galia any updates / improvement about tamoxifen with your child now?

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?
Wishing your son and all of our sons a good health forever

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.

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.

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

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