Hi,
It has been a month since my daughter’s relapse…After going through the Plasma Exchange, she still not fully awake…Dr is considering using a chemotherapy drug Cyclophosphamide to inject next week.
Anyone has experience this before…?
Wow. Very sorry. Haven’t heard of that. I wish her well
My son aged 31 had 3 rounds of Cyclophosphamide and 1 round of Rituxan The lesions. finally stopped growing after the 4th chemo treatment. They were spread about 3 weeks apart. Chemo helps to stop the growth of the lesions we were told and based on the MRI results it seems to have worked. The steriod and plasma exchange just slowed some of the growth but my son's ADEM was very severe. His neurologist we were told is one of the best in the country and he recommended the chemotherapy. He was hospitalized April 2015 and the lesions only stopped growing November 2015. Just hang in there. Healing is such a slow process with Adem but every week we see slight changes. Try and be positive when you can and do not lose hope. He just had another round of Rituxan last because his white blood cell count was toohigh. His body seems to handle the chemo quite well. Sending you lots f positive energy and love. Hope all goes well with your daughter.
The following links may be helpful in understanding the treatment of ADEM:
https://www.youtube.com/watch?v=gvbgeqJv-2Y
Hi Sarah,
Thank you so much for your sharing…the Dr might want to do.a brain biopsy to be 100% sure is ADEM before he gives the cyclophamide jap…wonder if that’s necessary as her CT scan has shown no abnormalities in the brain blood vessels.
It sounds scary to do brian Biopsy…
Anyone has any comment?
Yes it scary do do a brain biospy. Make sure the surgeon is skilled enough to do the brain biopsy. I also wished it could have been done without a biospy. We had further complication from the biospy. The surgeon that did his did not close the hole created in the brain. Did not close the duraflap and did not apply bone cement and this caused his brain to herniate and a fluid buildup in the brain. To rectify this we had to do another surgery to drain the fluid from the brain and close the hole. Every case is different just make sure the surgeon knows what he is doing. The second surgeon we had was very good. Our doctors based most of their findings on the MRI. In my sons case the biospy helped because of the initial wrong diagnosis of PML (JC virus). They were also able to tell conclusively with further testing that he had ADEM and not MS. Hope this helps. Patience has a new meaning for me now. All the best to you and the family. Praying and hoping that all goes well.