Hi - we are looking into going on the trial at Memorial Sloan on the Epizyme EZH2 inhibitor EPZ-6438, Tazemetostat. Has anyone tried this? Can you please share your experience? Thank you. Trish
Hi, I am on the waiting list… As the trail didn’t start yet. Phase1 looked promising… And I have gone through all other options…
Someone else started allready?
I have my starting day 15th of February... . That's another long 2 weeks to survive...
Have you pushed them to move the start date up? Stay positive and keep yourself busy. All the best. Trish
I've pushed them the whole time (becuz they promised me it would start first half of december) :). thruth is I'm just number and a statistic... it really doesn't matter too them.
Taking it now for 5 days.. No real side effets apart from mild naussea so far. :)
Thanks for the update. I pray this treatment will be successful. All the best.
Hi Kaiowas - how are you doing on this treatment? thank you, Trish
Kaiowas said:
Taking it now for 5 days.. No real side effets apart from mild naussea so far. :)
Anybody try this drug?
Trish, I will share again the discussion...
Hi Kaiowas - how are you making out on this drug? Thank you. Trish
Kaiowas said:
Taking it now for 5 days.. No real side effets apart from mild naussea so far. :)
I LL post a full story asap. Tomorrow its 2months and the first CT… Full of stress atm
Good luck. All the best. Trish
Kaiowas said:
I LL post a full story asap. Tomorrow its 2months and the first CT... Full of stress atm
OK I am going to keep it short.
First concerning the side effects. I had just one. So the mild nausea increased to very heavy nausea and a burning stomac. After a week of throwing up I finally got. decent medication for it. Primperan, litican and motillium were not enough… But zofran got me through the last 2 weeks. So that became severe as I was throwing up everything I ate and drank. I did notice an apple was a good combination with the pills. No other major complaints.
Second : it didn’t work… Not even a bit. Tumor in my abdomen doubled to 20cm! My abdomen is full with tumor. Several new ones appeared. The one in my lung invaded my heart and spleen. Also my left lung completely collapsed… So yeah one big shock yesterday
Hi Kaiowas - I am so sorry to hear this news. All the best in evaluating the next treatment. My daughter has had success with high dose ifosfamide and trabectedin for some time. Also, I hear the NY-ESO immunotherapy is working good. Please use this site to look at other options. Take care, Trish
Dear Kaiowas, this is so scary :-( I hope you are not in pain. You were running out of options before this trial, does that mean they are going to give up on you now? I wish you a miracle...
Kaiowas said:
OK I am going to keep it short.
First concerning the side effects. I had just one. So the mild nausea increased to very heavy nausea and a burning stomac. After a week of throwing up I finally got. decent medication for it. Primperan, litican and motillium were not enough... But zofran got me through the last 2 weeks. So that became severe as I was throwing up everything I ate and drank. I did notice an apple was a good combination with the pills. No other major complaints.
Second : it didn't work... Not even a bit. Tumor in my abdomen doubled to 20cm! My abdomen is full with tumor. Several new ones appeared. The one in my lung invaded my heart and spleen. Also my left lung completely collapsed.. So yeah one big shock yesterday
My son will be starting on this trial as soon as 6 weeks…could be longer. In the mean time he’s taking 600 mg of votrient daily. So far he’s got a bit of a cough but doing ok. I’m praying for some good news, as everything has been negative for a long time. They told us to make this the best year of his life …
Wise advice. You never know what the future will bring so you may as well try to make the best of the present… I do hope the trial works for him! Good luck!
Hi - good morning. How is your son making out on the EZH2 trial? All the best, Trish