Out of the study

Posted By
3/20/2014 2:13am
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Replies: 5

Hello all!

I have been in a study nivo/dacarbazine for 12 weeks now. I have hoped that I got nivo but my new MR showed progress so I am out of the study. My MM is in sinus maxillaris and masseter, upper yaw, palatine bone are involved and its growing next to the scullbase. I have had max radiation in this area a few years ago when my MM first started in my nose cavity. So radiation nor surgery is an option. Probably I will get ipi now. I have been told that I will never know which arm I was in. If MM proceed they assume I got dacarbazine. I am quite upset and depressed now but feel a lot of comfort visiting this forum. 


Bubbles - (3/20/2014 - 9:52am)

So sorry, Inger. I would feel really sad and upset, too!!  There are many folks on this forum with good results on ipi and I am wishing that for you as well.  Hang in there!  Yours, Celeste

tschmith - (3/20/2014 - 10:17am)

I too am sorry this has happened to you.  Hopefully the FDA will approve Nivo soon.  I know we're all wishing for that.  Praying that another and better door will open for you.


page85 - (3/21/2014 - 12:17pm)

Inger, You are right, this support group is TOPS for making one feel better.  I had no idea MM could affect one in the nasal cavity.  Are you in a lot of pain?  Does this affect your breathing?  Are you on an oxygen machine?  You will be in my thoughts and prayers.


Jahendry12 - (3/22/2014 - 8:51pm)

We are all here for you. Hang in there and try to stay positive!

Ninniditti - (3/23/2014 - 3:43am)

I have mucosal melanoma in my right nosecavity which has spread to my left sinus. I have pain especially in my left upper yaw but all the space from my upper yaw to the eyes can ace. I use painkillers. It was more easy to endure the pain when I was hoping I got PD-1in the study. Now I feel miserable and can't feel much hope but I feel comfort by your answes.