Trying one more...

[kellyOd]

Ryan is not doing well. Insane tumors on top of the skin. Radiation. More radiation. Restarted Keytruda in January. Not doing anything unfortunately. We may be able to get into the B1 arm of ONC-392 and Keytruda. That’s where we are headed. His 32nd birthday is April 2nd. I am hoping he feels well that day so we can try and not focus on cancer so much..

Drained ladies... drained.

Love from MD xoxox

[SGHSweethearts]

Kelly, I am so sorry to hear things are not working for Ryan right now. I am sending so many prayers, that he will be able to get into, is it a trial you are mentioning? May God put his loving, and protecting arms around Ryan and you. I hope he is able to enjoy his Birthday coming up. I can only imagine how drained you both are, it has been a tough long while now. I keep hope that he finds relief again soon.

Michele

[doulagirl]

Kelly, I am so so sorry to hear this and I hope and wish and pray he gets into the trial and finds relieve. I pray you enjoy each others company and have a blast on his birthday, you are so very strong! Sending you positive vibrations and lots of prayers <3 Take care of yourself <3

Dorothe

[Crycleo]

Sorry to hear this—it just sucks. Keeping you both in my thoughts and prayers. Sending ❤️.

[MeAndMom]

Oh Kelly, I'm so sorry to hear about this. How was Ryan's Birthday? I'm familiar with mets on top of the skin (tumors both open and protruding from underneath) from my mother's experience and I know it's a whole other dimension. Ryan is not Braf positive, right? Are there any other clinical trials that could be a possibility? Keeping you both in my heart. Love, Nadia

[kellyOd in reply to MeAndMom]

He is BRAF positive and we have exhausted everything. Even tried to do them twice.

The wounds are so incredibly hard for me. I am by no way squeamish but they leak. Makes it hard for him to wear shirts. It’s so hard. And I do dressing changes twice a day...

[MeAndMom]

I’m so sorry. I will message you now..

[strawberryjam]

Kelly

My heart is with you and Ryan . I know how knowledgable you are about melanoma but just a thought - injecting the tumors with one of the oncolytic viruses ( i think they do herpes type , polio type). Injection worked for my son awhile ago. Hoping and praying that he gets into that trial and that it works for him.

[kellyOd]

TVEC - yes we will try that if he washes out of the trial. We were going to do that next before the trial became available