- May 31, 2017 at 4:22 am
Hello my friends.
I wanted to let you know the latest with my Dad. Its been a bit of a roller coaster ride for sure. BUT, as of this moment ALL of his scans are CLEAN!!!! His doctor is absolutely amazed at the response he has had to opdivo/ipi. His liver numbers have been on a roller coaster ride, but we think we finally have it under control. Dad went for his MRI a few weeks ago and the doc said it was "as clean as a whistle", words that you want to hear from your Neuro. They took him off of anti-seizure meds and steroids, oddly enough he had a small seizure about 3 days later and had to go to ER. So he is back on the seizure meds and a very small does of steroids. He had his first Keytruda infusion about 9 days ago, so far so good. He is not feeling that "well' since the seizure, but we attribute it to the meds.
So as of this moment he is NED. Its shocking to be able to say that, and I know that could change quickly, but for now I am so grateful. His doc at the Angeles clinic is an absolute doll, we love her so much.
To be honest, I have held off posting this because I am still scared. I am not superstitious, but I am almost afraid to say it out loud, i don't know if that makes sense.
Anyway, I am still reading the board often, I am so sorry that there are so many new members:(
Thinking of you all especially: Josh, Deb, Jenn, Niki, Celeste, Adrianna & Rob, Ed, and a few others I am sure I have missed.
miaka618ParticipantAwesome! Hopefully the NED sticks like super glue!
- May 31, 2017 at 10:54 am
- May 31, 2017 at 1:51 pm
Congratutaolons on such wonderful news Jen…..
May it last forever.
- May 31, 2017 at 3:00 pm
Dear Jen, i am sooo happy for your dad and your entire family, brings so much hope to all warriors….
sister of patientParticipant
- May 31, 2017 at 3:45 pm
That is such great news – so pleased for your Dad and your family! May this last forever!!!!
- May 31, 2017 at 4:43 pm
So glad for your Dad and your family!
You are doing such a great job with your posts for others who are fighting this terrible beast.
I would like to hope that one day may be I will be able to post a similar good post about my husband.
- May 31, 2017 at 5:05 pm
So happy for your and your family Jen! I remember that you have Dr. Morganna Freeman at Angeles. I saw her speak at the Angeles Clinic Melanoma Symposium a couple of weeks ago and she seemed amazing (we have Dr. Hamid, who we love too)!
- May 31, 2017 at 11:43 pm
She's doing well right now even though we are waiting to start the IMCGP100 trial! The Angeles Clinic is really much more approachable and hands on with their patients, and we are also so happy that we are there now as well! We just took a trip to MD Anderson (per Dr. Ribas at UCLA's suggestion) to see what trials are available there as a backup (really interesting studies about microbiomes), and I'll start a separate post about that visit when I get a chance in case anyone finds that information useful. Your dad's story is really inspiring and I really hope that we find something that is going to work for my mom too.
- May 31, 2017 at 7:13 pm
Wonderful news, we are so happy for your family. I'm in the reluctant to post mode as well so I understand. I pinch myself everyday, wondering how I can feel this great, in my 5th year at Stage IV and off all meds. There really is hope in the new immunotherapies. Woo hoo!
- June 1, 2017 at 9:00 pm
Ahhhh! I'm so happy to hear this! "Clean as a whistle!" BOOYAH! I've never been off of Keppra, and likely never will be. Too much radiation. **cheesy happy to be here grin** Hopefully the not feeling well is the steroids… although I do have a fellow melahomie in Pasadena area who didn't do well with Keppra and had to change anti-seizure meds until he found something that was a better fit for his system.
Had to chuckle a bit with you not wanting to say anything out loud….. My hubs is always telling me "Stop saying things like that! Don't even joke about it, because what you say seems to come true!" Ha! The good news is that your dad is doing well. The bad news is that it starts the next level of stress in staying well. ; ) When things are going bad, you just really really want them to swing in your favor. When they finally do, you start the fear circle of losing that positive motion. Why do we do that as humans? Are we just wired to wig out? On a positive note, it means your perfectly normal…. oooooor… I'm perfectly weird too. Hmmmmm. : )
- You must be logged in to reply to this topic.