adriana cooper

I have been out of the loop for a while. Please take my advice only as my reaction to my past. Adriana’s Neuro-oncologist recommended IT DepoCyte as it had been effective and he had used it in trial. Both true for LMD breast cancer. I inquired about the fact that melanoma is chemo resistant. He assured us it was the route to go and that he had been in contact with her regular melanoma specialist. After ommya surgery, one treatment and weeks of chemical meningitis symptoms her melanoma specialist said stop the treatment as it is ineffective for melanoma. I barely could contain my anger. Near the end I inquired about the use of IT Anti-pd1 (keytruda/Opdivo) but was told that it likely wouldn’t be tried as it would be too strong. Months after Adiana’s death MDA announced just such a trial.
What Bubbles says.
I would get to MDA and talk to Dr. Glitza ASAP
Missing you Adriana.
Happy Thanksgiving
Rob

MDA Dr. Glitza investigate IT Pembro/ Nivo

Rob

Ryan, Sorry Late to this thread. I have been less frequent here for a while. Hello to all the great peeps here
Dr. Byrd, surgery, is the man.
Also have known Dr. Bhatia for a few years. Feel free to contact me directly with specific questions [email protected]
Rob

This news was a great shock to me and brought instant sadness. I know Celeste is strong. Please get better. If there is any thing I can do foy you or your family I would drop everything and drive across the country to do it.

All my strength.

Rob

 

Thanks Eric for your post.

https://www.ssdrc.com/askaquestion97.html

 

Did SSDI with Adriana  about 2 1/2 years ago (no pension)> Took stage 4 diagnosis papers in to local office (recurrence lump removal) lung biopsy and scans to prove dates. As quite a bit of time had passed only had to wait a month or two and receive a lump sum for "back pay" as did her kids.

 

Go do it. The Government is here to help :>)

Rob

Carrie, I am sorry to hear of your LMD progression. You might as about steroids (Dexamethasone) to counteract those fevers (rash too?) if you haven't already. Get out and enjoy the spring (if it has stopped snowing there yet) as much as you can. Prep your home for wheel chair (navigating/bathing) and hope you don't need it. Preparing at the last minute is a real challenge. My thoughts are with you and your husband. You or your husband please feel free to contact me ([email protected]) or phone  just to talk, with any questions or any kind of support you need.

Rob

Adriana was allowed to try this combo not on trial for a short while. ALT and AST  levels went a little wonky (not horribly) so she stopped the BRAFi but later returned to BRAFi only which had some success for a while. 

Advocate for what you and he feel is right. 

https://clinicaltrials.gov/ct2/show/NCT02968303?term=opdivo+and+zelboraf&rank=1

https://clinicaltrials.gov/ct2/show/NCT02818023?term=keytruda+and+zelboraf&rank=1

https://clinicaltrials.gov/ct2/show/NCT02910700?term=pd1+plus+braf&draw=2&rank=1

 

Best wishes

Rob

Please know how much it means that Adriana’s story has helped you, your sister and any other family. Even though time passes and treatments change I hope that it continues to help others. I spent much time reading the stories  of others and reaching out to make contact. Communicating with others on a personal level (Artie’s mom, Cindy and Cindyco, Paul, Maperny- Maria her son and her husband, Mickey and Samantha Stamps, Connie, Mikhail and Anna and other helped immensely.

Best wishes and Happy Holidays to all here

Rob

I think about you and all of your vast knowledge, kindness and how much you give to this community. I am grateful to have had you in our lives and do my best to honor you by paying it forward as best I can. You set a high standard.
I have been blessed in my life and consider myself very fortunate. I have many wonderful memories and am grateful for the time I got to spend with Adriana and all the experiences I have had because of her including sharing with folks on this board.
Best wishes to all of the patients, caregivers and family members on this board.
Rob
Rob

I am so sorry that you are going through this. Hold him tight. Make some recordings (I wish I had more video). You will have some precious moments that you didn’t even expect. Even though it seems he is not there, he is. He knows you are there.
Love.

Best wishes
Rob

BTW Ed and Celeste since you "apparently are working for big pharma"  could you ask your "bosses" to start some research (and publish) and trials on IT pembro/nivo for LMD. It seems to my uneducated mind that it would have a better chance with less side effects. Do you or any other sciency folks have any thoughts on this. I know it risky with runaway immune system potential.

Thanks, Rob 

Celeste, Your Feb. Post provides some great "new" information and results of the work they have been doing at MDA, thanks. I'm not sure if I will ever understand why no place else is willing to give it a try. Moving to Houston long term puts that treatment option out of reach for many. It is curious why concurrent use of BRAFi does less well??

Mr. Sarahsmiles1207, I am sorry your wife has received this diagnosis. I hate to hear of anyone with this diagnosis but it pains me more so for a new mother. 

I would recommend reviewing Adriana's story here https://www.melanoma.org/find-support/patient-community/patient-stories/adriana-cooper

as well as my post to Carrie aka doxiemom here https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/spread-spinal-fluid#comment-112201

In short if she is in early stage with few deficits I would try and get in to MDA with Dr. Glitza TOMORROW for a consult if moving to Houston for relatively long term is not off the table with an understanding that daily IT-IL2 is no picnic and that that treatment is far from a guarantee from a cure and that the time you spend there may be no different or even more challenging than if you were to stay home. 

Treatment  early is her best hope for any long term success. The choices are difficult and different for each individual based on the circumstances of their life. 

Please understand that this is only my opinion based on my research during our experience and my communication with other LMD patients and caregivers this past year. I am not a medical professional so please take or leave any of this as you want but it is from my heart.

I am happy to answer any questions or provide any support I can for you here or by email [email protected] or phone

Sincerely, Rob Murphy

Being without my wife and best friend is a challenge every day. I miss you Adriana.