Stage IV - what's next

Posted By
Amanda's Mom
12/6/2018 3:04pm
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Replies: 3

Amanda has been on all of the "protocol" treatments.  She has done really well on the Cotellic and Zelboraf combo, until now.  Multiple tumors in the lungs and almost double in size since September.  We see the Dr Monday for the "plan".  Possible trial..    I am trying to stay positive, while my daughter feels that she is starting these next months as the end.  She also has a new pleural thickening. I can't make sense of that.

Thank you

sing123 - (12/6/2018 - 9:09pm)

I am so sorry. Will keep you both in my thoughts. 

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo

WithinMySkin - (12/6/2018 - 10:48pm)

I saw that Amanda has been on Keytruda on another post as well as a few other treatments, but I didn't see that she's been on Ipi/Nivo. Definately worth looking into if she hasn't tried it. Also, speaking as a 34 year old who was diagnosed at 31, it's hard to find others in this age group who can relate. If she wants to reach out and chat with a fellow melanoma gal, she can always reach me through my blog www.withinmyskin.com

Thoughts and prayers to you and Amanda,

Lauren

WithinMySkin

www.Withinmyskin.com

 

lilred75 - (12/14/2018 - 6:19am)

I am sorry to hear of your daughter's disease progression during current treatments. I have not been on these boards in forever, and I am not familiar with your daughters history, but I am a 14 year stage III/IV melanoma survivor. I was 29 when oriignally diagnosed stage III. Two years later it went to my lungs to make me stage IV. My last scan showing disease and treatement was over 10 years ago. It is scary, and maddening, and feels hopeless, but I am living proof that treatments CAN work despite some grim statistics. Since diagnosis I have gotten married and currently have two daughters in 1st and 2nd grade. My heart goes out to other young cancer fighters and their families as I remember what it feels like to not only be fighting this horrible disease, but be doing it at a relatively young age. It can be very lonely even when surrounded by people who love you because no one your age can relate to what you are going through. I use to chuckle I was ALWAYS the youngest patient in my onc's waiting room by a good 25+ years! Let her, and yourself get angry, and grieve, and then get a plan in place and tackle it. If it doesn't work, find something new. There is so much more out there now than even when I went through treatments. My doctors also use to say "We just have to keep you alive long enough to find the next best thing in treatment for melanoma". I am old now ;), but if she wants to chat I would be happy to do so. Keep us posted and positive thoughts she finds the magic combo to get those tumors halted.

Miracles can happen to those who believe in them.