Connect
← Return to What exactly is NED (no evidence of disease)?
Discussion
What exactly is NED (no evidence of disease)?
Pancreatic Cancer | Last Active: Jul 9 6:43am | Replies (20)Comment receiving replies
@stageivsurvivor
I am awaiting my ctDNA results. Told they could result in a false positive but I have decided I will request continued fulfurinox if it reads positive.
Do you remember when you dropped the “ox”? Thinking about the effectiveness of it vs the neuropathy. Also I tend to think it was behind losing so much hair Your thoughts?
Replies to "@stageivsurvivor I am awaiting my ctDNA results. Told they could result in a false positive but..."
Connect
Thanks @stageivsurvivor! I wish I could have continued on the folfirinox longer as well. I seemed to be in a decent rhythm with it as far as side effects but had to change things up due to increasing blood markers. My goal is the same.
@gamaryanne
How many cycles of chemo did u do? I had 22cycles of Folfirinox and then high dose radiation (at my request) when markers started to slowly climb. Then went back on Gemabraxin for a few cycles which wrecked havoc on my gut. So I requested the new regimen of recently approved chemo-basically a gentler fulfironox-AND Y90 on a small liver lesion.
The initial radiation seems to have taken care of the primary pancreatic tumor. It has not changed in over a year. Hoping the Y90 has eliminated the liver lesion. Currently waiting for scans and blood work to see where we are. This gives me a break from chemo which is scary, but at the same time allows me to do more with my family.
I feel like it’s all a juggling act and worry that the break from chemo allows the cancer to spread. But at the same time, how do we know if there is anything left to treat? Or am I kidding myself??
Trying to stay positive but the worry creeps in.
Thank you to both of you. Reading these posts has made me push for treatment outside of “standard” practice even tho it involves more travel to better centers.