Pancreatic cancer relapse

Johns Hopkins Hospital, if you're in the mid-Atlantic.

Wishing your stepdaughter well -- and you, and everyone else who cares about her / worries about her.

@di341 there are excellent pancreatic oncologists at John’s Hopkins. As recommended previously , it is very good to have a connection at a center of excellence that hosts clinical trials in case you should be a fit for one. Connecting with MSK, or MD Anderson or JH is a solid angle for this and would be a great second or third opinion. C

I’m in the same boat … many liver lesions appeared on my most recent 3 month scan. Biopsy today to confirm … but everyone is pretty certain is cancer again. My oncologist at Mayo is recommending Genzar+Abraxane … the thought being that my cancer has seen 14 rounds of Folfirinox, let’s hit it with something that it hasn’t seen. My hope is that we can kill off enough of the lesions to get to the point where the few remaining can be removed.

I’m full of fight … the Folfirinox treatments didn’t slow me down much. I am ‘visualizing thriving’ and I’m looking for input … thoughts … whatever you want to offer.

@bobsrdoch , If you've seen 14 rounds of Folfirinox, I think you'll do fine on Gemzar+Abraxane. You might as well ask your oncologist if it's worth adding Cisplatin to the mix.

Cisplatin was a recommended add-in for my Gemzar+Abraxane because of the ATM mutation. But since Oxaliplatin was a part of your Folfirinox, it seems like they had no objection to giving you platinum-based agent in the first place, regardless of which mutation(s) you have.

I had 12 rounds of Folfirinox before Whipple. My CA19-9 bounced around a bit in the 120-240 range over that time, with a general trend upward. My surgeon graded the tumor response as "partial."

One month post-Whipple my CA19-9 went down to 12, but peaked near 700 six months later before I began treatment for the recurrence. After 16 rounds of GAC, it's down to 40. I'll find out what the scans say in a couple weeks about actual tumor response -- it's been declared "stable disease" on two previous MRIs. Hard to tell how much of the MRI size measurements are live tumor vs dead.

But, my response to GAC is undoubtedly better than it was to Folfirinox, and I find it more tolerable as well. So, I'm offering prayers, good thoughts, best wishes, and a big dose of encouragement. Never give up!

Find experts, make sure that you are seen at a center of excellence. Self advocacy is essential. Some of the top places are Dana Farber Cancer Institute, Memorial Sloan Kettering Cancer Center, Weill Cornell University Medical Center, Columbia University, New York University Langone, Johns Hopkins University, MD Anderson, Mayo Clinic. I had surgery at Sloan Kettering (I live outside of NYC). My care was tops

National Pancreas Foundation Center of Excellence Listing
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
Pancreatic Cancer Action Network can also help you connect with resources
https://pancan.org/

@bobsrdoch
Absolutely! Never give up! I was diagnosed stage iv with liver lesions scattered everywhere Fulfurinox shrunk them together so that I could get to surgery!

In June another small tumor appeared in a totally unrelated area. Same advise-do Gemzar. Was apprehensive at first; esp knowing the success of fulfurinox. Sure enough, my body is reacting positively now. At first the tumor marker flew up but it’s since trended downward every two weeks. The side effects are very different but manageable if planned into your schedule. Beyond chemo to stabilize, there are more modalities to use to get to surgery. So do not give up, by any means!
Stage IV 20 month THRIVER!!

Hello friends.
It's been a while since I posted. Have been dealing with confusing medical issues. At last post, I was getting an EUS performed on 2 lymph nodes and suspicious area found in pancreas. The doctor performing the EUS could not find those nodes or the suspicious area and told me my remaining pancreas post whipple was very healthy looking. That was about 6 weeks ago or so. As of last scan 1 week ago, I now have a mass on my pancreas and more lymph nodes. I will be starting a modified folfirinox chemo treatment on Monday. I originally was given folfirinox for first cancer treatment, but was unable to tolerate it, so this time around they will be playing with the dosages. My back hurts all the time now. And, I have to say, I'm pretty scared of what will happen to me.
Something strange did happen after I left the oncologists office on Wed. I was filled with a feeling of peace and knowing I would be ok. I had that same feeling after my very first go round with cancer 20 months ago. Just a wave of peace and feeling I would be ok. My daughter, who was in my hospital room, told me she had that same feeling wash over her.
So, on the one hand I am dreadfully afraid, and on the other hand I feel confident that I will beat this cancer for the second time. I guess I really dont have a question here. Thank you for letting me voice e my fears. I appreciate all of your support, and if you or a loved one is going through a similar challenge, I offer my blessings and prayers to you.

I did an extensive round of folfurinox in 2022 and had surgery.

A reoccurrence in my liver appeared in June and multiple sources recommended Gemzar.
It also has worked quite well. You might ask about it as an alternative if you don’t handle the Folfurinox well.

I always think of Ruth Bader Ginsburg. She had the Pcan and lived a full life for a very long time. I’m sure her doctors surveilled her very very closely!

Just continue to be your own advocate and ask questions!
I believe God gives us peace to continue to be all we can be and enjoy the beauty all around us!!

Hi. Well, here I am at first folfirinox treatment. I asked my doctor to take the oxaliplatin out of the mix today, and they agreed. I am much relieved. Thank you for your comment. It's so wonderful getting encouragement and loving concerns and words.

@lilliejane2, checking in. How are you doing with the first Folfirinox treatment minus the oxaliplatin?