There is hope!

Posted by whilted @whilted, Jul 24, 2023

Hi everyone,

It's been a while since I've posted here. My mom was diagnosed with pancreatic cancer in July 2022 and underwent 6.5 months of Folfirinox, with surgery as the main goal. After consulting with Dr. Truty, however, we were told that she was not eligible for surgery, which was devastating. However, he let us know that my mom responded so well to treatment and had "years" ahead of her. He suggested that she do chemoradiation as a destination therapy.

After breezing through chemoradiation in early May, my mom embarked on a 3-week trip to Europe. My mom had zero issues on our trip. In fact, she walked over 80 miles with me! Two weeks after we came back from Europe, we went on another trip to NYC. Again, no issues whatsoever.

My mom had her first follow-up visit a little under two weeks ago and did her first CT scan since completing treatment. I was panicking because her CA 19-9 numbers were elevated, but I couldn't believe what I saw on her imaging report: no evidence of discrete mass. The tumor in her pancreas vanished! The report noted there was an area that was potentially infected or inflamed, so maybe that explains the elevated CA 19-9 numbers. Her doctors want to follow up again in a month, but other than that, we're so grateful.

I was and still am in great disbelief, but I want to share this positive news with others and hopefully instill hope into some of you.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

You're going to encounter a few people on this forum who have had to switch oncologists to find one they mesh well with. I guess the trick is knowing when to jump ship. You don't want to abandon a good one over something small, especially if it's close to home. I don't think a good oncologist would be offended if you sought a second opinion, but if you're not comfortable sharing that desire, you can always seek the second opinion without their knowledge. However, it takes time to get that second consultation, meaning you need to start early so you can actually have it in an actionable time frame.

With the pancreas, you can't afford to fool around. Everyone should be striving to be seen at least once by specialists at a center of pancreatic excellence. If you're already at one, you (your mom) might choose to just stay with them, but be aware that there is a huge diversity of opinions and several treatment options at different centers.

If you're actually getting more CA19-9 and other bloodwork done in 2 weeks from now instead of a month from now, that's probably often enough for now. I wouldn't leave a good doctor solely over that, but I did leave a local generalist oncologist who was testing my CA19-9 monthly while I was on biweekly Folfirinox for a specialist 2.5 hours away who is testing it every two weeks along with my new biweekly post-Whipple chemo (Abraxane + Gemcitabine + Cisplatin), and I don't regret it at all. If your mom's CA19-9 increases on the upcoming test, that alone should be a call for much more aggressive action, at which point you can make those wishes known to her oncologist again.

As I've said several times here, you might get the same drugs at different providers, but you don't necessarily get the same care, skill, expertise, facetime, or communication as you might get elsewhere. It all matters. My dad (RIP last week) chose a hometown generalist to treat his mesothelioma and paid a very heavy price. šŸ™ At age 85, it was hard getting him in a true, fighting mindset, and your mom might be a similar case.

Even if there is "no discrete mass" on imaging, there could be "MRD" (minimal residual disease) circulating in the bloodstream, and one of the tests based on ctDNA (circulating tumor DNA) should be able to pick that up.

Get as many of your options as possible locked and loaded to fire in parallel, so everything is in place when you have to make that next decision. It may help avoid things being dragged out serially for too long.

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@markymarkfl

You're going to encounter a few people on this forum who have had to switch oncologists to find one they mesh well with. I guess the trick is knowing when to jump ship. You don't want to abandon a good one over something small, especially if it's close to home. I don't think a good oncologist would be offended if you sought a second opinion, but if you're not comfortable sharing that desire, you can always seek the second opinion without their knowledge. However, it takes time to get that second consultation, meaning you need to start early so you can actually have it in an actionable time frame.

With the pancreas, you can't afford to fool around. Everyone should be striving to be seen at least once by specialists at a center of pancreatic excellence. If you're already at one, you (your mom) might choose to just stay with them, but be aware that there is a huge diversity of opinions and several treatment options at different centers.

If you're actually getting more CA19-9 and other bloodwork done in 2 weeks from now instead of a month from now, that's probably often enough for now. I wouldn't leave a good doctor solely over that, but I did leave a local generalist oncologist who was testing my CA19-9 monthly while I was on biweekly Folfirinox for a specialist 2.5 hours away who is testing it every two weeks along with my new biweekly post-Whipple chemo (Abraxane + Gemcitabine + Cisplatin), and I don't regret it at all. If your mom's CA19-9 increases on the upcoming test, that alone should be a call for much more aggressive action, at which point you can make those wishes known to her oncologist again.

As I've said several times here, you might get the same drugs at different providers, but you don't necessarily get the same care, skill, expertise, facetime, or communication as you might get elsewhere. It all matters. My dad (RIP last week) chose a hometown generalist to treat his mesothelioma and paid a very heavy price. šŸ™ At age 85, it was hard getting him in a true, fighting mindset, and your mom might be a similar case.

Even if there is "no discrete mass" on imaging, there could be "MRD" (minimal residual disease) circulating in the bloodstream, and one of the tests based on ctDNA (circulating tumor DNA) should be able to pick that up.

Get as many of your options as possible locked and loaded to fire in parallel, so everything is in place when you have to make that next decision. It may help avoid things being dragged out serially for too long.

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My mom's oncologist made it clear to us that he wants to test her again in mid-August and if it continues to increase, he will propose a new plan, so it really seems like he is really taking things into consideration. Both of my parents like him and they trust him, so at some point, I have to respect my mom's wishes. I've already reached out to Dr. Truty's team for a second opinion and I am in the middle of getting an appointment scheduled at UCLA. Even though my mom's scan showed no mass, I knew it wasn't time to fully celebrate. The day after I read my mom's report, I immediately got in touch with different oncologists, so that's already all happening in the background!

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I've generally noted this previously, but my opinion, based on my sister's battle, is to relocate to the center of excellence, use their oncology system which has been turned to mesh with their surgical system which connects well with their testing processes.

I know relocation is difficult, but my sense is that any delays are bad in that the cancer is afforded more time to grow. Also, in a very broad sense, I've read so many stories of survival with more chemo, than with less - to the point where I would push for more chemo.

Try to make sure your schedule is not dictated by the scheduling of the various supporting mechanisms, but is as aggressive as possible - assuming suitable physical condition.

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@frygirl777

Iā€™m glad your mom is seemingly clear and feeling great & that you had a great vacation! Iā€™m a bit confused though as pancreatic ductal dilatation normally means the ducts are dilated very possibly due to ductal adenocarcinoma. Iā€™m not a doctor but that is exactly what my CT scan report read when the initial hospital I landed in had diagnosed me with necrotizing pancreatitis which was inaccurate. The day I was discharged from the hospital I had an MRI. They couldnā€™t see the tumor at that time due to so much inflammation but a month later, after drinking organic celery juice every morning on an empty stomach to reduce inflammation, the gastroenterologist ordered another follow up MRI and there was the tumor in the body/tail area of my pancreas, rearing itā€™s ugly head. I was able to have surgery thankfully and they diagnosed me as Stage 1B. I had a distal pancreatectomy with splenectomy. The tumor was unfortunately already growing outside the border of my pancreas anteriorly by the time I got in for surgery after Christmas, so I had to have radiation in my pancreatic bed after the surgery and am now 6 rounds into the 5-FU regimen with 6 more to go. Iā€™d question her oncologist about the ductal dilatation and maybe demand an MRI to take a closer look. This cancer is very tricky according to my pancreatic oncologist who is incredibly thorough. A nodule showed up on my uterus on the recent pelvic MRI that was not there on the CT scan that I had done 2 days earlier. I am now being referred to a gynecology oncologist for a consult. My oncologist says the nodule likely is not related but could be a different type of cancer. I had cervical cancer many years ago that was removed with surgery. No issues since until now. I hope I donā€™t need a hysterectomy on top of all this! You honestly canā€™t be too careful! Maybe Iā€™m being cynical but from what Iā€™ve learned about this disease, being in the clear is a sketchy diagnosis to make. I hope I get to NED one day but am so nervous due to being told by 2 other oncologists, whom I saw, that pancreatic cancer always shows up elsewhere within 2-3 years, it is hard to believe one will beat this easily.

Best wishes to your mom on her journey!

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Iā€™m interested in the comment - is there any preventative treatments to keep this in maintenance mode or from coming back? Iā€™ve started walking and PT post Whipple. Iā€™m researching diet and know I need more natural foods /Whole Foods. Are there any good supplements that you are taking? Thanks!

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