Pancreatic Cancer Group: Introduce yourself and connect with others

Thanks again markymarkfl.

Few more questions popped up from the "home team"...LOL

1. May I ask why they did so many rounds (12) of chemo pre-Whipple for you and what was your
original CA-19 before chemo? I did 5 rounds to shrink the tumor as it was too close to the superior mesenteric artery. My CA-19 was 246 at its highest before surgery and dropped to 38 after chemo and before surgery. My first "check" now after surgery and recovery; CA19 is 400 now w/out the tumor.
2. How much has your weight changed, pre-Whipple to post Whipple to last 12 months while you've been on your latest chemo.
3. How is your “quality of life” on chemo for last 12 months versus pre-Whipple? (exercise, travel, work, etc.) I find even now without chemo for months I get tired easily and tend to move much slower. I use to bike, gym, swim before - now I'm only doing long walks and some light weights.
4. I tolerated Folfirinox very well pre-Whipple, however, after the surgery/complications when I
was finally ready and thought I was strong enough for chemo (4 months after surgery) I ended
up back in the hospital after only one round (dehydration due to side effects). Although
everyone says G+A is more tolerable, I wonder if I will be able to tolerate it, especially long
term? (for the next year - at 3 weeks on and one week off)
5. Are you aware of any PANCAN patient having the metastasis spread to the spine and their
experience/outcome? (My latest CT and MRI this month shows no growths in the abdominal area - although a couple of lymph nodes seem swollen)

Thank you once again.

1. My pre-Whipple protocol was "TNT" -- Total Neoadjuvant Therapy. They wanted a "full course" (12 treatments) before surgery in case I wasn't able to get or tolerate adjuvant chemo (after the surgery). My CA19-9 was 175 before chemo and 236 six months later, after 12 rounds of Folfirinox. I don't think these were the best decisions. The pre-Whipple Folfirinox really didn't do much; seems like time wasted. As an athletic 58-year old with excellent performance status, they should have concluded I would recover well enough for adjuvant chemo. And getting no chemo after my Whipple was probably a big contributor to the recurrence growing and spreading so fast.

2. Prior to PC diagnosis, I weighed 175. Had started seriously dieting and exercising and successfully losing weight. The first 15-20 pounds were intentional, but by the time I turned yellow (jaundice) I weighed in at 145 (total span of 3 months), and that's where I was when EUS/biopsy confirmed original cancer. On 6 months of Folfirinox, I actually regained all 30 pounds. My wife is a really good cook! But the bile duct stent helped me start getting nutrition from my food again, and being less physically active made it easier to put the pounds back on. I lost 15 pounds again in 2-4 weeks after the Whipple, but have stabilized there (fluctuating between 155 and 160) for most of the last 16 months.

3. Quality of life has been OK, with variations. On Folfirinox, there was fatigue, but hope that Whipple would fix everything. Post-Whipple 3 months (despite recovery adjustments) were ecstatic because I was NED and back to jogging 3 miles. News of my recurrence came right after my dad's terminal mesothelioma diagnosis. I was his primary caregiver until his passing 9 months later, as well as struggling with some hellish aspects of my job while my wife was also having major health issues. So... there was a LOT going on to affect quality of life negatively. Most of that is now all resolved and has simplified life significantly. But my overall physical fitness took a dive in that period as much due to stress and inactivity as due to cancer and chemo. Like you, I'm down to long walks and very light weights, but with Ritalin, better sleep, and a blood transfusion, I've got a very positive outlook for a return to greatness in the near future. 🙂 Snowboarding and surfing have been out for a while. I get way too winded at sea level to even consider freezing temps above 8000' elevation, and being out in the ocean is just not wise with my currently reduced endurance. At least I can stand still like an idiot and ride my skateboard down a hill with no trouble.

4. My 5th round of Folfirinox (coupled with other factors) caused a crash that sent me to the ER, but other adjustments got me through 7 more rounds with fewer issues. GAC has really been much more tolerable for me, but I do know one patient who had a very bad reaction to Gemcitabine (lung and heart issues) and had to switch to Folfirinox. Damned if you do and damned if you don't, I guess... You should at least ask your Onc if the biweekly G+A regimen is feasible for you. It would be much easier on your body, and you could monitor CA19-9 and Signatera until the next scans to see if it's working well enough. If not, and you're tolerating the G+A, you could then either return to the 3/4 schedule or see about adding cisplatin and continuing biweekly like I'm doing.

5. Not aware of anyone with confirmed spine mets. What I had showing up at spinal T7 on my previous MRI was not reported as a concern on the follow-up MRI. They still seem to think it's only a benign hemangioma.

You crack me up! Returning to greatness in the near future, huh? Seriously, I admire your spirit. It's a privilege to (virtually) know you and the others on this board.

1. My pre-Whipple protocol was "TNT" -- Total Neoadjuvant Therapy. They wanted a "full course" (12 treatments) before surgery in case I wasn't able to get or tolerate adjuvant chemo (after the surgery). My CA19-9 was 175 before chemo and 236 six months later, after 12 rounds of Folfirinox. I don't think these were the best decisions. The pre-Whipple Folfirinox really didn't do much; seems like time wasted. As an athletic 58-year old with excellent performance status, they should have concluded I would recover well enough for adjuvant chemo. And getting no chemo after my Whipple was probably a big contributor to the recurrence growing and spreading so fast.

2. Prior to PC diagnosis, I weighed 175. Had started seriously dieting and exercising and successfully losing weight. The first 15-20 pounds were intentional, but by the time I turned yellow (jaundice) I weighed in at 145 (total span of 3 months), and that's where I was when EUS/biopsy confirmed original cancer. On 6 months of Folfirinox, I actually regained all 30 pounds. My wife is a really good cook! But the bile duct stent helped me start getting nutrition from my food again, and being less physically active made it easier to put the pounds back on. I lost 15 pounds again in 2-4 weeks after the Whipple, but have stabilized there (fluctuating between 155 and 160) for most of the last 16 months.

3. Quality of life has been OK, with variations. On Folfirinox, there was fatigue, but hope that Whipple would fix everything. Post-Whipple 3 months (despite recovery adjustments) were ecstatic because I was NED and back to jogging 3 miles. News of my recurrence came right after my dad's terminal mesothelioma diagnosis. I was his primary caregiver until his passing 9 months later, as well as struggling with some hellish aspects of my job while my wife was also having major health issues. So... there was a LOT going on to affect quality of life negatively. Most of that is now all resolved and has simplified life significantly. But my overall physical fitness took a dive in that period as much due to stress and inactivity as due to cancer and chemo. Like you, I'm down to long walks and very light weights, but with Ritalin, better sleep, and a blood transfusion, I've got a very positive outlook for a return to greatness in the near future. 🙂 Snowboarding and surfing have been out for a while. I get way too winded at sea level to even consider freezing temps above 8000' elevation, and being out in the ocean is just not wise with my currently reduced endurance. At least I can stand still like an idiot and ride my skateboard down a hill with no trouble.

4. My 5th round of Folfirinox (coupled with other factors) caused a crash that sent me to the ER, but other adjustments got me through 7 more rounds with fewer issues. GAC has really been much more tolerable for me, but I do know one patient who had a very bad reaction to Gemcitabine (lung and heart issues) and had to switch to Folfirinox. Damned if you do and damned if you don't, I guess... You should at least ask your Onc if the biweekly G+A regimen is feasible for you. It would be much easier on your body, and you could monitor CA19-9 and Signatera until the next scans to see if it's working well enough. If not, and you're tolerating the G+A, you could then either return to the 3/4 schedule or see about adding cisplatin and continuing biweekly like I'm doing.

5. Not aware of anyone with confirmed spine mets. What I had showing up at spinal T7 on my previous MRI was not reported as a concern on the follow-up MRI. They still seem to think it's only a benign hemangioma.

1. My pre-Whipple protocol was "TNT" -- Total Neoadjuvant Therapy. They wanted a "full course" (12 treatments) before surgery in case I wasn't able to get or tolerate adjuvant chemo (after the surgery). My CA19-9 was 175 before chemo and 236 six months later, after 12 rounds of Folfirinox. I don't think these were the best decisions. The pre-Whipple Folfirinox really didn't do much; seems like time wasted. As an athletic 58-year old with excellent performance status, they should have concluded I would recover well enough for adjuvant chemo. And getting no chemo after my Whipple was probably a big contributor to the recurrence growing and spreading so fast.

2. Prior to PC diagnosis, I weighed 175. Had started seriously dieting and exercising and successfully losing weight. The first 15-20 pounds were intentional, but by the time I turned yellow (jaundice) I weighed in at 145 (total span of 3 months), and that's where I was when EUS/biopsy confirmed original cancer. On 6 months of Folfirinox, I actually regained all 30 pounds. My wife is a really good cook! But the bile duct stent helped me start getting nutrition from my food again, and being less physically active made it easier to put the pounds back on. I lost 15 pounds again in 2-4 weeks after the Whipple, but have stabilized there (fluctuating between 155 and 160) for most of the last 16 months.

3. Quality of life has been OK, with variations. On Folfirinox, there was fatigue, but hope that Whipple would fix everything. Post-Whipple 3 months (despite recovery adjustments) were ecstatic because I was NED and back to jogging 3 miles. News of my recurrence came right after my dad's terminal mesothelioma diagnosis. I was his primary caregiver until his passing 9 months later, as well as struggling with some hellish aspects of my job while my wife was also having major health issues. So... there was a LOT going on to affect quality of life negatively. Most of that is now all resolved and has simplified life significantly. But my overall physical fitness took a dive in that period as much due to stress and inactivity as due to cancer and chemo. Like you, I'm down to long walks and very light weights, but with Ritalin, better sleep, and a blood transfusion, I've got a very positive outlook for a return to greatness in the near future. 🙂 Snowboarding and surfing have been out for a while. I get way too winded at sea level to even consider freezing temps above 8000' elevation, and being out in the ocean is just not wise with my currently reduced endurance. At least I can stand still like an idiot and ride my skateboard down a hill with no trouble.

4. My 5th round of Folfirinox (coupled with other factors) caused a crash that sent me to the ER, but other adjustments got me through 7 more rounds with fewer issues. GAC has really been much more tolerable for me, but I do know one patient who had a very bad reaction to Gemcitabine (lung and heart issues) and had to switch to Folfirinox. Damned if you do and damned if you don't, I guess... You should at least ask your Onc if the biweekly G+A regimen is feasible for you. It would be much easier on your body, and you could monitor CA19-9 and Signatera until the next scans to see if it's working well enough. If not, and you're tolerating the G+A, you could then either return to the 3/4 schedule or see about adding cisplatin and continuing biweekly like I'm doing.

5. Not aware of anyone with confirmed spine mets. What I had showing up at spinal T7 on my previous MRI was not reported as a concern on the follow-up MRI. They still seem to think it's only a benign hemangioma.

I have stage 3. Pancreatic cancer. I’m wondering if I can travel if I’m considered NED and between appointments?

I was diagnosed on June 7, 2023 as stage 2b. I have had 12 chemo treatments. I receive care at a clinic of excellence, which does over 250 Whipples a year.
At my last scan this last week, the PET scan didn't light up anything in the tumor area (head), but the tumor is still there and had shrunk 3 mm. (no spread was seen by the scan). I am scheduled to have the Whipple procedure on Feb 15th. Surgeon said surgery will take 5 1/2-6 hours. My last chemo was Jan 18th. I am trying to get stronger before surgery, trying to walk more. I still feel fatigued and weak at times. My surgeon has to leave the day after my surgery to go out of the country to speak for her work, and she will be gone a week. She is assured she can take care of any of my problems after surgery, over the phone. At this place of excellence, there are 5 other surgeons who do this same surgery, so I am trusting I will still be in good hands even though she will not be there for a week after my surgery.

If you believe in prayer, please pray that my surgery will be successful, that I won't have any long -lasting complications after surgery, and that I will be able to recover quickly and well. Thank you.

I am scared to death of this surgery, and I'm scared to death to not have this surgery. Thank you.
p.s. The scan picked up something in the back of my right hip; the doctor asked if I had fallen or had a bruise- I have no clue what the scan is picking up. I have not fallen and don't have a bruise or pain in that area. The doctor didn't seem concerned; the scan suggested an MRI.
Any advice about anything I have mentioned above is appreciated. Thank you.

Note to myself:
"Worry does not empty tomorrow of its sorrow; it empties today of its strength. "
Holocaust survivor Corrie ten Boom

Thank you once again for the "lengthy" replies. Actually, they really are the best !!
You help fill in a lot of "holes" that are left open on my various oncologist visits.

Had a great visit with a new doctor today - radiologist - I actually got the CT mapping done today - within hours after my consultation meeting. I should be starting radiation treatment next week for the lesion on my T4 vertebrae. He's think 80-90% chance they will be able to eliminate it completely. Although this is the most visible issue, the Oncologist thinks that there may be issues elsewhere that are just not showing up yet on the CT scan.

G+A should be starting in early March - So I will hit up the onc will on trying to get it changed to bi-weekly rather than the standard 3 weeks on and 1 week off. The standard treatment seems like it would be pretty fatiguing constantly.

How was it decided to do the Signatera test? I'm wondering if I should be talking with my oncologist about that.

thanks again, Walter