Pancreatic Cancer Group: Introduce yourself and connect with others

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.

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.

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.

@diana865 this is great news! Shrinkage means that you are on a regimen that is working! For some that is not the case and they have to keep changing regimens.

@waltsocal
I am now a 24 month thriver of this disease. Diagnosed stage IV.
I’ve seen se real for second opinions at different points and asked many questions. I have surmised that PETs are not seen as necessary when tumor markers, scans, and biopsies confirm cancer. Systemic chemo is their answer to cool the fires-wherever they may be raging. CT machines that incorporate PET scans exist and I have done this twice. It sometimes highlights areas that are not cancer-most often thyroid .

MRIs of the local areas like pancreas or liver are the most helpful to surgeons for truly understanding how/when/and possibility to get you to a
surgical next step.

I’m nothing special but I definitely have not quick work or volunteering where I can be useful. We can control a few things.. our diet, our rest, who we surround ourselves with but most important is your attitude. Choose to think of this as a chronic disease that can be managed. If your doctors don’t see it this way, perhaps look for a group that does. Often it’s led by our attitudes, not them!💜💜

You're very welcome. Wish I had better answers, but I'll give you what I've got:

1) If I get chemo on a Friday, the fatigue usually lets up by Monday evening, so I have 10 good days before the next treatment. You would get 3 good days between 1st-2nd and 2nd-3rd treatments, then 10 good days between 3rd and 4th, etc... Maybe less fatigue for you without the cisplatin. Maybe less fatigue if you're also retired. 😉 Consider pestering them about a blood transfusion if necessary.

2) I've heard several oncs say people with mutations of the ATM gene do well with a platinum-based therapy. I don't recall seeing the paper, but my current onc cited Eileen O'Reilly from MSKCC in explaining his choice of my regimen. They wouldn't mix Oxaliplatin with Gemcitabine (untested and/or double serious risk of neuropathy), so GAC is what I got.

3) I'm not sure what's up with some doctors and their thoughts on PET scans. I've heard the radioactive sugar (FDG?) tracer is very expensive. I've heard docs say the PET is generally just used after finding a single tumor (at initial diagnosis) to get a "global" look at the rest of the body for mets. One doc told me they can see all the "attributes" distinguishing live tumors from necrotic tissue on their MRIs, and once they're only looking in a small region (e.g. abdomen) for tumors, they can actually see finer details on MRI than they can on PET. But, there are machines that combine the technology (PET+MRI or PET+CT) where they can get the benefits of both in one scan.

I have not had a PET scan since my initial diagnosis 2.5 years ago, despite asking several times. I might get one this spring if things work out, but it's iffy. My big beef is that I requested a PET scan 1.5 years ago after my recurrence was first spotted on MRI. They were not 100% sure the mass was cancer, so they immediately followed up with EUS biopsy, which was negative and diagnosed as chronic pancreatitis. The outcome of that was to wait 6 weeks and redo an MRI, which (along with CA19-9 and positive Signatera) convinced them it was indeed a recurrence of the cancer.

The bummer is that I think an immediate PET scan would have seen radioactive sugar uptake in the tumor and overruled the bad EUS biopsy soon enough for me to have surgery or start chemo before the mets occurred. 🙁

If I could rewind time, I would have been a LOT more assertive about getting the PET scan and paying for it myself if insurance didn't.