1. < Pancreatic Cancer

Abort chemo Rx & go straight to surgery while I am still Stage 1?

Posted by mbcfl @mbcfl, Oct 28, 2023

I was very fortunate in how my stage one pancreatic cancer was diagnosed. In August 2023, I had an unrelated intestinal surgery and three weeks later I developed a fever and pain. So I had a CT scan September 11, which showed an abscess from the prior surgery and also showed the presence of a 1.4 cm pancreatic tumor in the neck of the pancreas. Follow up CT on 9/13 and MRI imaging on 9/26 of the 1.4 cm lesion showed total containment without vascular involvement. The recommendation was NeoAdjunctive therapy followed by surgery. I was started on Gemzar/Abraxane, three weeks on, one week off, starting 9/29/23 in Cincinnati, Ohio, where I am currently residing.
We are actually Florida residents, so after completion of the first chemo cycle, flew down to Tampa for a second opinion at the Moffitt Cancer care center in Tampa. We were seen by their surgical and medical oncologist on October 18, 2023. This was the day after they repeated labs, did another CT and pet scan. The pet scan was negative, but the CT scan now showed that there was contact between the lesion, measured at 1.8 cm, , and 2 veins underneath, and there was branching that was less than 180°. So in just three weeks this was a new finding but the cancer itself was still contained in the pancreatic neck.

The initial Ca 19-9 was 345 on 9/13/23, then 575 on 9/29/23 in Cincinnati.
Mayo measured it on 10/17/23 as 745.
So it is rising very rapidly, despite 1 cycle of Gemzar/Abraxane.

My medical oncologist in Cincinnati repeated it yesterday. His thinking is if the tumor marker is not going in the right direction to either change chemo to FOLFIRINOX, which would increase chemotherapy duration to mid December prior to next surgical consult at Moffitt . Which will delay the surgery until at least mid to late January. The other option is to discontinue chemo now and wait the required 4+ weeks to proceed with surgery which would be around late November. The tumor is located in the neck of the pancreas, and directly underneath is an intersection of blood vessels . Moffitt has already informed me if I stick to the current plan, they would repeat the CT in December to see IF I still am a surgical candidate. I NEED TO BE A SURGICAL CANDIDATE!!!
So to me it seems my best option is to stop the chemo and get the surgery done ASAP. The surgical oncologist at Tampa is rated very highly. He has been doing the procedures for 20+ years. However, he only does an open approach. My surgical oncologist in Cincinnati is younger and has 9 years of experience. He seems very knowledgeable and well respected. He says he does 52 pancreatic cancer surgeries per year, and that he would do it robotically. According to PanCAN, University of Cincinnati performs 150 pancreatic cancer surgeries on an annual basis. I am sure it is much higher at Moffitt but have been unclear on getting exact numbers. According to the Moffitt website, they claim for stage one they can increase survival percentage from 40% to 60%.

So here are my questions regarding opinions: rather than trying the
FOLFIRINOX, which would delay surgery until mid or late January, IF I am still resectable by then, my thinking is to ask for surgery ASAP. Since I just began my second cycle with my first treatment yesterday of Gemzar/Abraxane, I suppose I would still need to wait four weeks before surgery. But I need to check with my medical and surgical oncologist about that, I guess.
I hesitate to switch to Folfirinox, as I know it is associated with a lot more toxicity, which would make it harder for me to regain my strength to get ready for an eight hour, complicated and arduous surgery. At the moment, I have done well with the side effects on my current regime. Most days I am eating well and most days I walk at least 30 to 60 minutes every day. So could continue to do this to prepare for the surgery.

My other question is regarding where to have the surgery done. opinions, please!
Would I be better off having it at Moffitt, which is a high-volume pancreatic cancer center, performed by a highly rated pancreatic cancer surgical oncologist, even though he only performs open procedures?
The other option would be to have it done at University of Cincinnati, with a younger surgical oncologist, who performs 52 robotic surgeries annually.

All of my oncologists in Cincinnati and Tampa are in agreement with additional chemotherapy being added after the surgery, probably three cycles within 8-10 weeks after surgery.

Any comments in a timely fashion would be much appreciated as my medical oncologist will be calling me on Monday with the latest CA 19- 9 results. Even if it has decreased, I don’t think that would affect my desire/decision to have the surgery done ASAP.
I have read online where you can go from stage one to stage four in a matter of months.
Thank you in advance for your comments!

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

stephenkogler | @stephenkogler | Oct 29, 2023

Hello,
My diagnosis was 10/27/2022. I was treated at Johns Hopkins in Baltimore. I followed their advice which was 8 FOLFIRINOX prior to surgery (we did 9) and 4 after (we did 3). The tumor stopped growing and shrank slightly after the third treatment. During the pre-surgery chemo pause (surgery was 4/24/2023) , there was some small tumor growth again. The fist scan post surgery was clear and my CA-19 last week was the lowest. 4. You have a tough decision. I approached it as a few months of morbidity vs. mortality. I felt good some days and miserable others. The worst week of sickness was the third week after surgery while withdrawing from the narcotics. Overall today, one year post diagnosis, I walk 2-4 miles every day and have a mostly normal diet (no animal fat) and I am looking forward to the next decade. Good Luck.

REPLY
2 replies
gamaryanne | @gamaryanne | Oct 29, 2023

Do remember that CA19-9 scores will often rise before they fall. It is taxing I know!

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mayoconnectuser1 | @mayoconnectuser1 | Oct 29, 2023

My thoughts - I am not a medical professional.

This disease is sneaky and hard to beat - if me, I would relocate to one of the handful of centers of excellence with specific focus in pancreatic cancer. As an example, Mayo Rochester is one of these, but Mayo Jacksonville is not. MSKCC and John's Hopkins and MD Anderson are, I believe.

Quick note on CA 19-9. It is a secondary, sort of tracking blood market test. Any number above either 34 or 37 (manufacturer dependent) may mean pancreatic cancer, but there is no "better than" relationship if the number is lower than those numbers.

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1 reply
mbcfl | @mbcfl | Oct 29, 2023
In reply to @stephenkogler "Hello, My diagnosis was 10/27/2022. I was treated at Johns Hopkins in Baltimore. I followed their..." + (show)
@stephenkogler

Hello,
My diagnosis was 10/27/2022. I was treated at Johns Hopkins in Baltimore. I followed their advice which was 8 FOLFIRINOX prior to surgery (we did 9) and 4 after (we did 3). The tumor stopped growing and shrank slightly after the third treatment. During the pre-surgery chemo pause (surgery was 4/24/2023) , there was some small tumor growth again. The fist scan post surgery was clear and my CA-19 last week was the lowest. 4. You have a tough decision. I approached it as a few months of morbidity vs. mortality. I felt good some days and miserable others. The worst week of sickness was the third week after surgery while withdrawing from the narcotics. Overall today, one year post diagnosis, I walk 2-4 miles every day and have a mostly normal diet (no animal fat) and I am looking forward to the next decade. Good Luck.

Jump to this post

Hi, thank you for sharing. What stage were you in before surgery and how long after stopping chemo did you have to wait before your surgery? Was it robotic or open and how long where you in the hospital?
Sounds like you made the right decision ultimately and I hope to follow in your footsteps with how you are doing and feeling now!
The best of luck to you!
Marilyn

REPLY
1 reply
mbcfl | @mbcfl | Oct 29, 2023
In reply to @stephenkogler "Hello, My diagnosis was 10/27/2022. I was treated at Johns Hopkins in Baltimore. I followed their..." + (show)
@stephenkogler

Hello,
My diagnosis was 10/27/2022. I was treated at Johns Hopkins in Baltimore. I followed their advice which was 8 FOLFIRINOX prior to surgery (we did 9) and 4 after (we did 3). The tumor stopped growing and shrank slightly after the third treatment. During the pre-surgery chemo pause (surgery was 4/24/2023) , there was some small tumor growth again. The fist scan post surgery was clear and my CA-19 last week was the lowest. 4. You have a tough decision. I approached it as a few months of morbidity vs. mortality. I felt good some days and miserable others. The worst week of sickness was the third week after surgery while withdrawing from the narcotics. Overall today, one year post diagnosis, I walk 2-4 miles every day and have a mostly normal diet (no animal fat) and I am looking forward to the next decade. Good Luck.

Jump to this post

Hello, I appreciate your sharing. What stage were you when diagnosed and what did your tumor measure? How long did you need to wait for surgery after stopping your chemo?
Was your surgery robotic or an open procedure?
Were you still in the hospital during the third week when they withdrew you from the narcotics?
I am so happy to hear that one year later you seem to be resuming a normal life which is my intention also. Thank you for sharing.!
Marilyn

REPLY
stephenkogler | @stephenkogler | Oct 29, 2023
In reply to @mbcfl "Hi, thank you for sharing. What stage were you in before surgery and how long after..." + (show)
@mbcfl

Hi, thank you for sharing. What stage were you in before surgery and how long after stopping chemo did you have to wait before your surgery? Was it robotic or open and how long where you in the hospital?
Sounds like you made the right decision ultimately and I hope to follow in your footsteps with how you are doing and feeling now!
The best of luck to you!
Marilyn

Jump to this post

Hi Marilyn,
I was Stage 1b prior to chemo and it was stage 2 when removed. It was about 6 weeks from #9 chemo prior to surgery. I had open surgery and went home on Saturday. I could’ve stayed in the hospital for one more day. I did feel a little pushed out. Reason I chose the open surgery was because the surgeon said that it was a six hour surgery as opposed to the robotic, which was eight hour surgery. He stated that the recovery is virtually the same. The only complication I had was a small infection in the incision site. We had to keep the wound open and packed for about five weeks. I’m doing pretty good right now. I still have fatigue and I’ve developed a heart arrhythmia which we can’t figure out. I still have my Powerport inserted and I’m wondering if it’s related.

I did about 40 videos to keep my friends informed I’ll put the link below for you:

REPLY
2 replies
wjk | @wjk | Oct 29, 2023

mbcfl - For what it's worth.... Similar to you, I was recently (May 2023) diagnosed with Stage 1b adenocarcinoma at the head/neck of my pancreas. At that time I had a CA19.9 high of 641 and some limited tumor entanglement with major venous blood vessels. Following treatment with Folfirinox (4 cycles) I switched to a Gemcitabine/Abraxane regimen due to severe reaction to Folfirinox. My last infusion of Gem/Abrax was 3 days ago. My most recent CT Scan (3 weeks ago) shows some small shrinkage of tumor and a most recent CA19.9 level of 55 three days ago. My plan, as recommended by Mayo Clinic - Rochester, is to return there (I reside in Alaska) in one week for further exams, 3-4 weeks of radiation therapy with reduced dose IV Gemcitabine, followed by a 4 week break. I anticipate having the Whipple in early January led by a very experienced surgeon and team at Rochester who will do the surgery robotically. (It's unclear to me what criteria was used to have me lined up with a Mayo surgeon who only does Whipples robotically versus another experienced Mayo surgeon who only does Whipples with open surgery. IMHO there are good arguments for each method.)

I share your concerns about the best treatment route to follow, especially given the ongoing debate among pancreatic oncologists and surgeons about the preference for surgery first, followed by adjuvant chemo vs. neo-adjuvant chemo/radiation followed by surgery. I am especially concerned about post-surgical reoccurrence of cancer months later. It seems somewhat of a crapshoot no matter which treatment plan we follow.

Good luck to you says this 75 year old guy.

REPLY
1 reply
mbcfl | @mbcfl | Oct 29, 2023
In reply to @wjk "mbcfl - For what it's worth.... Similar to you, I was recently (May 2023) diagnosed with..." + (show)
@wjk

mbcfl - For what it's worth.... Similar to you, I was recently (May 2023) diagnosed with Stage 1b adenocarcinoma at the head/neck of my pancreas. At that time I had a CA19.9 high of 641 and some limited tumor entanglement with major venous blood vessels. Following treatment with Folfirinox (4 cycles) I switched to a Gemcitabine/Abraxane regimen due to severe reaction to Folfirinox. My last infusion of Gem/Abrax was 3 days ago. My most recent CT Scan (3 weeks ago) shows some small shrinkage of tumor and a most recent CA19.9 level of 55 three days ago. My plan, as recommended by Mayo Clinic - Rochester, is to return there (I reside in Alaska) in one week for further exams, 3-4 weeks of radiation therapy with reduced dose IV Gemcitabine, followed by a 4 week break. I anticipate having the Whipple in early January led by a very experienced surgeon and team at Rochester who will do the surgery robotically. (It's unclear to me what criteria was used to have me lined up with a Mayo surgeon who only does Whipples robotically versus another experienced Mayo surgeon who only does Whipples with open surgery. IMHO there are good arguments for each method.)

I share your concerns about the best treatment route to follow, especially given the ongoing debate among pancreatic oncologists and surgeons about the preference for surgery first, followed by adjuvant chemo vs. neo-adjuvant chemo/radiation followed by surgery. I am especially concerned about post-surgical reoccurrence of cancer months later. It seems somewhat of a crapshoot no matter which treatment plan we follow.

Good luck to you says this 75 year old guy.

Jump to this post

From this 70 year old gal, I thank you for sharing!
I agree with you, it is pretty much rolling the dice…
The statistics say that even after surgery, there is a 75 % risk of recurrence, but if that is the hand we have been dealt, I need to play it . I just don’t want to risk not having the surgical option since that’s the only shot for a longer survival/cure.
Have they said they will have to do some reconstruction of your veins for you? What is the degree of branching - is it greater than 180°?
Do you mind sharing how large your tumor was at initial diagnosis?
I wish you the best and apparently there is no place better for you to be than Mayo.
Moffitt’s Cancer Center in Tampa Florida is in the top 10 so hopefully that will be good enough for me🤞
Good luck to us both!
Marilyn

REPLY
1 reply
mbcfl | @mbcfl | Oct 29, 2023
In reply to @stephenkogler "Hi Marilyn, I was Stage 1b prior to chemo and it was stage 2 when removed...." + (show)
@stephenkogler

Hi Marilyn,
I was Stage 1b prior to chemo and it was stage 2 when removed. It was about 6 weeks from #9 chemo prior to surgery. I had open surgery and went home on Saturday. I could’ve stayed in the hospital for one more day. I did feel a little pushed out. Reason I chose the open surgery was because the surgeon said that it was a six hour surgery as opposed to the robotic, which was eight hour surgery. He stated that the recovery is virtually the same. The only complication I had was a small infection in the incision site. We had to keep the wound open and packed for about five weeks. I’m doing pretty good right now. I still have fatigue and I’ve developed a heart arrhythmia which we can’t figure out. I still have my Powerport inserted and I’m wondering if it’s related.

I did about 40 videos to keep my friends informed I’ll put the link below for you:

Jump to this post

Thank you for sharing, I will watch the videos .
Good luck with your continued recovery, and I hope they figure out what’s going on with the arrhythmia. I have a smart Port as well.
(I am guessing the majority of people on this blog do too).
Marilyn

REPLY
mbcfl | @mbcfl | Oct 29, 2023
In reply to @stephenkogler "Hi Marilyn, I was Stage 1b prior to chemo and it was stage 2 when removed...." + (show)
@stephenkogler

Hi Marilyn,
I was Stage 1b prior to chemo and it was stage 2 when removed. It was about 6 weeks from #9 chemo prior to surgery. I had open surgery and went home on Saturday. I could’ve stayed in the hospital for one more day. I did feel a little pushed out. Reason I chose the open surgery was because the surgeon said that it was a six hour surgery as opposed to the robotic, which was eight hour surgery. He stated that the recovery is virtually the same. The only complication I had was a small infection in the incision site. We had to keep the wound open and packed for about five weeks. I’m doing pretty good right now. I still have fatigue and I’ve developed a heart arrhythmia which we can’t figure out. I still have my Powerport inserted and I’m wondering if it’s related.

I did about 40 videos to keep my friends informed I’ll put the link below for you:

Jump to this post

Hi Steve, I can only pull up the very first intro video. You are a great looking guy by the way.🤗

Can you try resending the other link so I can watch your other videos
Many thanks!

REPLY
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