1. < Pancreatic Cancer

Your experience with IMRT (radiation) + capecitebine (oral chemo)?

Posted by jk77 @jk77, Nov 28, 2023

Hello. I'm getting ready to start 28 treatments. I have some "prepare yourself" literature from the pharmacy and from the radiation oncologist's office, but if anyone feels inclined to share their own experience with this combo, I'd be grateful for any info.

Thanks, everyone.

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 1, 2023
In reply to @fatherjonz "September 1, 2022 a spot was noticed on my pancreas… antigen about 550. My two family..." + (show)
@fatherjonz

September 1, 2022 a spot was noticed on my pancreas… antigen about 550. My two family practice doctors suggested “false positive “, best to wait a few months and retest.
January 2023 retest antigen 900. MRI shows tumor. February biopsies taken. February 22, 2023 I was given cancer diagnosis. February 24, 2023 was my first visit to the Mayo Clinic-Phoenix to begin treatment.

Jump to this post

@fatherjonz

So, it sounds like your first round of chemo began in February of this year. Did the cancer respond to the former chemo you were taking?

I would like to invite @markymarkfl and @stageivsurvivor to join in this discussion with you. They are both long-time survivors of Stage IV pancreatic cancer and I think you will find their experiences encouraging.

Is there any discussion of surgery at this point?

REPLY
fatherjonz | @fatherjonz | Dec 1, 2023

Hi, Thanks.
Began infusions in March. (G&A)
Over the months there were 9.

Two hospitalizations, about one month each.
Serious infections. Cellulitis. Weak to the point of not being able to walk.

Response: Some (a little) tumor shrinkage. No metastasis.

Surgery is not a good option. Scar tissue from a splenectomy 11 years ago. Physical weakness after chemo.

So the radiation with oral chemo seems to be the best and last option.

REPLY
1 reply
jk77 | @jk77 | Dec 2, 2023
In reply to @fatherjonz "Hi, Thanks. Began infusions in March. (G&A) Over the months there were 9. Two hospitalizations, about..." + (show)
@fatherjonz

Hi, Thanks.
Began infusions in March. (G&A)
Over the months there were 9.

Two hospitalizations, about one month each.
Serious infections. Cellulitis. Weak to the point of not being able to walk.

Response: Some (a little) tumor shrinkage. No metastasis.

Surgery is not a good option. Scar tissue from a splenectomy 11 years ago. Physical weakness after chemo.

So the radiation with oral chemo seems to be the best and last option.

Jump to this post

fatherjonz, fwiw I've just had two radiation treatments + oral chemo. A little nausea (controlled by generic Zofran and generic Phenergan), a little diarrhea, and some fatigue.

I was hoping that I wouldn't experience side effects this early -- I haven't fully recovered my energy level and appetite since my Whipple surgery (10-5-23) -- but these side effects aren't terrible. Now I'll know to take the anti-nausea and anti-diarrhea meds in advance, so that should help.

Again, everyone responds differently, but so far the side effects are manageable. I'm scheduled for 28 treatments (and I suspect that I'll be a little less sanguine at the conclusion, but side effects are better than a recurrence).

I'm sorry that you had such a tough time with IV chemo, and I wish you well with radiation + oral chemo.

REPLY
fatherjonz | @fatherjonz | Dec 2, 2023

Hi, Thanks for your reply, for sharing your experience.
Hearing about your side effects and how you treated them is helpful.
Your 28 treatments is nearly double the 15 that I am scheduled for.
I like your observation about recurrence…. So very true.

REPLY
thawk32 | @thawk32 | Dec 5, 2023
In reply to @stevm "Marie, I wish you luck as well. This is a challenging cancer. I was diagnosed at..." + (show)
@stevm

Marie,
I wish you luck as well. This is a challenging cancer. I was diagnosed at Stage 3. My biopsy pre surgery was inconclusive as they could not get a good sample. I agreed to have the tumor removed as the surgeon assured me that it was in a good spot for removal and he was 75% confident that it was non cancerous. The morning after surgery he stopped by quickly to say that the margins were clean. That left me feeling hopeful until 5 days later when I received the pathology report. I was shocked to learn that I was Stage 3. I had minimal symptoms leading up to my diagnosis. I very slight feeling on my left side that I attributed to a muscle pull. My genetics indicated KRAS as well. I'm being treated at Mass General Boston. As much as I'm not looking forward to taking the 5FU with radiation, I figured I'm all in at this point. I've been reassured that it won't be as bad as 12 cycles of Folfirinox. The Oxaliplatin is torture. They eliminated it for the last two cycles as my neuropathy had worsened. Hoping that it's not permanent. Again, all the best to you in your journey. Steve

Jump to this post

Hi Marie,
I will be starting radiation treatment at Mass General in Boston. The team at Mass General wants to give me radiation before possible surgery to shrink the tumor. I did 52 chemo treatments at Lowell General Hospital over 2 1/2 years.
I feel confident with Dr. Fernandez and his team to treat this cancer. Good luck on everything you’re in my prayers.

REPLY
1 reply
gamaryanne | @gamaryanne | Dec 5, 2023
In reply to @mnewland99 "Hello stevm, I wish you luck in your treatment. My case was similar to yours as..." + (show)
@mnewland99

Hello stevm,
I wish you luck in your treatment. My case was similar to yours as I was a distal, stage 2, 12 rounds of chemo; marker at 6. My surgeon thought I would go on the oral chemo, but my oncologist looked shocked when I told her. She said the usual mantra “your margins are clear and your antigen low” and said no reason for it. Now I understand that may not mean much right after chemo. My genetics like most is the KRAS g12-d. Dr never explained what that meant and only after chemo did I look it up and then understand why longevity can be a challenge with this disease without the right treatment. I take it you were a stage 2? May I ask which facility you received your care? I applaud your drs for taking that extra step of insurance in fighting this disease and wish you well.

Jump to this post

@mnewland99
Regarding the KRAS G12-D-have you found a clinical trial that is open ?

REPLY
1 reply
stevm | @stevm | Dec 5, 2023
In reply to @thawk32 "Hi Marie, I will be starting radiation treatment at Mass General in Boston. The team at..." + (show)
@thawk32

Hi Marie,
I will be starting radiation treatment at Mass General in Boston. The team at Mass General wants to give me radiation before possible surgery to shrink the tumor. I did 52 chemo treatments at Lowell General Hospital over 2 1/2 years.
I feel confident with Dr. Fernandez and his team to treat this cancer. Good luck on everything you’re in my prayers.

Jump to this post

You are a real trooper. 52 rounds of chemo! God bless you. Good luck with everything going forward. I will also keep you in my prayers.

REPLY
marienewland | @mnewland99 | Dec 6, 2023
In reply to @gamaryanne "@mnewland99 Regarding the KRAS G12-D-have you found a clinical trial that is open ?" + (show)
@gamaryanne

@mnewland99
Regarding the KRAS G12-D-have you found a clinical trial that is open ?

Jump to this post

No, I didn;t know if any exist, but I thought those were only for stage4 which I could be in now.
My antigen just started recently going up from 6 to 23 to 32 (I think) to 74, 47, and now 233 and only within period of 1 month, I think. I'm a little overwhelmed right now with the news as I was only 92 last year right before I had my tumor removed! I did have a negative PET scan, so my drs. aren't concerned though I had one at 74 and now I;m 233 so would a scan show differently now? Wondering if anyone knows at 233, if it could be anything else besides a recurrence of cancer. Trying to get a 2nd opinion at Cedar Sinai now. My current plan with Hoag in Newport Beach did not approved a 2nd opinion at UCLA. Mayo Clinic wouldn't take me because I'm an HMO right now though changing to Medicare with supplement plan in January. Mayo Clinic would not even take me if I paid cash they said!!! Amazing. trying to juggle all of this with drs that won't do enough at early stage and not having the right insurance. Good luck to you and wish you a healthy year and next year.

REPLY
1 reply
thawk32 | @thawk32 | Dec 6, 2023
In reply to @stevm "Marie, I wish you luck as well. This is a challenging cancer. I was diagnosed at..." + (show)
@stevm

Marie,
I wish you luck as well. This is a challenging cancer. I was diagnosed at Stage 3. My biopsy pre surgery was inconclusive as they could not get a good sample. I agreed to have the tumor removed as the surgeon assured me that it was in a good spot for removal and he was 75% confident that it was non cancerous. The morning after surgery he stopped by quickly to say that the margins were clean. That left me feeling hopeful until 5 days later when I received the pathology report. I was shocked to learn that I was Stage 3. I had minimal symptoms leading up to my diagnosis. I very slight feeling on my left side that I attributed to a muscle pull. My genetics indicated KRAS as well. I'm being treated at Mass General Boston. As much as I'm not looking forward to taking the 5FU with radiation, I figured I'm all in at this point. I've been reassured that it won't be as bad as 12 cycles of Folfirinox. The Oxaliplatin is torture. They eliminated it for the last two cycles as my neuropathy had worsened. Hoping that it's not permanent. Again, all the best to you in your journey. Steve

Jump to this post

Steve,
Where in the Pancreas is your tumor that is a good spot?
Mine is in the body of the Pancreas and if I have surgery they will also move my spleen.

REPLY
1 reply
stevm | @stevm | Dec 6, 2023
In reply to @thawk32 "Steve, Where in the Pancreas is your tumor that is a good spot? Mine is in..." + (show)
@thawk32

Steve,
Where in the Pancreas is your tumor that is a good spot?
Mine is in the body of the Pancreas and if I have surgery they will also move my spleen.

Jump to this post

It was in the tail. I had a distal pancreatectomy and spleen removal. I had surgery prior to chemo and radiation.

REPLY
View MoreView Less
Please sign in or register to post a reply.