1. < Pancreatic Cancer
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Negative Turn in a Long Journey

Posted by wpprescott @wpprescott, Jul 7 3:36pm

I was diagnosed with PC in March 2023 just after my 60th birthday, and have frequently checked this forum, read most of the posts and responses here, and have taken great comfort and learned a lot from everyone's input. I am at an important crossroads in my treatment, however, and would appreciate any thoughts, advice and input you all may have. I am being treated at Smilow Cancer Hospital at Yale.

I had a small (1.9 cm) tumor in the head of my pancreas that restricted my bile duct and was also wrapped around the portal vein. I had 8 rounds of Folfirinox, the tumor shrunk away from the vein, and I was on the table for Whipple surgery on 9/25/23.

At the start of surgery, 5 small malignant lesions were found on my liver (even though nothing was ever seen on scans) and surgery was aborted. I started FFOX again and sought second opinions at UCLA, Mayo Clinic, and Frodetert/MCW which provided a lot of motivation for me to push on towards making surgery possible again. After 14 more rounds of FFOX (22 total) I was back on the table one day short of a year later on 9/24/24 for Whipple. This time it was a success. Eight hours of Whipple followed by 4 hours of portal vein reconstruction. I recovered very quickly (only 4 days in the hospital) and within 2 months was back to “normal” with only a few minor digestive issues to deal with.

My post-surgery pathology was as follows: Tumor: 1.5 cm, Grade G2, invades retroperitoneal soft tissue and portal vein. Perineural invasion present. Involves vascular bed/groove (corresponding to superior mesenteric vein/portal vein). All margins uninvolved by invasive carcinoma and high-grade intraepithelial neoplasia. 24 lymph nodes examined; 1 involved. Staging: ypT1c N1, at least Stage IIB. Tumor testing showed I have the KRAS G12D mutation.

My “secret weapon” throughout all this has been my physical health. I was a competitive cyclist and runner for over 40 years and I had very mild side effects during the 22 rounds of chemo; always ECOG=0. Throughout the last 2+ years I have continued to ride my bike, walk, jog, swim and do the occasional weight workout or yoga, on average about 10-15 hrs./week.

As you can probably guess, things have taken a negative turn recently. My first two sets of post-surgery check-up scans were NED but a May CT scan showed (and a PET scan confirmed) suspicious areas–soft tissue attenuation around the celiac/hepatic arteries, thickening of the left adrenal gland, an enlarged lymph node adjacent to the superior mesenteric vein, and a small lump in the wall of my abdomen. The lump appeared 2-3 months after surgery and is right at the incision where one of my abdominal drains exited. I had it checked out back in January and it was deemed scar tissue. I am having it biopsied tomorrow so at least I’ll know if that's the case.

So finally to ask my question(s). Where do I go from here? My options at Yale are a drug trial or back to chemo: either FFOX or Gem-Nab. I know what living for Folfirinox is like but also know the side effects of Gem-Nab might be even more tolerable. My oncologist said normally she would recommend Gem-Nab but since I haven’t had treatment for over a year (last round of FFOX was May 2024) that it’s “up to me”.

There is a KRAS G12D drug trial at Yale (ASP 3082) that I hoped to get into but there’s no space right now. I am still waiting to hear if Yale has other KRAS trials available. I have a list of other trial options at MSK and Dana-Farber since both locations are relatively close by. I would be willing to travel even farther afield for a trial if I could manage it.

Thanks for taking the time to read my story and for any thoughts, personal experiences or other things you have to share.

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

Profile picture for gamaryanne
gamaryanne | @gamaryanne | Sep 4 7:02am
In reply to @wpprescott "@rockie66 Things are going OK with the trial so far, but the irony (as I noted..." + (show)
Profile picture for wpprescott @wpprescott

@rockie66 Things are going OK with the trial so far, but the irony (as I noted earlier) is that my side effects and overall quality of life are worse than they were when I was grinding through 22 rounds of FFOX! Never a dull moment...

The negatives so far are that I continue to struggle with weight loss and digestion issues due to lack of appetite and fatigue, as well as a very dry mouth and lips. I did struggle with mucousitis at times when I was on FFOX so the latter side effect isn't that surprising. For appetite stimulation I have tried prochlorperazine (Compazine) and olanzapine (Zyprexa). I have my second long day of testing tomorrow and have been told there are still "other things" I can try that may help stimulate my appetite, including cannabis. On that note, does anyone have positive experiences with same (synthetic or edibles)? I can count on one hand the number of times I smoked weed in HS/college (early '80s) and I never recall the "munchies" being a part of that experience.

The positives are that I am sleeping well, have a very responsive and supportive care team at Yale Trials, and the skin rash has been well-controlled so far with Minocycline and Triamcinolone cream. It really isn't that bad/visible except on my nose. It looks a lot like a bad sunburn. The rest of my face and head (which is shaved and bald) have very small red blemishes that come and go around my face. head and neck. I apply the cream 2-3 times a day and always before bed and when I wake up in the AM, everything is almost cleared up completely. I do know the accumulated effects of Cetuximab will probably make it worse, but it is better than I expected so far.

I don't have a CT scan until Sep 19th to check for progress with the trial, but the nodule under the skin of my abdomen which is known to be malignant seems to be getting smaller. Maybe it's just a form of confirmation bias, but I am hoping I'm correct!

I am looking to connect with anyone on the same or a similar trial if you or someone you know fits that bill. I have never been a Facebook user but I did sign up so I could monitor some of the KRAS forums (including the G12D group) and it hasn't provided a lot of new information or contacts with others in my trial so far.

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Thank you for posting. I was in the phase 1 trial. What dosage are you at?

I have the dry mouth and lips from Naliri. I sip on orange juice all day and brush my teeth every chance I get! Also using a good quality lip moisturizer/chap stick. Can’t stand to even look at any food that is dry. Applesauce with protein powder stirred in, and anything else liquid that I can hide protein powder is are my go tos.

Glad to hear they have found an antidote to the rash. That was one thing I was glad to leave behind .

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jymurawski | @jymurawski | Sep 5 10:10am

I was just told the chemo is no longer working and was discontinued. No clinical trials are available at Rush. Then silence. No options. No follow up. Possibly weeks left to live.
Trying to navigate through clinical trials in language and information I don’t have. Pancan has been looking but how does one pick the right trial? Doctors have washed their hands of me. Feeling so angry, scared, and sad.

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lvtexas | @lvtexas | Sep 5 10:41am
In reply to @wpprescott "Thank you everyone for exactly what I expected! Insightful, thoughtful, helpful and supportive comments and ideas...." + (show)
Profile picture for wpprescott @wpprescott

Thank you everyone for exactly what I expected! Insightful, thoughtful, helpful and supportive comments and ideas. And I second the kudos for @markymarkfl for the detailed drug/chemo thoughts. You are a gold mine of information and I have admired your input over the last couple years of following this forum, along with @mnewland99, @stageivsurvivor and others too numerous to mention.

A couple more details and thoughts and an update on my upcoming week. I forgot to mention that all along my PC journey I have been a CA 19-9 and CEA "non-producer". My CA 19-9 was 20 at its highest and is currently < 9. My CEA was 9.9 back at my diagnosis but dropped after I started chemo and has been in the 3-5 range for the most part since then. It did increase to 7.7 when I had my last check, which raised some concern with my oncologist. I have also had a lot of "funny" scans over time which have initially been a bit concerning only to be a blip on the screen and nothing major or consistent. I attribute that partly to my activity level--my body is always active and it seems like a lot of things that show up on scans are just inflammation or temporary but benign changes masquerading as something more sinister. As I often say "someone has to be 3 standard deviations away from the mean and it seems like that is always me!"

As I mentioned I have a biopsy of the lump on my abdomen tomorrow, I am having a CT scan Friday to check to check for changes since my "bad" scan on 5/28, and hope to hear more today about possible KRAS G12D (or pan-KRAS) trials at Yale. If the biopsy and scan confirm malignancy and there are no immediate trial option, I'm leaning towards trying Gem-Nab as opposed to more FFOX. I can always go back to FFOX if G-N doesn't work and I can also keep looking for a trial and stop chemo to start that. I meet with my oncologist a week from today and hopefully I'll have a clear plan then.

@gracect If you don't mind, I'm going to send you a DM to chat about your experiences with Yale vs. MSK. I'd love to learn more about the logistics/location of your husband's treatment at MSK.

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Careful with that assumption on the chemos. Sometimes, insurance covers one chemo cocktail until it stops working - so confirm you can go back if needed. Folfirinox is typically the more agressive chemo, but gem-N sometimes can give better response.

Let us know what your oncologist says. But, stay on chemo until you have another option.
Great you were on it without complications for so long.

Best in health.

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wpprescott | @wpprescott | Sep 6 7:29am
In reply to @gamaryanne "Thank you for posting. I was in the phase 1 trial. What dosage are you at?..." + (show)
Profile picture for gamaryanne @gamaryanne

Thank you for posting. I was in the phase 1 trial. What dosage are you at?

I have the dry mouth and lips from Naliri. I sip on orange juice all day and brush my teeth every chance I get! Also using a good quality lip moisturizer/chap stick. Can’t stand to even look at any food that is dry. Applesauce with protein powder stirred in, and anything else liquid that I can hide protein powder is are my go tos.

Glad to hear they have found an antidote to the rash. That was one thing I was glad to leave behind .

Jump to this post

@gamaryanne My QTX3034 dosage is 1200 mg (3x400 tablets) twice a day. I'm in the arm of the trial where that is the "best" dosage as determined in an earlier phase.

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gamaryanne | @gamaryanne | Sep 7 8:09am
In reply to @wpprescott "@gamaryanne My QTX3034 dosage is 1200 mg (3x400 tablets) twice a day. I'm in the arm..." + (show)
Profile picture for wpprescott @wpprescott

@gamaryanne My QTX3034 dosage is 1200 mg (3x400 tablets) twice a day. I'm in the arm of the trial where that is the "best" dosage as determined in an earlier phase.

Jump to this post

Interesting. Phase 1 trial got me up to 1200 mg once/day.

So glad to hear you are tolerating well and excited to hear of your next scans. Pls keep us all informed!

REPLY
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markymarkfl | @markymarkfl | Sep 7 7:43pm
In reply to @wpprescott "@rockie66 Things are going OK with the trial so far, but the irony (as I noted..." + (show)
Profile picture for wpprescott @wpprescott

@rockie66 Things are going OK with the trial so far, but the irony (as I noted earlier) is that my side effects and overall quality of life are worse than they were when I was grinding through 22 rounds of FFOX! Never a dull moment...

The negatives so far are that I continue to struggle with weight loss and digestion issues due to lack of appetite and fatigue, as well as a very dry mouth and lips. I did struggle with mucousitis at times when I was on FFOX so the latter side effect isn't that surprising. For appetite stimulation I have tried prochlorperazine (Compazine) and olanzapine (Zyprexa). I have my second long day of testing tomorrow and have been told there are still "other things" I can try that may help stimulate my appetite, including cannabis. On that note, does anyone have positive experiences with same (synthetic or edibles)? I can count on one hand the number of times I smoked weed in HS/college (early '80s) and I never recall the "munchies" being a part of that experience.

The positives are that I am sleeping well, have a very responsive and supportive care team at Yale Trials, and the skin rash has been well-controlled so far with Minocycline and Triamcinolone cream. It really isn't that bad/visible except on my nose. It looks a lot like a bad sunburn. The rest of my face and head (which is shaved and bald) have very small red blemishes that come and go around my face. head and neck. I apply the cream 2-3 times a day and always before bed and when I wake up in the AM, everything is almost cleared up completely. I do know the accumulated effects of Cetuximab will probably make it worse, but it is better than I expected so far.

I don't have a CT scan until Sep 19th to check for progress with the trial, but the nodule under the skin of my abdomen which is known to be malignant seems to be getting smaller. Maybe it's just a form of confirmation bias, but I am hoping I'm correct!

I am looking to connect with anyone on the same or a similar trial if you or someone you know fits that bill. I have never been a Facebook user but I did sign up so I could monitor some of the KRAS forums (including the G12D group) and it hasn't provided a lot of new information or contacts with others in my trial so far.

Jump to this post

@wpprescott ,

I just got into a Phase 1 trial called MOONRAY. It's a KRAS G12D inhibitor from Eli Lilly. Six pills by mouth each day. Some nausea and fatigue, but definitely tolerable after one week, with no mouth or skin issues.

I also continue to struggle with weight loss and digestion issues. My palliative ARNP has also recommended either prochlorperazine (Compazine) or olanzapine (Zyprexa), but not both together. I've avoided both because of the side effects I read about, but she said those are not common at lower doses. She also said Reglan (metaclopramide) can be take in conjunction with Olanzapine, but not with Compazine. Once I got my GI tract straightened out with Reglan last year, I stopped because of the potential side effects (and nasty taste), but the side effects are supposed to be mild with lighter dosing and limited time usage.

I've also struggled with extreme dry mouth, but only while sleeping. Everything seems to wake me up in the middle of the night. There are many causes, but anti-nausea meds are said to dry you out (reduce salivation), and that has scared me away from most of them. I've had some luck with OTC tablets called XyliMelts (from OraCoat) that you can put between gum and cheek tissue while sleeping. The same ARNP also recommended mouthwashes like Biotene (which I've already tried with little success), and an SLS-free toothpaste like Verve. (SLS is Sodium Laurel Sulfate, iirc). I haven't tried that yet. She also said you can make your own mouth rinse with about a quart of water, a tablespoon of baking soda, and a teaspoon of salt. I'll give that a shot this week.

ARPN said Olanzapine has also been shown to help with sleep as well as with appetite. Have you noticed any impact on drowsiness or sleep quality?

I can't do the medical marijuana route for various reasons, but I'm guessing you might recall the "cottonmouth" phenomenon from the 1980's. It may be more hindrance than help for you, but everyone is different. Wishing you the best, and hope you'll keep us updated.

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1 reply
Profile picture for gamaryanne
gamaryanne | @gamaryanne | Sep 8 7:09am

I might suggest looking at Healios. It’s available on Amazon. That has really helped with mouth issues and has internal healing properties as well.

Dietician recommended it to me.

REPLY
Profile picture for lvtexas
lvtexas | @lvtexas | Sep 8 7:27am
In reply to @markymarkfl "@wpprescott , I just got into a Phase 1 trial called MOONRAY. It's a KRAS G12D..." + (show)
Profile picture for markymarkfl @markymarkfl

@wpprescott ,

I just got into a Phase 1 trial called MOONRAY. It's a KRAS G12D inhibitor from Eli Lilly. Six pills by mouth each day. Some nausea and fatigue, but definitely tolerable after one week, with no mouth or skin issues.

I also continue to struggle with weight loss and digestion issues. My palliative ARNP has also recommended either prochlorperazine (Compazine) or olanzapine (Zyprexa), but not both together. I've avoided both because of the side effects I read about, but she said those are not common at lower doses. She also said Reglan (metaclopramide) can be take in conjunction with Olanzapine, but not with Compazine. Once I got my GI tract straightened out with Reglan last year, I stopped because of the potential side effects (and nasty taste), but the side effects are supposed to be mild with lighter dosing and limited time usage.

I've also struggled with extreme dry mouth, but only while sleeping. Everything seems to wake me up in the middle of the night. There are many causes, but anti-nausea meds are said to dry you out (reduce salivation), and that has scared me away from most of them. I've had some luck with OTC tablets called XyliMelts (from OraCoat) that you can put between gum and cheek tissue while sleeping. The same ARNP also recommended mouthwashes like Biotene (which I've already tried with little success), and an SLS-free toothpaste like Verve. (SLS is Sodium Laurel Sulfate, iirc). I haven't tried that yet. She also said you can make your own mouth rinse with about a quart of water, a tablespoon of baking soda, and a teaspoon of salt. I'll give that a shot this week.

ARPN said Olanzapine has also been shown to help with sleep as well as with appetite. Have you noticed any impact on drowsiness or sleep quality?

I can't do the medical marijuana route for various reasons, but I'm guessing you might recall the "cottonmouth" phenomenon from the 1980's. It may be more hindrance than help for you, but everyone is different. Wishing you the best, and hope you'll keep us updated.

Jump to this post

@markymarkfl Hello! Olanzapine does help with sleep, nausea and appetite. I think it made me extremely tired the next day - (take it only at night). But, I am anemic so that needed treated and has been now. Try and see how your body responds.

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wpprescott | @wpprescott | Sep 8 8:48am

@markymarkfl We seem to have a parallel existence! I looked at the Moonray trial but would have needed to travel to NYC or Boston and the Yale trial I am in made more sense. I also tried Compazine for nausea/loss of appetite but it constipated me and didn't seem to help. I switched to Zyprexa a couple weeks ago and it seems to have helped a bit, and I have no side effects from it and will continue to take it.

When I was being treated with Folfirinox for chemo I battled mucositis at times and discovered XyliMelts and they helped me greatly with keep my mouth moist at night. I have been using them off and on the past few weeks and they help greatly. The homemade mouth rinse you note also helped. I also use Biotene toothpaste and the rinse as needed.

Knock on wood but it seems like my skin rash is fading quite a bit as are my dry mouth issues. I'm hope the reason is because my body is adjusting to the Cetuximab and things will continue to improve but I know that's a bit counter intuitive but maybe I will buck the normal trend?

One other positive thing I forgot to mention is the nodule under the skin on my abdomen (that was biopsied and found to be malignant) seems to be shrinking. I won't know for sure until I have a CT scan on the 19th but manual measurement shows it has gone from 2.5 cm to 1.5 cm.

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2 replies
Profile picture for gracect
gracect | @gracect | Sep 9 6:40am
In reply to @wpprescott "@markymarkfl We seem to have a parallel existence! I looked at the Moonray trial but would..." + (show)
Profile picture for wpprescott @wpprescott

@markymarkfl We seem to have a parallel existence! I looked at the Moonray trial but would have needed to travel to NYC or Boston and the Yale trial I am in made more sense. I also tried Compazine for nausea/loss of appetite but it constipated me and didn't seem to help. I switched to Zyprexa a couple weeks ago and it seems to have helped a bit, and I have no side effects from it and will continue to take it.

When I was being treated with Folfirinox for chemo I battled mucositis at times and discovered XyliMelts and they helped me greatly with keep my mouth moist at night. I have been using them off and on the past few weeks and they help greatly. The homemade mouth rinse you note also helped. I also use Biotene toothpaste and the rinse as needed.

Knock on wood but it seems like my skin rash is fading quite a bit as are my dry mouth issues. I'm hope the reason is because my body is adjusting to the Cetuximab and things will continue to improve but I know that's a bit counter intuitive but maybe I will buck the normal trend?

One other positive thing I forgot to mention is the nodule under the skin on my abdomen (that was biopsied and found to be malignant) seems to be shrinking. I won't know for sure until I have a CT scan on the 19th but manual measurement shows it has gone from 2.5 cm to 1.5 cm.

Jump to this post

Very good news on the shrinkage!

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