Pancreatic Cancer Group: Introduce yourself and connect with others

Yes, my wife was originally a candidate in the Johns Hopkins vaccine clinical trial but after researching further (and molecular analysis of her tumor), we opted out. She actually had the PALB2 mutation which allowed folfironox (5fu) to very effectively attack the tumor. Participation in the trial would not be necessary and wouldn't have furthered their vaccine research since they were targeting a different (more common) set of mutations.

My wife had the gold fiducials procedure in preparation for the radiation, SBRT. She tolerated the fiducials procedure well. The gold markers were used in her case because they weren't doing general radiation. The SBRT is targeted and causes much less collateral damage. Not every treatment center has the SBRT capability. Good luck with the treatments.

Hi all, I guess I should post an intro since I jumped in with other posts already.

My wife was diagnosed with stage 3 pancan in July 2019 shortly after her 61st birthday. We met with our local gastroenterologist who connected us with the local pancan surgeon as well as the pancan specialists at Johns Hopkins. The local surgeon's diagnosis was marginally resectable tumor in the body with close proximity or involvement of celiac trunk. This was confirmed by JHH team. The course of treatment was laid out as 6-8 folfironox cycles, followed by a JHH clinical trial of keytruda and a pancan vaccine, then SBRT (radiation), then Appleby procedure followed by second cycle of clinical trial then completion of folfironox for a total of 12 cycles.

We opted to get the folfironox treatments locally in Orlando and the rest we would travel to Baltimore. Due to hurricanes and holidays disrupting the chemo schedule she wound up having 9 folfironox cycles before heading back to JHH. This turned into a blessing in disguise because the molecular study of the tumor showed that the folfironox was very effective in treating tumors with PALB2 mutation and that the clinical trial wouldn't be recommended. She was able to proceed to SBRT and surgery.

The Appleby was performed on February 20 at JHH. Surgery took 6.5 hours and they removed 60% of the pancreas, left adrenal gland, gaul bladder, spleen, 23 lymph nodes and resected the celiac trunk. The surgical pathology came back 100 % negative. She wouldn't need anymore chemo cycles.

So that was the good news. Initial outcome is that she is cancer free. The first quarterly scan is scheduled for June, were not sure where this will happen considering the covid19 travel restrictions.

I have written elsewhere about how poorly her surgical recuperation has progressed. She is plagued by chronic diarrhea and stomach pain resulting in weight loss and malnutrition.

Today was day 25 - my last radiation treatment. For the past 5 weeks, they have been frying my internal workings with high powered X-rays. Now begins a 2-3 month period allowing the body to heal. Once the healing process is complete, they will do a scan to see how successful this treatment was.

@marvinjsturing
Congratulations, Marvin! Praying that this resting period will bring healing and hope. Healing is a process and you are a great example of persistence and faithfulness to the healing process.

Checking in.
@marvinjsturing how are you feeling post radiation?

@beachdog, any luck in finding a Creon alternative that works for your wife? How is she managing to get enough nutrition?

@sunshine041594, how is your husband doing?

@thally5299, how's your mom? She's finished chemo now, right? How are the side effects?

@colleenyoung my wife has gotten a lower dose Creon. 12k units instead of the 36k units. The capsules are smaller and she can swallow them. Previously was mixing the Creon with applesauce which was probably making the Creon ineffective since it's actually designed to slow release in the intestines not be immediately taken into the stomach. So far she can tolerate 1-2 12k capsules with each eating. The local gastroenterologist also prescribed a different enzyme, zenpep. Haven't filled the prescription yet since she's started using the Creon.

We also finally had a session with a dietician (why in the world it took the oncology staff 2 months to make the referral is a whole other story). The dietician was helpful with suggestions on supplementing to increase protein without using whey and pea powders which she also reacts to.

Hi Colleen, Thank you for asking. My mom has done quite a bit and is still on Gem/Abrax (almost done with this). Her issue is that she did Fulfirinox before her Whipple in Sept 2019, then started on it again after Whipple. Her CA-A 19 kept going up (nothing on scans) so changed to Gem/Abrax. Her CA-A 19 kept going up (nothing on CT or PET scans). Took her for second opinion...they recommended radiation on pancreas. We did that and now are finishing up her Gem/Abrax cycles. Her CA-A 19 is in the 2000s and nothing shows on MRI, CT Scan or PET scan. We'll see now end of May, she'll be done with this chemo and have another scan. God willing nothing shows and her tumor markers start going down. Overall, she's feeling better than ever, so that's a great thing. It's been a little over a year since her diagnosis and it's been a very difficult road, so the fact that she feels better is great news 🙂 One day at a time. Thank you!

@colleenyoung My wife brought me into ER Saturday night with nausea a and chills. The did several blood tests including a blood culture, gave me meds for the nausea and sent me home. Sunday after lunch the hospital called and said I had an E. coli blood infection. They told me I had to come back to be admitted the hospital. They ran numerous tests and can't find the source of the infection. They put in a tunnel cath this morning and are talking about giving me antibiotics daily for 2 weeks. If they can get everything arranged, I will be going home this afternoon

It's just not a smooth ride, is it?! I took my husband to our local ER Sunday night and he was transported to Mayo right away - blood loss and cultures indicated infections, which he also had while in the hospital three weeks ago for his Whipple procedure. Everything in recovery was going well until this episode. Eating fine after Whipple but it seemed tough to gain any weight and energy - maybe it was because the infections were still there, who knows! Hopefully he'll get back on track after this visit and not have another emergency. They are still not sure what caused the sudden bleeding but he'll remain in their care until they have some answers. Nothing appears to be leaking on scans. It sure is a drag not being there for him.