Pancreatic Cancer Group: Introduce yourself and connect with others

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?

@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.

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.

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.

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.

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.

Hello @treadmillann My wife has also had terrible reaction to the Creon, severe stomach pain and diarrhea. To make matters worse, the recommendation from the surgical staff was always the same, increase the Creon dosage. She lost over 20% of her body weight before we just decided to stop the Creon. She has improved marginally by using Imodium with the docs approval but still has intermittent diarrhea. At least the weight loss seems to have bottomed out for now. OTC papaya enzymes is the first possible alternative I've heard and will try them. How did you learn about digestive enzymes building food? I need to do more research.

How are you doing now? What is working for you?

PS my wife thinks that she can't take the Creon because it is a porcine derivative and she might be allergic since she's never eaten pork products.

@marvinjsturing, so good to hear from you. Like @drewgrebe I was thinking about you today. You mention that the goal of this radiation is palliative rather than curative. Have you been in touch with a palliative care team at Mayo Rochester? That may be something you want to look into while you're there and to have set up for when you return home
- Mayo's Palliative Care Specialty Group https://www.mayoclinic.org/departments-centers/general-internal-medicine/palliative-care-minnesota/overview

@kjrita, of course you can post the link to PanCan's educational webinars. I fixed the URL so that it goes to the page on their website. I think the link you provided was from an email you received, which didn't work for others.

@drewgrebe How is your fiancée doing? How many more chemo treatments left to go?

@drewgrebe I had radiation treatment 21 this morning. Four more to go. Mostly I am feeling good. A touch of nausea right after my treatment but it passes quickly. There must be a little bit of radiation burn to my lower esophagus because sometimes there is slight pain when I swallow food. The biggest issue is fatigue. But I can take naps whenever I want because I am not going anywhere except to my daily radiation treatments. I meet with my radiologist every Tuesday. This week I was told that they consider this to be palliative care. I have been contacted by Mayo about a clinical trial that is currently going on that I can apply to participate in. I need to find out more about before I sign up. Taking everything into consideration, I'm getting along pretty good!

How are you doing?