Pancreatic Cancer Group: Introduce yourself and connect with others

Hello @weezi and welcome to Mayo Connect. I'm also glad that you found this support group and I appreciate you sharing your experiences with everyone on this forum.

I certainly applaud you for being so proactive about your care. It really is important as you said, "...that we know our bodies and if you notice something unusual, call your PCP!!!" That is the best way to become our own patient advocate.

I am glad to hear that you are feeling good now. I understand that the side effects from digestive tract surgery can be ongoing. I've had three surgeries of the upper digestive tract, and it takes a lot of trial and error to find foods that trigger symptoms. It's not an easy task. Have you considered keeping a food, exercise journal to see if there are any food, drinks or activities that increase your symptoms?

I was able to meet with a hospital dietician and her suggestions worked well for me. I hope that you are able to find some more guidance on an eating plan that might help with some of these symptoms.

Have you asked about a referral to a dietician since your surgery?

@waltsocal ,

1: I'm getting Cisplatin on top of the G+A. Just had 1 year anniversary, 27th bi-weekly treatment. It's been much easier for me than 12 rounds of Folfirinox was over my 6 months pre-Whipple.

2 & 3: The oncs told me people generally develop resistance to the drugs or too much neuropathy or low blood counts after 6-9 months. I'm still holding up well. I get CA19-9 tested before chemo every 2 weeks, an abdominal MRI, chest CT, and Signatera blood test every 2 months or so. CA19-9 dropped rapidly on GAC, from almost 700 last year to low 30's (normal range!) about 2 months ago, but it has crept up to 53 as of last week. Last MRI was the first one to actually show shrinkage of tumors, by a tiny bit. The added cisplatin might be helping me out because of the ATM mutation, but I think the Abraxane is also playing a large role, since the platinum (oxaliplatin) in my Folfirinox didn't seem to do much.

4: I can't really define stable, but two oncologists have emphasized imaging more than anything else. I think one defined "stable" as no new tumors and no growth more than 10%. CA19-9 has been mostly under control, and Signatera continues to be negative, so that's all "stable disease" on their reports.

5: I never really got over the Folfirinox fatigue until I finished, but it did always get better a week after treatment. Was living on coffee. On GAC, many factors at play, but some changes in sleep situation, reducing work-related stress, improved health of other family members, have helped. One blood transfusion, a prescription for Ritalin, and more coffee have all helped.

Two docs are pushing me to reduce the Abraxane, which might reduce fatigue even more, along with reducing neuropathy and maybe regrowing some hair and eyebrows. I'm hesitant to drop any drugs from a recipe that seems to be working, until I can get into something better by way of a clinical trial.

You could well be around for a lot longer than a year, so keep making plans for the future! Seriously, if the G+A does its job, you could actually be feeling good much of this year. If it's not controlling the cancer (soon), ask if adding cisplatin would help. I believe the GA therapy is typically 3 weeks on and one week off. I'm not sure if my GAC is every other week because of the cisplatin or because of my travel requirements, but getting a two-week break every time definitely helps with recovery, so ask if that's an option for you as well.

And be a really aggressive advocate for yourself and a non-stop researcher for clinical trials. If you develop resistance or intolerance to chemo, you'll want the backup plan to already be hatched instead of starting from scratch. Some of the clinical trial drugs are even easier to tolerate than G+A, and possibly more effective (depending on patient/genetics/etc).

Thanks for the feedback on your treatment. I met with my oncologist today. I have a cancerous lesion on my spine that they will treat with radiation. Of course I have to have a biopsy first since the CT and MRI were not conclusive enough. Although they are sure that the radiation treatment(s) will wipe out the lesion on my T4 vertebral, they're pretty sure the cancer has gone to other areas of my body. (CA19 at 400 now).

So, I will be starting Gemcitabine+Abraxane in March. One treatment per week for 3 weeks and then a week off. And then start all over.

A few questions:
1. How bad are the side effects compared to Folfirinox? (which I had pre-whipple)
2. How long before the G+A was no longer effective?
3. Did they monitor this with CT and CA19 results?
4. What is your definition of "Stable"?
5. How debilitating was it for you - what helped you to overcome fatigue etc.

Thank you again for your feedback and insight.
The oncologist said that if I can tolerate the chemo, I may have "a year or so".....

Hell o everyone. I’ve been looking for group to join and happy I found this great site!

I count my blessings everyday that I reported white stool to my PCP who then ordered CT and a small cyst was found in the head of my pancreas.

Because my sister and grandfather had pancreatic cancer and an uncle with bile duct cancer, they followed me closely.
1 year after finding the 7 mm cyst an MRI was done and cyst was unchanged but was on main duct.
2 1/2 months later an EGD sono showed the cyst had grown to 10.1 mm.
On 5/13/2022 had a Whipple for suspicious main duct cyst which was found to have dysplasia!
I was fortunate to have to have a surgeon following me that averages 60 Whipples a year.
I tell everyone I can that we know our bodies and if you notice something unusual, call your PCP!!!
I’ll be 2 years post op and feel good except for some gas problems, abdomen cramps, with BM urgency but usually gone by late morning.
Good to hear what foods are better post Whipple. That was lacking by dieticians at hospital. There doesn’t seem to be a good recommendation.

Thank you so much for your response - it was extremely helpful and detailed !

Whew! So much all at once. That is daunting, I know. There are lots of people on this board with lots of expertise, and I hope some will chime in to share ideas as well.

I think the first big question is what your husband wants to do. He's the patient and needs to set the agenda. Once you all have conferred and figured that out, then you can proceed on the path you've identified. Since no surgery is recommended, chemo would likely be his weapon of choice. That would lead to questions about which set of medications to use (there are generally two standards of care, but a whole lot of variations within those) and what to expect with those, and you can discuss those with the MD.

In my case, I decided to fight my cancer. (FYI, I'm stage 4 pancreatic and inoperable due to blood vessel involvement.) My husband is totally supportive. He goes to all appointments and chemo infusions with me. We plan our questions in advance, and I'm usually the one asking them, but some are his questions as well. (Did that make sense? Ha.) So yes, your asking questions is totally appropriate and understandable, as long as your husband is OK with it.

Re palliative care, at my healthcare system, I was immediately referred to a palliative MD right after my diagnosis. BTW, palliative care and hospice are not necessarily the same thing. At my system, palliative handles side effects and symptom management. I can get fluid infusions, massage therapy, acupuncture, integrative med and dietitian consults, prescriptions for neuropathy and other issues, chaplain support, etc.--no direct cancer treatment, but a host of things to help manage the cancer and the treatment. Hospice would be appropriate when treatment is stopped, and the palliative MD is the one who would help set up hospice care if/when I decide to stop treatment. So depending on what your provider offers, I would definitely say yes to palliative care right now. If you get on their patient roll, then it's easier to get to them when you need them to manage symptoms and such.

There are tons of posts on the various chemo regimens and how to manage them, diet, comfort care, etc. You can search for topics and see what pops up. Hopefully others will offer ideas as well.

Hi , my husband of 51 years was diagnosed with cirrhosis of the liver , liver cancer ,and pancreatic cancer . He is a 75 yr, old diabetic with ischemic colitis and in good health until an an ischemic event brought him to the hospital with what we suspected was appendicitis. The MRI revealed much more. He was released after a week , we are walking about 3 miles a day again as was our habit and are seeing a second opinion surgeon who specializes in the pancreas today . My question . Surgery is out . We were told 18 months . Should we be seeking palliative treatments or chemo and immunoglobulin therapy as the first dr suggested . My sweet husband is super sensitive to everything (food, weather, taste, pain ) especially food . Are there questions we should ask this Dr or should I not refrain from the serious questions and just allow my husband to confer with the Dr. ?

Tumors should be tested to learn about your particular mutation(s) and to help guide treatment and also determine if you are eligible for any trials. You should also be given that information and afforded plenty of opportunities to ask questions and gain a better understanding of what it all means. That is standard practice. PanCAN.org has a lot of information on the importance of tumor testing and if you look around the website you may find a lot of very helpful information and good advice.

Learning that you have cancer can be so overwhelming at first. So, ask lots of questions and learn as much as possible. It takes time, but it's important. Every single cancer is unique in some way to the individual and the testing they do on "your" tumor is essential. Hugs!

“Tumor testing “. What’s tumor testing? My oncologist has spoken of it.

Ray,
I so feel your anxiety. 11/2021 I was diagnosed stage IV out of the blue. A few side aches sent me to the doctor.
I’m here and I am thriving! Am I on medical care? Yes. Am I still doing the things I love, yes-except not many big bold cabs!
Get to a pancreas center of excellence, get second opinions, then make a treatment choice. You can do this! And many good things are coming for even better treatments so we can begin looking at this as a chronic disease.
Be sure that your doctors order genetic testing and tumor testing upfront. This will help direct your treatments now and in the future. Lastly, stay healthy! Fresh air, good foods, some quiet time, and laughing!