Pancreatic Cancer Group: Introduce yourself and connect with others

@tomrennie thanks again for your response. No loss of appetite or unintentional weight loss, jaundice or back and abdominal pain. My A1c score this past December of an increase of 6.1 up from 5.2 (Sept. 2024) was my red flag, plus some of my blood lab reports made me suspicious. I have another lab test this Tuesday checking A1c and complete blood count, followed by an appointment with my primary Mayo physician. All I know is that if I am diagnosed with pancreatic cancer, I want to catch it before it spreads and I want to get involved with treatments ASAP. I am also interested in help/support groups in Phoenix that I can reach out to. It appears to me that you are doing well with a stage 4 diagnosis and I hope that continues.

@dryheataz i understand. When I was diagnosed in 8/22, I was stage 4, and it spread primarily to my liver. For me, the first symptoms were loss of appetite and weight, stomach gas and pain, and a lot of diarrhea. The unintentional loss of weight is a big one to look out for. Ok?

@larrystewart, I agree with @gamaryanne that the PET scan results are encouraging: "no active disease and no discernable pancreatic tumor!" I, too, call that good news.

Dealing with an ileostomy is an adjustment that's for sure. I think you might be inspired by this spotlight:
- Diving into life with an ostomy: Meet susanf8 https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/diving-into-life-with-an-ostomy-meet-susanbfoster/

Susan has had an ileostomy for over 20 years, and while it took time to get the "fit" right, once she did, things were better. You can connect with Susan and others living with an ostomy in this support group:
- Ostomy & J-Pouch Support Group https://connect.mayoclinic.org/group/ostomy/

I encourage to post about your challenges. The group is great at offering tips and solutions.

@tomrennie thanks for asking. I have reviewed the early symptoms of pancreatic cancer and have none of them. I do have several of the risk factors like age, overweight by a little, and consuming wine but in moderate quantities. Never a smoker or had pancreatitis, This is a cancer that scares the heck out of me because symptoms don't usually appear until the cancer has spread to other organs like the liver. I know someone who recently passed from pancreatic cancer, so I have become more sensitive.

@dryheataz Hi and welcome to Mayo Connect. Are you experiencing any other changes in your body that make you concerned that it's pancreatic cancer?

Wondering if my occasional watery eyes and blurry vision are a latent side effect of the Folfirinox - 12 cycles last year ending in December 2025 - or something else? I also had the Whipple (Pancreatic cancer) last June but I don't think this would be the cause. This symptom has just showed up within the last 2 months, I had my annual eye exam last December with no problems identified then. And it (not tears that might fall, the excess water seems like it’s internal rather than external, I can’t clear up my vision wiping my eyes or blinking hard) isn’t constant, some days my eyes/vision is totally normal, then I will suddenly have it again - I can hardly read a book some nights which I usually do before going to sleep. Can do this if I squint very hard, but this isn't good.
Even though the chemo was over a few months ago, I have experienced some other latent effects from it (little bumps on my palms and fingers that will pop up every so often, but these are not problematic). Thank you if anyone has any thoughts or experience with this.

I am 72 years old and I have been in the prediabetic range for about 20 years and have not yet crossed the type 2 threshold, and I have not been diagnosed with pancreatic cancer. My concern (and I am worried) is that I may have pancreatic cancer because I recently lost 10% of my body weight but my A1C west from 5.2 to 6.1 in 15 months! My fasting glucose test at the same time was 108 which is typical for my fbg. I am new to this group, and this is my first post. Anyone have a similar experience?

@pd65, welcome. You may be interested in the discussions where members are talking about gemcitabine+abraxane, like these ones:
- Who else has had Gem-Abraxane chemo regimen and for how long?
https://connect.mayoclinic.org/discussion/chemotherapy-regime/
- Any experiences with Gemcitabine + Abraxane as second line treatment?https://connect.mayoclinic.org/discussion/gemabrax-as-second-line-treatment/

How did the first treatment go? How are YOU doing?

@cstroop1

Hi. The surgery you are having is likely a distal pancreatectomy. I had a distal pancreatectomy/splenectomy in April 2023. Mine was not robotic. I was hospitalized for six days. Most of that with a spinal block for pain control. Recovery was challenging but I was back to work remotely in about a week after I was released from hospital. Since my surgery, I have had to eat smaller, more frequent meals but am lucky that a portion of my pancreas is still there so no need to have supplemental meds to assist with digestion.

I would guess they will take your spleen as well which will require you to have some additional vaccinations post surgery.

It took my scar quite awhile to heal. Frequent walking is really good to help you accelerate your recovery.

Being eligible for surgery is good news. A surprise I had is that the doc took several areas of my liver to be assessed during the surgery. If there had been spread beyond the lymph nodes nodes, they would not move forward with the procedure. Fortunately for me there wasn’t.

About 4 weeks after my surgery I started chemo (folfirinox).

It has been almost three years, but I’m happy to answer any other questions you have to the best of my recollection.

My surgery was not done at Mayo but you are in great hands at Mayo.

@joeseah, you might be interested in these related discussions:
- Anyone have preventative surgery for IPMN (not cancer)?https://connect.mayoclinic.org/discussion/i-am-looking-at-surgery-on-342025-i-am-in-my-70s-do-not-have-canc/
- Benign or Malignant IPMN? What to do next?https://connect.mayoclinic.org/discussion/six-non-invasive-ipmns/

See all: https://connect.mayoclinic.org/group/pancreatic-cancer/

Also:
- Life after pancreatectomy: Tyring to decide on surgery or not https://connect.mayoclinic.org/discussion/life-after-pancreatectomy-1/
See all https://connect.mayoclinic.org/group/pancreatic-cancer/

Have you decided to do surgery or not?