Pancreatic Cancer Stage IV: I need support

Hi Alex, welcome to Connect.
I'd like to introduce you to @SJG and @Ronmac who also have pancreatic cancer. You can also connect with them on this discussion https://connect.mayoclinic.org/discussion/i-have-just-been-diagnosed-with-pancreatic-cancer-1-12-inch-mass/. I'm also tagging @irvkay312 who has Islet Cell pancreatic cancer and @hopeful33250 who I'm sure will join me in welcoming you here on Connect.

What chemo regimen are you currently on? I'm glad it's working well at the moment.

Hi Alex. Although my cancer was classed as Islet Cell in 2009, its size was about 2.6 cm in near center of pancreas (Isles of Langerhorns) which make enzymes and hormones for your bodies operation. By November not much had changed, since Islet Cell is one of the slowest growing kinds; then at that time my last Octreotide Scan showed a mestasized growth of 2.6 cm. in the liver and two separate uptake areas (where growth could happen). The scan also showed Uptake (areas ripe for mestasized growth) in Spleen, GI and GU tracts. At that point my Oncologis changed my diagnosis from Islet Cell to Pancreatic Cancer. When I asked why, he said "it mestasized to the liver (which means its now in your blood) and having Uptake in the spleen, GI and GU tracts is considered to be in other area's." Also, your last blood panels indicated several changes and your cancer marker in your blood rose.. I hope this has helped understand some of the ways they note these things. If you face diahrea, tell your Oncologist, since it could be a symptom of change or as simple as taking an Immodium. Good Luck.

Irvkay312

@ut3cordova Hi Alex: I also want to welcome you to Mayo Connect. I know that you will feel supported as you communicate with the group, here. I have had three neuroendocrine tumors (a rare malignancy) in the duodenal bulb and have four cysts in the pancreas which are being tracked by MRIs. I wish you well in your treatment. As Irvkay312 mentioned some of the side effects of treatment can be solved rather easily, so I encourage you to keep in touch with your oncologist. They probably have suggestions for most side-effects. Please stay in touch with Mayo Connect and let us know how you are doing and how we can support you on your journey to improved health. Teresa

Approx 6 weeks ago, I was diagnosed with Pancreatic Cancer that had spread to the liver. Surgery is not an option at this time. Undergoing chemo with gemcitibine and Abraxane every other week. I have had 2 chemo treatments and so far no significant side effects. Would like to hear from anyone with Pancreatic Cancer.

I was diagnosed with Islet Cell Cancer (about mid pancreas) which was said to be responsible for hormone and enzyme secretion within your body. Basically, enzymes to help digest your food and stomach contents and hormones to have to do with blood sugar and diabetes. 7 years later the Islet Cell has mestasized to a 3.6 cm growth in the liver with 2 uptake spots there too (uptake I was told meant the area was ripe for tumor growth). Then the Spleen, GI and GU tracts all had uptakes to them. I had 28 radiation treatments to the pancreas. 2 cycles of Adriamyacin and Streptozocin, in which I was told heart or kidney damage could occur in as much as 5 years. That posed explicit changes to the doctor and why was followed with 12 cycles of Sutent and 3 cycles of Affinitor. Chemocare.com is an excellent site for chemo damage and interactions. The thing I was fortunate in following was my Liver Panel every 3 months and changes within it. Those were area's that I posed direct questions about these changes to see where I stood. The last type of treatment I had was 2 shots of Sandostatin; after which, I called it quits and told the doctor "I no longer could take the adverse affects of it. That placed me from Palliative Care to Hospice Care which I am presently in.

A couple of points my Oncologist made after the growth was seen in the Liver on an OctreoTide Scan was, "since it's in your liver, it's in your blood and when it's in your blood it's likely to mestasized elsewhere." Some other items to note, (1) Something else diet or lack to want to eat or drink, (2) and weight loss.

Some area's of concern can be American Cancer Society (Liver); ASCO (liver); Mayo Clinic (Liver cancer), etc. and Johns Hopkins all posed, "don't wait if your case is new and you seek treatment, or it may never come to pass as was with Steve Jobs.

Good Luck

irvkay312

Hi @jimde, welcome to Connect. I'm glad you've already met @irvkay312, a Connect mentor.
You'll notice that I moved your message to the discussion that @ut3cordova started on the same topic. Alex, I hope you'll return to connect with Jimde.

Jim you may also wish to connect with @SJG and @Ronmac. They've been talking about living with pancreatic cancer on this discussion https://connect.mayoclinic.org/discussion/i-have-just-been-diagnosed-with-pancreatic-cancer-1-12-inch-mass/

We look forward to getting to know more about you. Was the diagnosis you received 6 weeks ago the first that you heard you had cancer or is this a recurrence?

It is the 1st I heard I had cancer. As I was feeling great, it came as a complete surprise. It was discovered during imaging tests for kidney stones. The tumor is in the tail of the pancreas so I still feel great...even though it has spread to my liver.

That is why it has been said to be a silent killer. Far too often with pancreatic cancer, unless you become inquisitive about changes;it is often too late to do much of anything. I know my father who passed at 8? was always active, bowler, golfer and sought to enjoy life; yet one day playing golf with my brother he passed away. Pancreatic cancer, said the autopsy. Even though 20 years earlier he'd had bypass surgery of which our whole family was afflicted with somehow. Myself, insofar as my Islet Cell which my mestasizing to other organs was re-classified as Pancreatic Cancer. I always ate vegetables, fruits, healthy foods and stayed away from sweets. I never drank alcohol due to anti seizure medicines. It may just have been something in your system that turned the wrong way at the wrong time? Good Luck.

irvkay312

I know what you mean by surprise. I went to the doctor for what i thought an ulcer and after severl test i find i have stage IV pancreatic cancer. Im gitting treatment at University of chicago hospital im pretty sure the same two chemos once every other week as well. Im only 41 and i feel like i have aged 10 years since I was diagnosed in February. I have a two year old and some days i just cant keep up with him. The cancer has shrunk 7 pecent in the latest scan and the cancer markers in my blood continue to fall all great news for now anyway.

I am very glad to hear of the 7% reduction and that your blood
markers continue to fall. Trying to keep up with a 2 year old while battling cancer certainly presents you with a full plate. I admire your stamina...keep up the good work!