Pancreatic Cancer Group: Introduce yourself and connect with others

Yes I can access the patient portal and I will look into that

@russelltturner I'm glad to hear that you can access the patient portal. After reading those reports, you can ask the doctor specific questions related to the results. You can also share with Connect if you feel comfortable doing so.

I was diagnosed with pancreatic cancer in November and am finishing chemo soon with a plan to do radiation next. This is my third type of cancer in 10 years and my fourth overall. This is the hardest one yet. I always had hope before but this time my treatment options are limited and it’s easy for me to get depressed and anxious. The good news is I have no pain thanks to a nerve blocking procedure they did at Mayo.

Hello @novak120 and welcome to Mayo Clinic Connect. Congratulations on nearing the end of your chemo. Wonderful news about not having pain. What procedure did you have done, if I may ask?

Hello @novak120 and welcome to Mayo Clinic Connect. Connect is a place where patients give and get support from others.

I am sorry to hear that you are dealing with cancer again. I am glad to hear that the nerve-blocking procedure has helped you. If you don't mind sharing more, what type of discomfort and/or pain were you having prior to the nerve block?

As I have had three surgeries for a rare type of cancer, carcinoid cancer, I can understand the tendency to get nervous and anxious. Dealing with cancer is often an uphill struggle. I am glad that you are being treated at Mayo.

If you don't mind sharing a bit more, what type of chemo has been used? Do you know how long the radiation treatment will be?

I would like to invite @marvinjsturing to this discussion. His pancreatic cancer treatment began over five years ago.

I look forward to hearing from you again. Will you post updates as you are able?

I would like to know more about the nerve-blocking treatment for pain. Like you, I have pancreatic cancer with constant stomach pain. I also attend Mayo, in Phoenix. I have finished chemo and radiation, and I’m waiting for Whipple surgery to be scheduled. I wish you all the best in your journey. Kathy

@novak120 It is just about 7 years ago that I was diagnosed with pancreatic cancer. After my Whipple, I had 6 months of chemo (gemcitabine also known as gemzar). Because of a very rare reaction to the chemo, I lost most of my kidney function. After 5 years of scans that showed no evidence of cancer, I was able to get on the kidney transplant list at 2 transplant centers. Just over a year ago, we moved and I had to find a new oncologist. He wanted his own PET scan. That scan found that my cancer had returned. I was immediately taken off both transplant lists. I, too, have very limited options for treatment. Typical treatment is radiation and chemo. Doctors were concerned that chemo would further damage my kidneys so I did 25 rounds of radiation a year ago. Since that time, I have been going to Mayo every 3 months for a PET/MRI. So far, these scans have shown that my cancer is not growing or spreading. Because the cancer is not growing, there has been no treatment. If the cancer begins to grow I will need to start chemo. Because of lack of kidney function, I will have to have dialysis after every chemo treatment. It has to be really hard to be going through cancer again for the 4th time. I fully understand the struggles you have with depression and anxiety. For me, I thank God for and enjoy every day of life that he gives me. Take it one day at a time and never ever give up.

Thank you for the welcome. Several of you had questions about my pain and the procedure that alleviated it....I had a Celiac Plexus Block done at the Mayo Clinic in Rochester. My pain was in my lower left abdomen, sometimes radiating to my back, and usually at a level of 3 but could get up to 6 or 7, depending on what or how much I ate, I suppose. My palliative doctor recommended I get the block done. It was a simple, short procedure, for which I was awake but relaxed. It reduced my pain level to 0 immediately and has lasted five months now.

Thank you for the information about the nerve block. It sounds very successful.

Hi I have a recurrence of pancreatic cancer in same bed as the first tumor (had a distal pancrectomy and splenectomy) in jan 2018. Then almost 3 years NED and cancer is in my lungs in small nodules. Lung ablations worked great once nodules were large enough but now too many so starting a trial on 15th of June. Ive also just had the shorter 5 days of radiation treatment. Im wondering if anyone else is in a similar situation? Im also wondering about how long I have so I can make decisions and I know no-one can truly answer but a ball park number. So far it's been a year and slow growing, well differentiated cells. I have none of the known genes but my father died of pancreatic and one second cousin I never knew. Thanks for any feedback. My first name is Leigh