Talking Frankly about Living with Advanced Cancer

Hi James, if you’re interested in making an appointment at the Phoenix Mayo Clinic campus, here is a link to their website to get you started. Don’t let the possibility of a waiting list deter you. That may not be the case.

Since you’d be coming from the Philippine Islands, there is an international travel department which can help you with arrangements for travel and lodging.
https://www.mayoclinic.org/departments-centers/international

And one more valuable service is the Concierge department for all the little details to make your trip and stay easier.
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services

I know this is a really stressful time with a lot of decisions to make. What do your kids think you should do? Would you be traveling alone?

@makatak47 Contact Mayo Clinic, and get their thoughts on wait time. Coming from the Philippines, there has to be a lead time to make arrangements, anyway.

Here is a link to the Mayo Clinic Care Network. It shows you a few different options within your landing area, that work with Mayo Clinic, including North Bay Healthcare near San Francisco [CA], Palomar Health near San Diego [CA], and Yuma Regional Medical Center [AZ]. I believe if you go to their websites you will gain a better understanding of their services offered, and contact information for getting an idea of lead times for your situation.

https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
To contact Mayo Clinic about an appointment [any campus] http://mayocl.in/1mtmR63
I hope this helps you out?
Ginger

What really helps me cope with stage 4 recurrence Pancreatic Cancer are my children and grandchildren. I live with my daughter and grandchildren since the birth of my oldest grandson (12), next grandson (10,) and 5 year old granddaughter. I am a former K-12 teacher and caring for them has brought me joy. Being around my daughter an MD internal medicine and geriatrics at UCLA has been very person to have close. I have been lucky since my 2017 diagnosis, NED for 2 plus years and now almost 3 years since recurrence. I presently am anxious and down in the dumps about a possible return to old standard chemo 5FU. The idea of going through the insertion of the port, losing my hair again and testing my resolve. Living with grand kids keeps me positive and feelings about cancer in check but when I'm alone the blues rolls in. I have none of the known genetic markers even though my father died of pancreatic stage 4 cancer in the 1980's. So treatment is limited. We have to just plug along and count our blessings and think about gratitude. Helping others has always helped most of all. Leigh

That's the thing staying Encouraged through it all. I look at it as being BLESSED to be a BLESSING to whoever needs it. I'm inspired by your COURAGE!!!!

You are both realistic and basically positive and we to be. Ask your doctor about a low dose antidepressant like Elavil. I do not not like to take these type drug but my oncologist insisted when my CA mets showed up and like you I worried about my family and self. It has helped and finding positive things to dwell on as well. Local plants and birds are a great focus for me. I often sit in the door of the garage and just enjoy nature, out of the sun but can feal the breeze. Keep up that head as you are a wonderful person and deserve every day. Enjoy them. Keep us informed. Brenda

OMG 6 mths into stage 4 MBC , and I'm starting to get that feeling also ... Like "but you look so good " "You dont LOOK like you have cancer " etc and family afraid to call , or choose not to hear the "cancer stuff " , as if I chose it , LOL !! So more and more when the phone rin gs , its a cancer appt reminder or similar unfun thing .. WAY too much time to sit and look at that calender , since forced to retire without warning , and I hate that . I feel like a healthy person with stage 4 MBC . SO lucky in most all health areas , so fortunate all my life with that til now ..Dont smoke , or drink , pretty good at eating my veggies , grow organically , etc etc .. just this wiley virus foe ! Instead of support or encouragement it feels like bewilderment .. Started painting rocks w
red hearts and leaving them all over , in trees , parking lots , gardens , mailboxes.. Quilting some for Meals on Wheels gift shop nearby .. PET scan tomorrow has me worried , but it is what it is ... Wish me luck !

I am living with Stage4 cancer. I was negligent about keeping up to date with colonoscopies. Ended up with a colon surgery in February of 2017. Surgeon felt he had gotten it all. In NOVEMBER 2020 I had balance issues and other neurologicalsymptoms. December 7 2020 I had brain surgery inRochester. Quite large cancerous growth (2.5 cm x 60cm) removed from right temporal lobe. Stayed at St. Mary's for 2 or three nights. Started chemo in January. Chemo interrupted couple weeks later by a case of covid. Symptoms mild. I have since had 2 Covid vaccinations and two boosters. Have had two or three Gamma knife treatments and one course of whole brain
radiation. Three weeks purchased a recumbent adult tricycle. Physical Therapist recommended high back seat for comfort and control. Good for both strength and limbering up knees and rest of legs
All for now Gary

high back

Welcome, Gary! Am I right in assuming that the tumor found in the brain was metastatic colon cancer?
Dealing with cancer treatments during the pandemic added new challenges. I'm sure those were compounded by also catching COVID. I'm glad your symptoms were manageable.

I'd love to see a picture of the bike. It sounds amazing. How are you liking it? Does it inspire you to use it regularly and faithfully?

Any and all comments are welcome because any advise will be helpful at this point! My son, who is 53, has been diagnosed with stage IV metastatic pancreatic cancer. Here is my dilemma he has lived with a woman for four years but never married her and really had an aversion to it considering his last history of two breakups. When he found out about his diagnosis they got married! Now given he has chemo brain all the time he has turned his health decisions over to this woman and she and I do not get along at all! All that aside I feel like they aren’t advocating for his cure but putting band aids on his cancer with chemotherapy! I realize Chemo is a necessary evil for metastatic cancer but I think there are other options with trials that several organizations can help you with. But she just ignores anything I say and I will message her with articles that could be critical to his care. Overall if she were a hospice nurse I would fire her for sure. How do I make him understand this is his life he’s toying with and he has to become proactive. He’s really sick from the chemo and seems he’s in pain a lot even with a 25mg Fentanyl patch and hydrocodone (?) in between. I text her asking questions and she totally ignores anything I ask or say. This is my son and only child and I need some help in dealing with this woman! HELP!

@baboinwv, my heart goes out to you. Families can be challenging, especially during a health crisis.

Your son has stage IV metastatic pancreatic cancer. It is unlikely that a cure is possible (sorry, I know that is hard to hear.) Putting energy into "advocating for his cure" may not be where your son wishes to expend his energy. His focus now is on quality of life and his oncology and palliative care team are focusing on comfort care.

While you and your son's partner may not get along, keep in mind that you share a man that you both love very dearly. It pains both of you to see him suffer. Might you bridge your differences by talking to her about the love you share and to talk about the goals of treatment for your son, i.e., comfort care? Does he have a palliative care team?

Another thought is to talk with a palliative social worker or an oncology social worker. They can offer support to family members as well as patients. They are there for you. Here is more information about oncology social workers.
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Courage and peace to you.