Talking Frankly about Living with Advanced Cancer

@dc4444 I am a patient at Mayo Clinic in Jacksonville. I have been very impressed with all my treatments there.
They are fast efficient and treat the whole patient not just the disease.
I would get a second opinion from them for sure.
I wish you and your sister the best.
Jackie

Thanks. After my sister Anne's next CAT scan which comes after her 5th chemo treatment, we will be evaluating her next move. Possibly to the Mayo clinic. I'm still curious about alternative treatments that I have heard good things about.

In reply to @dc4444 - my wife and I are both patients at Jacksonville. We are very happy with her oncologist, although the one who initially treated her has left. My care has been limited to monitoring for barrett esophagus and gastrointestinal disease.
We know very little about pancreatic cancer, as my wife has stage 4 non small cell lung cancer...being treated with doublet of perjetta and herceptin (trial)...hers is a somewhat rare condition...they determined via a molecular study in 2016, that hers is a HER2 mutation in the lung...normally found in breast cancer patients. Although stage 4, she seems to be doing very well as long as she gets the infusions every 3 weeks...very little side effects, but they do closely monitor her heart.
Her infusions are administered locally with a cancer center here in South Carolina...annual followup with the oncologist in Jacksonville.
The care in Jacksonville has been excellent!

Thanks for the in sight!

As an update, I've had an internal bleed that was cauterized. Suspected bowel obstruction so had a nose tube and suction for 2 days, no obstruction .These 2 events happened in one hospital stay and 5 days of not eating, although I had fluids.Another bleed suspected but not identified, so taken off blood thinners.Increasing pain meds. Now have severe bloating and edema, but I'm home, so hoping things will be better. I'm treating bloating with gas-x and walking. Spend a lot of time like a beached whale on the couch, unable to sit well due to the abdominal bloat. If anyone has other treatment ideas, love to hear them. I'm seeing the writing on the wall and am taking things a day at a time. Thank you everyone for the support you've given through this website.

Here is an inspirational story about a 13-year survivor of neuroendocrine cancer and how music has helped her. Just click on the link and listen:

For all of us who post in this discussion about "Talking Frankly About Living with Advanced Cancer" I wanted to let you know about the following educational opportunity,

For those of you living and/or visiting in Florida on July 16, I wanted to let you know about a symposium for cancer patients and their families. Here is a link with more information about, "Family First." It is available to all cancer patients and their families to learn more about the impact of a cancer diagnosis and to let you know that you are not alone. To register, or get more information, just click on the link below.
https://connect.mayoclinic.org/event/climb-at-mayo-clinic-florida-session-ii-1/?date=2019-07-16

Hi. My 1 year cancerversary is this weekend. Started at Stage 3, moved to Stage 4 in December. Metastatic Melanoma, unknown primary, Wild-type (negative on mutations). Received my 1st clear PET scan this past June (Yeah!) after every 3 weeks of immunotherapy, chemo added in for 4 of those treatments, 3 surgeries and too many not clear scans. Live in Rochester, MN and have a great oncology team at Mayo. I have been looking for a support group that involves people living with advanced cancer. Maybe I have found it? Have not read through all the posts here, but I will. Wanted to say hi and happy to have found you all.

Hello @bdpp Welcome to Connect! It is great to have you here --- and I hope you find Connect as a great a community as so many of us have! For me it really helped break the isolation of caregiving for my wife, who fought brain cancer for 14+ years!

While not a nice situation for you, very nice that you are right in Rochester! We made our treks from NW Indiana, but like you found a truly fabulous oncology team! My wife's neuro-oncologist was a tremendous gift for her and our entrie family.

Wishing you continued strength, courage, and peace!

@bdpp May I add my welcome, too! We are glad you have found us at Mayo Connect. We are patients, family members and caregivers [sometimes all three!] who share our experiences, strength and support to one another. Wonderful that you had a clear PET scan in June after all that treatment. I am a melanoma survivor, surgery in 2008, and still have my checks every 6 months. Recently my PET scan was also clear. We hope that you will visit with us, and pull up a chair to the big cyber-table we have, grab a cup of coffee or tea, and enjoy our group.
Ginger