Talking Frankly about Living with Advanced Cancer

Thank you for your words of encouragement. Being close to Mayo is helpful for sure, but stay tuned for the conversations around shoveling snow to get to those early morning appointments. 😉

Thanks Scott. Yes, I think I may have found a healthier place to socialize and voice frustrations... and help others.

Hello @bdpp

I would like to add my "welcome" as well. Mayo Connect is a supportive, caring community and I think you will enjoy the posts and interactions. It is wonderful that you live close to Mayo and are able to get your treatment there. Congratulations on your clear PET scan in June. I'm wishing you many more!

I have had three surgeries for neuroendocrine tumors (carcinoid type) which is a rare form of malignancy. When I found Mayo Connect in 2016 I was facing my third surgery and found others who could share with me so that I did not feel so alone. I hope you find the same source of encouragement that I did.

I look forward to getting to know you better.

Hi @bdpp,

I’m so happy to see that you’ve joined Connect! You’ve come to the right place to talk with members who have similar health experiences – more importantly, to get support from people who understand what you are going through.

I encourage you to go through the discussions listed below, where you’ll meet @jenmae @meg4434 @lynnkay1956 @0716 @texas7777 @twinskl, who’ve shared their experiences as well.
– Stage 4 Malignant Melanoma internal https://connect.mayoclinic.org/discussion/stage-4-malignant-melanoma-internal/
– Melanoma: genetics and recurrence https://connect.mayoclinic.org/discussion/melanoma-1/

@bdpp, it’s great to hear about your 1st clear PET scan – looking forward to getting to know more about you.

@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

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!

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.

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

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:

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.