Talking Frankly about Living with Advanced Cancer
Are you living with advanced cancer (sometimes referred to as stage 4 or metastatic cancer)?
This discussion is a safe space where you can connect with others to talk about the realities of living with limited time. It's not easy to find people who understand what it is like. For many reasons, you may not feel comfortable talking about your thoughts and emotions with friends or family. Perhaps you are alone. Even if you are surrounded by people who support you, you may experience intense loneliness.
Connect is a place where honest conversation can safely take place. You can speak frankly and be heard without judgement. I invite you to share your reality facing death and living now.
Interested in more discussions like this? Go to the Cancer Support Group.
Thank you, Allison. Your descriptions are helpful to me. I am not as articulate about emotions so sometimes you help me conceptualize my feelings that I could not understand in myself. Yes, I feel all those things at once. Cancer is exhausting in so many ways but I am still so grateful to be able to feel. It means I'm alive and human. Ventibug
@ventibug You sound like a wonderful person, so articulate and insightful. Don't know about the Apple devices though! I wish there was a magic wand to lift you up from the dark hole of depression but it seems that venting here is a good release for these cancer-related feelings.
I can identify with your feelings. I want to send you all my love from a storm battered, very wet New Zealand. And congratulations on your new grandson.
Well, that just sucks. I only got to enjoy remission for a few months. Last July I was diagnosed with stage IV pancreatic cancer (2" tumor in the pancreas & at least 18 in the liver). Within 8 months I was tumor free.
I underwent radiosurgery to the pancreas to kill off any hiding cells.
Last Friday I went in for a CT scan and learned they saw two new small spots in the liver. My oncologist ordered an MRI and biopsy to see what we're dealing with, and if the cancer has mutated, but I spent the week fighting the insurance company to pay for an MRI. The spots are so small and the CT scan fuzzy enough that the surgeon doesn't feel comfortable performing the biopsy, this the reason for the MRI and its clearer imags.
My oncologist had a peer to peer meeting with the insurance company this morning and was able to push the MRI through. I go in Friday morning and hopefully will have the biopsy soon after.
Sigh...I was really enjoying remission.
(BTW, I still feel great, and I'm still working 40 hour weeks. I told my husband, "I'm not ready to return to pain meds and debilitating exhaustion." I really hope the MRI shows nothing or the biopsy reveals no cancer.)
Hello All:
I recently saw this Mayo study that uses the Measles virus to deal with cancer. I thought about you, and I think you might find it interesting as well, Here is the link, https://connect.mayoclinic.org/newsfeed-post/measles-virus-as-a-cancer-fighter-2a2ee5/
Teresa
It's a great concept. I remember vaguely reading about delivering "prodrugs" via a virus.
Hello @nogginquest
I was noticing that it has been a while since we had a post from you. How are you doing? When you last posted (in another conversation group) you were going to be talking with Dana Farber at Mayo regarding a clinical trial. I hope that meeting went well. I'd love to hear from you!
I am doing well. My husband and I went in a 6000 mile driving trip to four different research hospitals. Dana Farber didn't pan out, but Johns Hopkins might work out instead.
I just finished a CT scan to see if I qualify for a clinical trial at Hopkins. If I do I will move there and live with my sister or my good friends for my husband's former boss.
BTW, while on my trip, I visited Mt Katahdin in Maine. It was my dream to hike the Appalachian Trail. I may not get to do that, but I did climb half of Mt Katahdin to Chimney Pond. Plus I got to see Stephen King's house.
Hope you all are doing well. I'll keep you posted on the clinical trial.
Hello @nogginquest
So nice to hear from you. What an adventure traveling 6,000 miles! I'm glad that you had some enjoyable moments in Maine with the mountains. That is a beautiful area.
Yes, please keep in touch and let me know if you are able to be part of the clinical trial at Hopkins. It sounds good that you have connections nearby and will not have to do a lot of commuting.
I wanted to let you know that I'm officially part of a phase 2 clinical trial at Johns Hopkins. It took 6000 miles of traveling to 4 different research hospitals to make it happen, but when I was selected everything moved very fast.
I go in next week for my first treatment. I will receive listeria, two immunotherapy drugs, GVAX Pancreas Vaccine, and a baby dose of chemo. We are hopeful that this treatment will show promise for metastatic pancreatic cancer.
I'm excited. I'm scared. I'm hopeful. I'm feeling all the emotions.
Congratulations, @nogginquest. How far do you have to travel to Johns Hopkins? Will you move there for the duration of the study? How many treatments over what period of time?
I can imagine you're experiencing the whole gamut of emotions. I for one will be interested in hearing about your journey. Please keep us posted.