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.

@allisonsnow

I connect to almost everything you have said @saltis.. At one time or another have experienced it all especially the feeling of being tired of the fight but battling with that feeling is the stronger emotion of feeling blessed with the cancer, as I have expressed many times I am a better person now. So @ventibug I hope the replies and welcomes you have had and will continue to get supports the feelings of gratefulness for what you can still experience. If anything is "normal" during this time it is that you can feel Gods love at the same time you feel depressed for what you have lost. You can feel joy for the gifts you are still getting at the same time you feel sadness for what you have lost. Here you find compassion and understanding for whatever "stage" you are in. @saltis said it very well.

Allison

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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

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@saltis

Hello @ventibug
Hope your Samsung & you have a long lastning & satisfying relationship, ahead of you. I am an IPhone & IPad user & it is too late to start learning how to use an android gadget. I have a computer but don’t remember where I have parked it. My memory is a bit of mess and I have accepted my condition with difficulty, due to 23 years of chemo, cancer & other treatments. I am always such a positive and happy person but now I feel that I am lost in the deepest whole of depression that can be found on earth. I feel that my husband is very tired of being this great strenght, loving partner of mine. It is not easy with ups and downs in my different treatments, side effects and various reasons to be hospitalised, more often recently. Between us I am tired of being alive but sitting in this waiting rom before the final D”eath”day. I have being diagnosed 4 time with stage 4 cancer. I don’t know if it was thanks to my Sunny personality or my wonderful oncologists that I have survived this far. But as said before, it has become tiring just waiting. On the bright side, I Said hello to my new grandchild, a little boy for almost two weeks ago. Didn’t even believe to be able to meet my first grandchild, a very bright and beautiful girl who would be 4 years old quite soon. So you see life is full of surprisens even when we found ourselves at the bortom of darkest whole in the world. My aim is to find a comfortable and pleasant mind zone for my beloved husband, where he can relax and gather his strenght back.
I am so happy that you are a believer, your trust in God Will help you through this ordeal. Nobody understands your situation better than you, but please find a place in your mind that you can the reasons for being lucky. Mine are that I have a wonderful tired husband, a handsome son, two wonderful grandchildren, and still with my spread stage 4 cancer for the past 3,5 years, I have been enjoying most of my days. If I die now, you must know that while feeling the blue, I am the luckiest woman alive.
Take care beloved ventibug❣️

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@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.

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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.)

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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

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@hopeful33250

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

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It's a great concept. I remember vaguely reading about delivering "prodrugs" via a virus.

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@nogginquest

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.)

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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!

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@hopeful33250

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!

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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.

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@nogginquest

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.

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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.

Liked by nogginquest

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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.

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@nogginquest

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.

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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.

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@nogginquest

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.

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@nogginquest

I am so pleased that you have been accepted! You certainly worked hard at finding a clinical trial and I'm pleased for you.
I can understand all of your roller coaster of emotions. I wish you well and I'm looking forward to hearing from you as you progress through the clinical trial. Will you post again?

Liked by nogginquest

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@nogginquest,
So wonderful news & congratulations. Hope everything works up for the best. Send you an ocean of positive energi & love. Let us know, how it is going & take care.

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@testlady

Six years and counting! I walk around with a smile and a positive attitude only to know that the true me is encircled by a fog that will not lift. I see a psychologist weekly, but it does not lift the fog of inevitability. I am afraid.

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It's very hard, @testlady I have to work on myself too. There is hope for me of no more recurrences and I am 72 so I can attain a philosophical attitude but I know what you mean. May the sun shine through the fog. You are not alone.

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@nogginquest

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.

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Sounds as if you did part of your dream. And Stephen King's house!

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@colleenyoung

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.

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My sister and two sets of good friends live within 2 hours of Baltimore. I live half way across the country. As of now, it looks like I'll have a two week gap between treatments. I plan to go home and work, and travel to Baltimore for treatments.

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