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Talking Frankly about Living with Advanced Cancer

Posted by Colleen Young, Connect Director @colleenyoung, Sep 1, 2017

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.

Maureen, Alumna Mentor | @alpaca | Sep 23, 2018
In reply to @nogginquest "I am doing well. My husband and I went in a 6000 mile driving trip to..." + (show)
@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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1 reply
Maureen, Alumna Mentor | @alpaca | Sep 23, 2018
In reply to @testlady "Six years and counting! I walk around with a smile and a positive attitude only to..." + (show)
@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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saltis | @saltis | Sep 23, 2018

@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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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 23, 2018
In reply to @nogginquest "I wanted to let you know that I'm officially part of a phase 2 clinical trial..." + (show)
@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?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 22, 2018
In reply to @nogginquest "I wanted to let you know that I'm officially part of a phase 2 clinical trial..." + (show)
@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.

Jump to this post

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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1 reply
nogginquest | @nogginquest | Sep 22, 2018

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.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 13, 2018
In reply to @nogginquest "I am doing well. My husband and I went in a 6000 mile driving trip to..." + (show)
@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.

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nogginquest | @nogginquest | Sep 13, 2018
In reply to @hopeful33250 "Hello @nogginquest I was noticing that it has been a while since we had a post..." + (show)
@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!

Jump to this post

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.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 12, 2018
In reply to @nogginquest "Well, that just sucks. I only got to enjoy remission for a few months. Last July..." + (show)
@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!

REPLY
1 reply
Maureen, Alumna Mentor | @alpaca | Jul 3, 2018
In reply to @hopeful33250 "Hello All: I recently saw this Mayo study that uses the Measles virus to deal with..." + (show)
@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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