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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.

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?

REPLY
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
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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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
nogginquest | @nogginquest | Sep 24, 2018
In reply to @colleenyoung "Congratulations, @nogginquest. How far do you have to travel to Johns Hopkins? Will you move there..." + (show)
@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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nogginquest | @nogginquest | Sep 24, 2018
In reply to @alpaca "Sounds as if you did part of your dream. And Stephen King's house!" + (show)
@alpaca

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

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I did! My retirement dream is to hike the Appalachian Trail, but with the recurrence and uncertainty I'm not sure that will happen.
So my husband too me to the end (or beginning depending on how you view it) and we hike part of my dream. Of course, Stephen King's house was just an hour or so away.

I'm not looking to travel the world before I become too sick. I'm looking to travel my world of interests.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 24, 2018
In reply to @nogginquest "I did! My retirement dream is to hike the Appalachian Trail, but with the recurrence and..." + (show)
@nogginquest

I did! My retirement dream is to hike the Appalachian Trail, but with the recurrence and uncertainty I'm not sure that will happen.
So my husband too me to the end (or beginning depending on how you view it) and we hike part of my dream. Of course, Stephen King's house was just an hour or so away.

I'm not looking to travel the world before I become too sick. I'm looking to travel my world of interests.

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What a great plan, @nogginquest! Wishing you many days of traveling your interests😊

REPLY
nogginquest | @nogginquest | Oct 5, 2018
In reply to @saltis "@nogginquest, So wonderful news & congratulations. Hope everything works up for the best. Send you an..." + (show)
@saltis

@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.

Jump to this post

@saltis
I finished the first week of treatment and the first week of recovery, and I feel like I've been hit by a truck.
Fever almost daily, achiness, headaches, and fatigue are my new normals right now. I haven't lost any weight, but my appetite is near 0. I am forcing myself to eat.

The worst thing is that chocolate taste yucky. I'm so sad about this taste change.

So far I'm experiencing all the normal side effects, minus several others. So I'm grateful for that. Plus, I'm still able to work part-time.

Hopefully the treatments will get easier as time goes by?

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 5, 2018
In reply to @nogginquest "@saltis I finished the first week of treatment and the first week of recovery, and I..." + (show)
@nogginquest

@saltis
I finished the first week of treatment and the first week of recovery, and I feel like I've been hit by a truck.
Fever almost daily, achiness, headaches, and fatigue are my new normals right now. I haven't lost any weight, but my appetite is near 0. I am forcing myself to eat.

The worst thing is that chocolate taste yucky. I'm so sad about this taste change.

So far I'm experiencing all the normal side effects, minus several others. So I'm grateful for that. Plus, I'm still able to work part-time.

Hopefully the treatments will get easier as time goes by?

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Hello @nogginquest

Good to hear from you. Thanks for the update. I'm sorry to hear of the side effects that you've experienced, but I hope that you will benefit from the treatment after it is completed. How frequently do you have the treatments?

REPLY
1 reply
nogginquest | @nogginquest | Oct 5, 2018
In reply to @hopeful33250 "Hello @nogginquest Good to hear from you. Thanks for the update. I'm sorry to hear of..." + (show)
@hopeful33250

Hello @nogginquest

Good to hear from you. Thanks for the update. I'm sorry to hear of the side effects that you've experienced, but I hope that you will benefit from the treatment after it is completed. How frequently do you have the treatments?

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@hopeful33250
I have to travel to Johns Hopkins every three weeks. The schedule of treatment meds is really random at times. It almost seems like the doc is trying to trick the cancer into submission.

Some weeks I will receive the two immunotherapy drugs, chemo, listeria, and the GVAX. Other weeks it's just one immunotherapy, chemo, listeria, and GVAX. Then another week they may leave out the listeria but include both immunotherapy drugs without the chemo.

I don't care what they do as long as it does something.

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