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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.

ld57feast | @ld57feast | Oct 27, 2018
In reply to @nogginquest "@hopeful33250 I have to travel to Johns Hopkins every three weeks. The schedule of treatment meds..." + (show)
@nogginquest

@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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You lifted me up this morning Thank you!!

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ld57feast | @ld57feast | Oct 27, 2018

It sometimes is so overwhelming. It hits me hard some days and other days I am in a happy space. The people around me see some of the pain and suffering but most times I try to stay positive. I have lived longer than my dr.s prediction, which is cool. I really love life, the people around me and my pets. It is all the adapting to new ailments that is harder to deal with. Metastasized into my lungs and now is straining my heart. There is no medical treatments for my cancer so I have gone holistic. Comfortable and happy for another glorious, beautiful day god has made for us all Amen

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 20, 2018

Hello to All Living with Advanced Cancer

Mayo Clinic will be presenting a webinar this Monday, Oct. 29, regarding early detection of pancreatic cancer. If you are interested in viewing and/or participating, here is the link for more information, https://connect.mayoclinic.org/webinar/video-qa-about-the-early-detection-of-pancreatic-cancer/

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 5, 2018
In reply to @nogginquest "@hopeful33250 I have to travel to Johns Hopkins every three weeks. The schedule of treatment meds..." + (show)
@nogginquest

@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.

Jump to this post

Yes, I am sure you are looking forward to some good results, @nogginquest Wishing you all the best!

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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?

Jump to this post

@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.

REPLY
4 replies
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?

Jump to this post

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 @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 | 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😊

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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!

Jump to this post

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.

REPLY
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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