1. < Cancer
Moderator

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
Ginger, Volunteer Mentor | @gingerw | Aug 13, 2022
In reply to @clayesq "hello, all... New to the group. I have been living with melanoma since 2014, and last..." + (show)
@clayesq

hello, all...
New to the group. I have been living with melanoma since 2014, and last year progressed to Stage IV. Currently NED, with clean scans since July '21, but perpetually scared and uncertain as to what I am supposed to be doing to live with this disease... so, hello! 🙂

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@clayesq Welcome to Mayo Clinic Connect. I see you joined us a while ago and this is your first post. Being scared and uncertain is an awkward way to live each day, isn't it?

Like many of us here, I am a cancer patient. Malignant melanoma on my right forearm was removed 12/31/2008. In addition, I have had many squamous cell carcinomas surgically removed by MOHS procedures. Beyond that, I am a blood cancer patient currently on chemo, and a dialysis warrior with failing kidneys.

You ask what you are supposed to be doing to live with melanoma. My experience and thoughts: get your full body skin checks every six months or more often if you notice something. Wear sunscreen everyday. Minimize your risks. Live your life looking forward, planning your next great adventure. If you are still working [I noticed the JD in your profile], make it meaningful. Eat healthy but leave room for a binge. Exercise in moderation. Be grateful for the little things, and profoundly thankful for the big things. Smile, and project that to others. Make a difference.

What will you do with today?
Ginger

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 10, 2022
In reply to @ta8 "Vivir con cáncer metástasis es una situación difícil para las familias.Intento llevarlo lo mejor posible. Pero..." + (show)
@ta8

Vivir con cáncer metástasis es una situación difícil para las familias.Intento llevarlo lo mejor posible. Pero me asusta que. mi hija no se sienta tan asustada. Comparto mi sensación de impotencia ante lo que pasa

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@ta8, how are you doing? You mention that you are concerned that she doesn't appear to be scared about your diagnosis. May I ask how old your daughter is? Is she your main caregiver?

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lale2872 | @lale2872 | Oct 2, 2022

Hola soy nuevo tengo 50 años y tengo cáncer de próstata avanzado con Gleason (4+5)9, estoy muy preocupado por saber que me espera

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 2, 2022
In reply to @lale2872 "Hola soy nuevo tengo 50 años y tengo cáncer de próstata avanzado con Gleason (4+5)9, estoy..." + (show)
@lale2872

Hola soy nuevo tengo 50 años y tengo cáncer de próstata avanzado con Gleason (4+5)9, estoy muy preocupado por saber que me espera

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@lale2872 Welcome to Mayo Clinic Connect.

I am including a link here to go to a Prostrate Cancer discussion on getting help. When were you diagnosed with your prostrate cancer?
https://connect.mayoclinic.org/discussion/prostate-cancer-getting-help-questions-answered/
Ginger

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2 replies
lale2872 | @lale2872 | Oct 2, 2022
In reply to @gingerw "@lale2872 Welcome to Mayo Clinic Connect. I am including a link here to go to a..." + (show)
@gingerw

@lale2872 Welcome to Mayo Clinic Connect.

I am including a link here to go to a Prostrate Cancer discussion on getting help. When were you diagnosed with your prostrate cancer?
https://connect.mayoclinic.org/discussion/prostate-cancer-getting-help-questions-answered/
Ginger

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Buenas noches , el diagnóstico fue en agosto de este año, me mandaron hacer una gramagrafia osea , la cual indica que no tengo metastasis en los huesos.

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lale2872 | @lale2872 | Oct 2, 2022
In reply to @gingerw "@lale2872 Welcome to Mayo Clinic Connect. I am including a link here to go to a..." + (show)
@gingerw

@lale2872 Welcome to Mayo Clinic Connect.

I am including a link here to go to a Prostrate Cancer discussion on getting help. When were you diagnosed with your prostrate cancer?
https://connect.mayoclinic.org/discussion/prostate-cancer-getting-help-questions-answered/
Ginger

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Hola buenas noches, en agosto de este año, me mandaron hacer una gramagrafia osea, la cual indica que no tengo metastasis.

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cruiser2019 | @cruiser2019 | Oct 6, 2022
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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Hello
I wanted check on you see that how are you doing.

Can you give update on your condition?
Thanks

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birdman518 | @birdman518 | Jun 18, 2023
In reply to @fmh1 "Colleen, thanks for serving as moderator! I have an idea to share with you and seek..." + (show)
@fmh1

Colleen, thanks for serving as moderator! I have an idea to share with you and seek your ideas as well.

At 62, I am living with stage 4 prostate cancer, currently on hormone therapy (Eligard every three months), and am an insulin-dependent diabetic (30 years) with advanced coronary disease (super high CAC), but you'd never know it to look at me and my 40+ hour work schedule! I was treated four years ago with combination therapy, external beam + brachytherapy, but it did not stop the cancer progression. I can handle the side effects of hormone therapy except for one, the increased blood sugar, which is dramatically higher. Because of this, I am actively seeking second opinions from Mayo and MD Anderson regarding alternatives to hormone therapy after chemo ( I had 6 treatments of taxotere, ending on 7/11/19).

In a nutshell, i view prostate cancer like this: metastatic prostate cancer is like a car driving around with living people/cancer cells, driving away from the prostate and dropping off the cancer cells in various locations (bones, liver, kidneys) as it travels around your body on the bloodstream highway. However, for men, the car needs gas, and that gas is testosterone; by cutting off the gas supply, or minimizing its fuel, it cannot travel as far or as fast throughout the body. While the car is the vehicle that carries the cancer cells all over the body, the cancer cells/passengers themselves, per the work of Dr. Thomas Seyfried, Cancer As A Metabolic Disease, cannot survive without glucose/sugar and glutamine in the blood. Dr. Seyfried's simplified theory is to cut off the food supply --- glucose and glutamine --- to the cancer cells, and over time they cannot survive or thrives, regardless of whether or not the car still has fuel/testosterone to carry them around the body. They will simply die off over time without glucose/glutamine. Admittedly, Dr. Seyfried's theory is still under clinical investigation, but it holds great promise for cancer patients.

Here is the dilemma for insulin-dependent diabetics on hormone therapy: while the drug drops testosterone/fuel for the spread of cancer to nearly zero, it dramatically increases blood sugar, the fuel for the cancer cells that are still alive, food for metabolism/replication. What is the potential implication of this? Existing cancer cells will get more than enough fuel to survive and thrive, though spreading more slowly without testosterone. My cancer doctor's advice was this: consult with your endocrinologist and adjust your insulin. I did that, and my insulin requirements increased to an insanely high amount to get my blood sugar even close to normal (80-110).

This is why I am seeking a second opinion from either Mayo or MD Anderson. Your thoughts appreciated as well!

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@fmh1 I just saw your post. I have posted elsewhere here about my melanoma story, the upshot of which is that I was just diagnosed with it being metastatic (originally on scalp, now in neck lymph node(s)).
I just watched a video of Dr Seyfried on Youtube (only a few weeks old) where he explains his theory. I am going to try and find out if there is a way to find a doctor near me (greater Tampa Bay) that would implement his protocols.
Were you able to find anyone? I know that the FDA and Big Pharma have pretty much closed down all alternate theories and treatments, so I am guessing it will be pretty hard to find a doctor.
I wish you well!

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