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.

Interested in more discussions like this? Go to the Cancer Support Group.

He is so Cute! They are so understanding! They are here on earth to Help us make it through Life!
Sundance(RB)
PS we should all start a new thread! Post pictures of our animal spirits!

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@sundance6

kathleekin, What you say is so True! Remember the old poster in the 60's and 70's, "Stop and Smell the Roses"! We all need to stop and enjoy!
That is what is so Wonderful about Mayo Connect! People on here are so compasionate and kind! We may be suffering some other Malady, but we Stop for a Moment and give our encouragement to others!
I start my mourning off when I come in my office and read the night before postings! Then end my day to sit down and read what has been posted during the day!
The Kindness and Thoughtfulness that eveyone gives to others is a Testament how Wonderful people can be and how lucky we all are to be conected!
Thanks,
Sundance(RB)

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Thank you so much! my english so poor, but I can receive your kindness and helpful mind.Wish everyone of us have a happy life!

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@naturegirl5

@leann @kathleenkin Thank you for posting the photos of your lovely dogs. I check into this discussion but have not posted in awhile and I was pleasantly surprised by the photos. Our companion animals are such a blessing. As soon as I sit down, one of the cats is on my lap and if we let the cats into the bedroom at night they would both sleep on or next to us (my partner says no animals in the bedroom).

I worry about recurrence or second cancers. I was diagnosed with endometrial cancer (endometrial adenocarcinoma FIGO Grade 1) in July, 2019) and went to Mayo Clinic in Rochester after I got the diagnosis from my local gynecologist. At Mayo, I had a radical hysterectomy with salpingo-oopherectomy and pathology after surgery showed that the adenocarcinoma was 1a with minimal invasion in the myometrium and no spread. So, I'm a cancer survivor. I'm due for my first 6 month follow-up in February, 2020 and I'll return to Mayo in Rochester for that appointment and all of my follow-up care.

I'm trying to think why I'm writing this now. Maybe it's the worry in the back of my mind that never completely leaves although is often suppressed in my day-to-day life. What else can I or any of us do but live with our lives that we share with our humans and companion animals? And some of us, like Marshall, get to share our gifts as therapy animals! And notice our blessings everyday.

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Dear naturegirl5, I wrote to you when you first joined the group. I'm glad to see that you are doing well. Like you, I don't post very often. However, I noticed your comment about your worries regarding a recurrence or secondary cancer. I would imagine all of us share those concerns, perhaps for a lifetime. Although I would say, as time goes on it does seem less burdensome emotionally on a daily basis. Most of us experience anxiety prior to an appointment. I had one in October and my blood pressure was sky high when normally it is quite low (they have me monitor it at home). I'm always completely elated when it is all over and my husband and I celebrate. Then I turn my attention to my life, my loved ones, and dear friends (I don't have a pet as I travel too much, but I had dogs for years). I'm certain your appointment will go well in February, but I truly understand your feelings. Be well.

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@sundance6

He is so Cute! They are so understanding! They are here on earth to Help us make it through Life!
Sundance(RB)
PS we should all start a new thread! Post pictures of our animal spirits!

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@sundance6 Oh that's a great idea. Please do. I have to admit, I'm new at this (new thread, etc.) so I'd be happy for you to take the lead. lol

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@gingerw

@leannn @IndianaScott @kathleenkin @hannahkeels @naturegirl5
I want to thank all who posted in this thread since @leannn's original post. You have given me much to think about. I have dealt with a rollercoaster of issues including an ultra-rare kidney disorder with no treatment nor cure. In October this year I was diagnosed with smoldering multiple myeloma. Now I face the quarterly testing of waiting-for-the-other-shoe-to-drop to see if the MM will morph into active status. But you have shown me the positivity of living each day for now. Thank you.
Ginger

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@IndianaScott @kathleenkin @hannahkeels @naturegirl5 @sundance6 @laihuaqing @gingerw @odette (Hope I didn't miss anyone) Absolutely! Thank you, everyone. Ginger said it well, you've all truly helped and encouraged me. Thank you! I know that I will think of all (Ginger, I'll be thinking of you and your quarterly testing!) and our stories hoping and praying in the days ahead. Sometimes I'm guilty of life getting busy and not even wanting to think of the word cancer. When that happens, I find myself not reading or posting. But I sure appreciate all your responses and see the power we have to uplift each other here. I will pay it forward one way or another. Blessings to all!

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@odette

Dear naturegirl5, I wrote to you when you first joined the group. I'm glad to see that you are doing well. Like you, I don't post very often. However, I noticed your comment about your worries regarding a recurrence or secondary cancer. I would imagine all of us share those concerns, perhaps for a lifetime. Although I would say, as time goes on it does seem less burdensome emotionally on a daily basis. Most of us experience anxiety prior to an appointment. I had one in October and my blood pressure was sky high when normally it is quite low (they have me monitor it at home). I'm always completely elated when it is all over and my husband and I celebrate. Then I turn my attention to my life, my loved ones, and dear friends (I don't have a pet as I travel too much, but I had dogs for years). I'm certain your appointment will go well in February, but I truly understand your feelings. Be well.

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Hello Odette, Thank you for your warm response and encouraging comments. Yes, I recall your kind note when I joined the group. My partner (a pathologist) often tells me that the chance of recurrence is very minimal given the grade (FIGO 1) and stage (1a) and no signs anywhere else. That's the reality. But you know how that is - there is reality and then there is anxiety that often has a limited basis in reality. The worries come and go and I'm hopeful, as you wrote, that the anxiety will lessen over time. Like you, I don't dwell on the cancer (but it's often in the back of my mind) and focus on what is most important in life: my family, our animals (we have a geriatric dog who requires more sensitivity and supervision), close friends, and my rewarding part-time work as a psychologist. How are you doing, Odette?

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@gingerw

@leannn @IndianaScott @kathleenkin @hannahkeels @naturegirl5
I want to thank all who posted in this thread since @leannn's original post. You have given me much to think about. I have dealt with a rollercoaster of issues including an ultra-rare kidney disorder with no treatment nor cure. In October this year I was diagnosed with smoldering multiple myeloma. Now I face the quarterly testing of waiting-for-the-other-shoe-to-drop to see if the MM will morph into active status. But you have shown me the positivity of living each day for now. Thank you.
Ginger

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I will continue to pray for you that you can enjoy each minute of every day

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Each day is a gift. Tear that wrapping paper off and grab that gift! Sing, dance, breathe, smile, love, and dream - yes dream. Now go out and make that dream come true! Enjoy your life.

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@kathleenkin

I will continue to pray for you that you can enjoy each minute of every day

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@kathleenkin Thank you!

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@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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Hi @fmh1, such a good topic of discussion "Dealing with diabetes and cancer". I bet that you are not the only member here on Connect who is managing both conditions. I might suggest that you start a new discussion in the Cancer group about it. In these instruction, you can find out how to start a new discussion: https://connect.mayoclinic.org/get-started-on-connect/

As for clinical advice regarding glucose and glutamine, that is out of my pay grade. It is certainly well worth clinical investigation. Do you know of any current clinical trials? You may wish to contact Mayo's research department:
Cancer-related clinical studies questions
Phone: 855-776-0015 (toll-free)

Did your endocrinologist explain why and increased amount of insulin was required? What changed?

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