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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.

Al | @9876 | Apr 2, 2019
In reply to @9876 "I will be getting a hormone shot of firmagon tomorrow. At the end of the month..." + (show)
@9876

I will be getting a hormone shot of firmagon tomorrow. At the end of the month I will get Trelstar. Has anyone had this before and how did it work ?

Jump to this post

1st psa 0.66 after surgery and T was 17

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dc4444 | @dc4444 | Apr 2, 2019

My 60-year-old sister has been diagnosed with pancreatic cancer stage 4 - metastasized to her liver. Currently on her 4th visit for chemotherapy at Harold Lever Cancer Center in Waterbury, CT.

For those with the same cancer:

1.) Has anyone tried alternative treatments such as oxygenation therapies and/or immune enhancement therapies (IV vitamin C) ?
- If so, what was your experience?
2.) Has anyone been to the Jacksonville Florida clinic and what was your experience?
3.) Any recommendations on approaches to this cancer?

Regards...Dan

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4 replies
marvinjsturing | @marvinjsturing | Apr 3, 2019
In reply to @dc4444 "My 60-year-old sister has been diagnosed with pancreatic cancer stage 4 - metastasized to her liver...." + (show)
@dc4444

My 60-year-old sister has been diagnosed with pancreatic cancer stage 4 - metastasized to her liver. Currently on her 4th visit for chemotherapy at Harold Lever Cancer Center in Waterbury, CT.

For those with the same cancer:

1.) Has anyone tried alternative treatments such as oxygenation therapies and/or immune enhancement therapies (IV vitamin C) ?
- If so, what was your experience?
2.) Has anyone been to the Jacksonville Florida clinic and what was your experience?
3.) Any recommendations on approaches to this cancer?

Regards...Dan

Jump to this post

@dc4444 I wish I had answers to all your questions. In my experience, each patient has a plan designed specifically for them by their doctors. So my recommendation is to find doctors you like and trust and listen to them. I was diagnosed at Stage 2b in May, 2014. I had a Whipple procedure done at Mayo in Rochester followed by 18 infusions of gemcitabine at my local hospital. I am scheduled to go to Mayo in June for my (final?) checkup. Up to this time I have remained cancer free. Praying that your sister can find answers and a treatment that works for her.

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rwb28076 | @rwb28076 | Apr 7, 2019

Hi My name is Richard. I have been diagnosed with Diffuse Large B Cell Lymphoma. I live in Johannesburg. South Africa. I find the support is lacking (in South Africa) as to how one reacts to the chemo. What to expect, chemo brain and so forth. Does anyone have any suggestions as to obtaining futher info?

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2 replies
Gaybinator | @gaybinator | Apr 7, 2019
In reply to @rwb28076 "Hi My name is Richard. I have been diagnosed with Diffuse Large B Cell Lymphoma. I..." + (show)
@rwb28076

Hi My name is Richard. I have been diagnosed with Diffuse Large B Cell Lymphoma. I live in Johannesburg. South Africa. I find the support is lacking (in South Africa) as to how one reacts to the chemo. What to expect, chemo brain and so forth. Does anyone have any suggestions as to obtaining futher info?

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https://www.mayoclinic.org/tests-procedures/chemotherapy/in-depth/get-ready-for-possible-side-effects-of-chemotherapy/art-20111159

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 7, 2019
In reply to @dc4444 "My 60-year-old sister has been diagnosed with pancreatic cancer stage 4 - metastasized to her liver...." + (show)
@dc4444

My 60-year-old sister has been diagnosed with pancreatic cancer stage 4 - metastasized to her liver. Currently on her 4th visit for chemotherapy at Harold Lever Cancer Center in Waterbury, CT.

For those with the same cancer:

1.) Has anyone tried alternative treatments such as oxygenation therapies and/or immune enhancement therapies (IV vitamin C) ?
- If so, what was your experience?
2.) Has anyone been to the Jacksonville Florida clinic and what was your experience?
3.) Any recommendations on approaches to this cancer?

Regards...Dan

Jump to this post

Hi Dan,
@burrkay and @travelgirl can tell you more about Mayo Clinic Jacksonville and the cancer center there. @chemobile speaks of his experience with pancreatic cancer and treatment at Mayo Clinic Jacksonville in this post https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/?pg=2#comment-261829

You might also be interested in these discussions on Connect
- what to expect end of life pancreatic cancer metastized to liver? https://connect.mayoclinic.org/discussion/what-to-expect-end-of-life-pancreatic-cancer-metastized-to-liver/
- Pancreatic Cancer Stage IV and in partial remission https://connect.mayoclinic.org/discussion/pancreatic-cancer-stage-iv-and-in-partial-remission/

What chemo regimen is your sister currently receiving?

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 7, 2019
In reply to @rwb28076 "Hi My name is Richard. I have been diagnosed with Diffuse Large B Cell Lymphoma. I..." + (show)
@rwb28076

Hi My name is Richard. I have been diagnosed with Diffuse Large B Cell Lymphoma. I live in Johannesburg. South Africa. I find the support is lacking (in South Africa) as to how one reacts to the chemo. What to expect, chemo brain and so forth. Does anyone have any suggestions as to obtaining futher info?

Jump to this post

Welcome to Connect, @rwb28076.
You may wish to connect with other members living with lymphoma in the Blood Cancers group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/

You could take part in this discussion
- Lymphoma https://connect.mayoclinic.org/discussion/lymphoma-1/

Richard, have you started treatment yet?

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1 reply
rwb28076 | @rwb28076 | Apr 8, 2019
In reply to @colleenyoung "Welcome to Connect, @rwb28076. You may wish to connect with other members living with lymphoma in..." + (show)
@colleenyoung

Welcome to Connect, @rwb28076.
You may wish to connect with other members living with lymphoma in the Blood Cancers group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/

You could take part in this discussion
- Lymphoma https://connect.mayoclinic.org/discussion/lymphoma-1/

Richard, have you started treatment yet?

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Hi
Firstly thank you the replies. Yes I started Chemo on the 29th March 2019. I will have chemo 6 x every 3 weeks. The links are very helpful and informative.

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dc4444 | @dc4444 | Apr 8, 2019
In reply to @colleenyoung "Hi Dan, @burrkay and @travelgirl can tell you more about Mayo Clinic Jacksonville and the cancer..." + (show)
@colleenyoung

Hi Dan,
@burrkay and @travelgirl can tell you more about Mayo Clinic Jacksonville and the cancer center there. @chemobile speaks of his experience with pancreatic cancer and treatment at Mayo Clinic Jacksonville in this post https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/?pg=2#comment-261829

You might also be interested in these discussions on Connect
- what to expect end of life pancreatic cancer metastized to liver? https://connect.mayoclinic.org/discussion/what-to-expect-end-of-life-pancreatic-cancer-metastized-to-liver/
- Pancreatic Cancer Stage IV and in partial remission https://connect.mayoclinic.org/discussion/pancreatic-cancer-stage-iv-and-in-partial-remission/

What chemo regimen is your sister currently receiving?

Jump to this post

HI,

4 chemo meds: Irinotecan, Leucovorin, Oxaliplatin, Fluorouracil.

REPLY
dc4444 | @dc4444 | Apr 8, 2019
In reply to @colleenyoung "Hi Dan, @burrkay and @travelgirl can tell you more about Mayo Clinic Jacksonville and the cancer..." + (show)
@colleenyoung

Hi Dan,
@burrkay and @travelgirl can tell you more about Mayo Clinic Jacksonville and the cancer center there. @chemobile speaks of his experience with pancreatic cancer and treatment at Mayo Clinic Jacksonville in this post https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/?pg=2#comment-261829

You might also be interested in these discussions on Connect
- what to expect end of life pancreatic cancer metastized to liver? https://connect.mayoclinic.org/discussion/what-to-expect-end-of-life-pancreatic-cancer-metastized-to-liver/
- Pancreatic Cancer Stage IV and in partial remission https://connect.mayoclinic.org/discussion/pancreatic-cancer-stage-iv-and-in-partial-remission/

What chemo regimen is your sister currently receiving?

Jump to this post

HI,

Has anyone tried alternative treatments such as oxygenation therapies and/or immune enhancement therapies (IV vitamin C) ?

REPLY
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