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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.

dc4444 | @dc4444 | Apr 9, 2019
In reply to @burrkay "In reply to @dc4444 - my wife and I are both patients at Jacksonville. We are..." + (show)
@burrkay

In reply to @dc4444 - my wife and I are both patients at Jacksonville. We are very happy with her oncologist, although the one who initially treated her has left. My care has been limited to monitoring for barrett esophagus and gastrointestinal disease.
We know very little about pancreatic cancer, as my wife has stage 4 non small cell lung cancer...being treated with doublet of perjetta and herceptin (trial)...hers is a somewhat rare condition...they determined via a molecular study in 2016, that hers is a HER2 mutation in the lung...normally found in breast cancer patients. Although stage 4, she seems to be doing very well as long as she gets the infusions every 3 weeks...very little side effects, but they do closely monitor her heart.
Her infusions are administered locally with a cancer center here in South Carolina...annual followup with the oncologist in Jacksonville.
The care in Jacksonville has been excellent!

Jump to this post

Thanks for the in sight!

REPLY
All_in_1963 | @burrkay | Apr 9, 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

In reply to @dc4444 - my wife and I are both patients at Jacksonville. We are very happy with her oncologist, although the one who initially treated her has left. My care has been limited to monitoring for barrett esophagus and gastrointestinal disease.
We know very little about pancreatic cancer, as my wife has stage 4 non small cell lung cancer...being treated with doublet of perjetta and herceptin (trial)...hers is a somewhat rare condition...they determined via a molecular study in 2016, that hers is a HER2 mutation in the lung...normally found in breast cancer patients. Although stage 4, she seems to be doing very well as long as she gets the infusions every 3 weeks...very little side effects, but they do closely monitor her heart.
Her infusions are administered locally with a cancer center here in South Carolina...annual followup with the oncologist in Jacksonville.
The care in Jacksonville has been excellent!

REPLY
1 reply
dc4444 | @dc4444 | Apr 8, 2019
In reply to @travelgirl "@dc4444 I am a patient at Mayo Clinic in Jacksonville. I have been very impressed with..." + (show)
@travelgirl

@dc4444 I am a patient at Mayo Clinic in Jacksonville. I have been very impressed with all my treatments there.
They are fast efficient and treat the whole patient not just the disease.
I would get a second opinion from them for sure.
I wish you and your sister the best.
Jackie

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Thanks. After my sister Anne's next CAT scan which comes after her 5th chemo treatment, we will be evaluating her next move. Possibly to the Mayo clinic. I'm still curious about alternative treatments that I have heard good things about.

REPLY
Jackie, Alumna Mentor | @travelgirl | Apr 8, 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 am a patient at Mayo Clinic in Jacksonville. I have been very impressed with all my treatments there.
They are fast efficient and treat the whole patient not just the disease.
I would get a second opinion from them for sure.
I wish you and your sister the best.
Jackie

REPLY
1 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
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
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?

Jump to this post

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.

REPLY
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?

REPLY
1 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?

REPLY
3 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?

Jump to this post

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

REPLY
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