1. < Cancer
Profile picture for Colleen Young, Connect Director
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.

Profile picture for dc4444
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

REPLY
4 replies
Profile picture for Al
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)
Profile picture for Al @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

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 27, 2019
In reply to @fmh1 "Colleen, this is my first encounter with Connect. At 61, I have stage IV prostate cancer..." + (show)
Profile picture for fmh1 @fmh1

Colleen, this is my first encounter with Connect. At 61, I have stage IV prostate cancer in the lymph nodes with a small spot on one rib. I just started chemo this past Friday, and it went well, no side effects; however, the Neulasta OnPro device failed /beeped red, so I took it off and called my doctor. He said to stop by the hospital cliinic on Monday morning. Is there someone in Connect who knows what the basic back-up plan is when the device fails? I cannot find any answers online, and all the cancer clinics are closed on the weekend. My doctor said if it is not given within 27 hours of chemo, there is no reason to get the shot. Your thoughts appreciated.

Jump to this post

@fmh1, what did you find out on Monday about the Neulasts OnPro? How are you doing?

REPLY
Profile picture for Al
Al | @9876 | Mar 26, 2019

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 ?

REPLY
1 reply
Profile picture for Al
Al | @9876 | Mar 25, 2019

I will meet with doctor Wednesday and will find out

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 25, 2019
In reply to @9876 "Collen, This is my first time on connect. I had prostate surgery on the March 19,..." + (show)
Profile picture for Al @9876

Collen, This is my first time on connect. I had prostate surgery on the March 19, 2019. Urologest removed the prostate and lymph nodes. Biopsy shows cancer in lymph nodes and semen vessels. He wants to give me Hormone shot March 27 and radiation later. Any feedback on if this is the normal plan of action to combat prostate cancer.

Jump to this post

Hi @9876 and welcome to Connect. I'd like to introduce you to @fmh1, who also recently joined the community and who has prostate cancer that has spread to the lymph nodes. He is having chemo. Everyone's treatment options are tailored for the person. You may wish to read other related discussions here:
- Prostate Cancer: What treatments did you choose after surgery? https://connect.mayoclinic.org/discussion/prostate-cancer-3/
– prostate cancer treatment choices https://connect.mayoclinic.org/discussion/prostate-cancer-treatment-choices/
– Prostate cancer treatment: stereotactic body radiation therapy https://connect.mayoclinic.org/discussion/prostate-cancer-treatment/

@9876, What type of radiation is being suggested?

REPLY
Profile picture for Al
Al | @9876 | Mar 25, 2019
In reply to @colleenyoung "@fmh1 welcome to Connect. I'm glad you found the community. You may also wish to follow..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@fmh1 welcome to Connect. I'm glad you found the community. You may also wish to follow the Prostate Cancer group here: https://connect.mayoclinic.org/group/prostate-cancer/

I can understand you're worried about the Neulasta OnPro not working. You did the right thing by calling your doctor immediately. Your doctor doesn't sound concerned about the delay in dosage. As hard as it may be, try not to worry.

Here's what I understand about white blood cells and chemotherapy. Please keep in mind that I'm NOT a health care professional. Neulasta (pegfilgrastim) is not a chemotherapy drug. It is used to stimulate the growth of "healthy" white blood cells in the bone marrow, once chemotherapy is given. White blood cells help the body to fight infection. Chemotherapy has a cumulative effect. Friday was your first treatment, so your white blood cells may not go very low this round.

Between now and going to clinic on Monday, be sure to wash your hands frequently and avoid infection. When you get to the clinic, be sure to ask questions. When they demonstrate how to use the injector, repeat back to them what they said using your own words. I hope this helps.

Jump to this post

Collen, This is my first time on connect. I had prostate surgery on the March 19, 2019. Urologest removed the prostate and lymph nodes. Biopsy shows cancer in lymph nodes and semen vessels. He wants to give me Hormone shot March 27 and radiation later. Any feedback on if this is the normal plan of action to combat prostate cancer.

REPLY
1 reply
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 24, 2019
In reply to @fmh1 "Colleen, this is my first encounter with Connect. At 61, I have stage IV prostate cancer..." + (show)
Profile picture for fmh1 @fmh1

Colleen, this is my first encounter with Connect. At 61, I have stage IV prostate cancer in the lymph nodes with a small spot on one rib. I just started chemo this past Friday, and it went well, no side effects; however, the Neulasta OnPro device failed /beeped red, so I took it off and called my doctor. He said to stop by the hospital cliinic on Monday morning. Is there someone in Connect who knows what the basic back-up plan is when the device fails? I cannot find any answers online, and all the cancer clinics are closed on the weekend. My doctor said if it is not given within 27 hours of chemo, there is no reason to get the shot. Your thoughts appreciated.

Jump to this post

@fmh1 welcome to Connect. I'm glad you found the community. You may also wish to follow the Prostate Cancer group here: https://connect.mayoclinic.org/group/prostate-cancer/

I can understand you're worried about the Neulasta OnPro not working. You did the right thing by calling your doctor immediately. Your doctor doesn't sound concerned about the delay in dosage. As hard as it may be, try not to worry.

Here's what I understand about white blood cells and chemotherapy. Please keep in mind that I'm NOT a health care professional. Neulasta (pegfilgrastim) is not a chemotherapy drug. It is used to stimulate the growth of "healthy" white blood cells in the bone marrow, once chemotherapy is given. White blood cells help the body to fight infection. Chemotherapy has a cumulative effect. Friday was your first treatment, so your white blood cells may not go very low this round.

Between now and going to clinic on Monday, be sure to wash your hands frequently and avoid infection. When you get to the clinic, be sure to ask questions. When they demonstrate how to use the injector, repeat back to them what they said using your own words. I hope this helps.

REPLY
1 reply
Profile picture for Ginger, Volunteer Mentor
Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 24, 2019
In reply to @lbern "@gingerw I just went on 5 wishes website, the wording of the wishes are direct and..." + (show)
Profile picture for lbern @lbern

@gingerw I just went on 5 wishes website, the wording of the wishes are direct and meaningful, thank you for sharing it. I am on such a surreal journey, last year at this time I couldn't even imagine that I'd have terminal cancer. I keep changing what I thought about my wishes. Initially I didn't want any pain killer that made me muddled in thinking. Now that the pain's increasing I'm beginning to feel differently. I know I want to minimize the suffering my family feels at watching my decline. I'm not sure really how to do that, I cannot reassure them of anything except my love for them....

Jump to this post

@ibern Your family is also going through so many levels of understanding and grief over your condition as it is today and may progress to in the future. Assuring them of your love for them is precious to all. You cannot script for them how to feel. Script only for yourself. Allow two or more important members of your family to understand that your desires may change as your condition changes. This is critical in adjusting things. It's a difficult situation to be in I know. Sending gentle cyber hugs to you today.
Ginger

REPLY
Profile picture for lbern
lbern | @lbern | Mar 24, 2019
In reply to @gingerw "@indianascott Like you and @burrkay I have gotten all my papers together, back in 2015 when..." + (show)
Profile picture for Ginger, Volunteer Mentor @gingerw

@IndianaScott Like you and @burrkay I have gotten all my papers together, back in 2015 when my rare kidney disease diagnosis was given. Each day is another one of gratitude. I filled out a 5 Wishes booklet to indicate my desires, and even wrote my own obituary. Funeral plans made and paid for, and that is included in packet. While it is such a sensitive subject for so many to address, my approach was to extend my kindness to others and make things as gentle as possible for them, thinking what I would like to know if in their shoes (because I have been!). And don't forget to annually or semi-annually review everything if there are changes.
Ginger

Jump to this post

@gingerw I just went on 5 wishes website, the wording of the wishes are direct and meaningful, thank you for sharing it. I am on such a surreal journey, last year at this time I couldn't even imagine that I'd have terminal cancer. I keep changing what I thought about my wishes. Initially I didn't want any pain killer that made me muddled in thinking. Now that the pain's increasing I'm beginning to feel differently. I know I want to minimize the suffering my family feels at watching my decline. I'm not sure really how to do that, I cannot reassure them of anything except my love for them....

REPLY
1 reply
Please sign in or register to post a reply.