Struggling with terminal diagnosis

Please feel free to read, share your thoughts, your stories and connect with others!
Awreed
Posts: 65
Joined: Sun May 04, 2014 11:32 pm

Struggling with terminal diagnosis

Postby Awreed » Sun Sep 25, 2016 9:25 pm

Does anyone else struggle with a stage IV terminal diagnosis but currently feel strong? I know this will change, not sure how long though, i.e. Sooner vs later. I've exhausted all chemo except lonsurf and straviga so I'm assuming sooner. But it's SO strange, on paper, I've never been this close to death but today I swam 200 lengths of the pool non stop- over 3 miles! I did that once before 30 years ago! I usually swim 2 miles but I think I have this adrenalin pumping through me trying to "exercise" the cancer away which I know isn't going to happen.
HOW can I focus on my CURRENT health status vs focusing on what's destined to come.... Whether that's sooner or later??
Stage IV crc 5/11
Peritoneal spread-Cytoreductive Surgery 6/13
Liver resection-8/13
Chemo 10/13-3/14
NED- 5/14

Nik Colon

Re: Struggling with terminal diagnosis

Postby Nik Colon » Sun Sep 25, 2016 10:36 pm

I personally try to just live for today but the long term comes to mind often. I just try to enjoy the now and look at the advances being made for possible cure. It's not easy at times, but I try to tell myself what will be will be and I can't change it so why stress out about it. I try to look at it as anything in life can happen, we just dont know. Just live for today and have hope that better things are around the corner. I was an early stage 4 and had all known cancer removed, but have some spots they are watching, which have shown possible growth, but i try not to think the worst. We cant control our thoughts, but we can try to stay positive. Hugs

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Struggling with terminal diagnosis

Postby KElizabeth » Sun Sep 25, 2016 10:51 pm

I feel great most days too. Really I want to live more now than I ever have. My life has become what I always wanted except for cancer. I picked up my art again after years of neglect and found that I now have life expirience to draw upon to make some meaningful art. I always had the technical skills but having something inside worth putting on paper is a different story.
I feel motivated to take on projects, to volunteer in the community and become a better me. I'm on day 12 of the cycle so today I can take on the world! I definitely don't feel like I'm dying.

~Elizabeth
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: Struggling with terminal diagnosis

Postby Wonderfullymade » Mon Sep 26, 2016 7:37 am

Yes! I can totally relate! I feel better than I have felt in years, tons of energy, good workouts etc...but it's still there... The knowing that this beast is in me and every scan tells the really story. I keep pressing forward, praying our cure is right around the corner though, and I find so much inspiration on this forum to stay positive. My goal at this point is to keep looking for the next trial drug that will find me NED ...and...take as many of you with me!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Re: Struggling with terminal diagnosis

Postby MDK » Mon Sep 26, 2016 8:03 am

I was told last week that I am incurable - I could live two years, I could live 10 years - depending on my response to treatment. Somehow I now feel like my life is not my own (was it ever)? I am a Christian but am not in a good place right now. I cry a lot - I read this board continually. It is a great source of hope.
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: Struggling with terminal diagnosis

Postby teri3 » Mon Sep 26, 2016 2:26 pm

I'm in the same boat, I feel great. I look good except this thinning hair grrrr! I choose not to dwell on it, like you I take great hope from this board. There are so many who have beat this or just keep going. Don't give up, don't give in, attitude is everything. New things are coming out all the time. Hang in there.
HUGS,
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: Struggling with terminal diagnosis

Postby Wonderfullymade » Mon Sep 26, 2016 3:23 pm

MDK wrote:I was told last week that I am incurable - I could live two years, I could live 10 years - depending on my response to treatment. Somehow I now feel like my life is not my own (was it ever)? I am a Christian but am not in a good place right now. I cry a lot - I read this board continually. It is a great source of hope.


I was/am still having a hard time facing this as well, also a Christian. I just read a book that help me tremendously by Levi Lusko titled " Through the eyes of a lion" He is a pastor who lost his 5 year old daughter to an asthma attack. He really does an excellent job of making heaven real...
I will keep you in my prayers that you will find peace in this difficult situation!
wonderfullymade
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

User avatar
mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Struggling with terminal diagnosis

Postby mypinkheaven » Mon Sep 26, 2016 3:47 pm

Awreed wrote:
HOW can I focus on my CURRENT health status vs focusing on what's destined to come.... Whether that's sooner or later??


In our situations, it's difficult to stay in the "present" - so hard to turn that big brain off. You're feeling good now - try to enjoy it. Are you doing things that you like to do? Things you can put your full concentration into? Things that are diverting?

I think it's good and necessary to research and read this forum, but it should be just one part of your day. Then put that part "on a shelf" and do something else. We're people with many interests that happen to have cancer. Don't let the disease be all encompassing.

I was talking to a very smart woman the other day about quality of life vs. longevity. Her grandmother lived to be in her eighties, but the last 20 years of her life were filled with pain and discomfort. My mother-in-law also lived to be in her eighties, but she had Alzheimers for at least 16 years and didn't really "experience" those years. No one is happy all the time, but if we can practice taking pleasure for a few moments in the things we like, we can eventually string all those moments together and at least be content in whatever time we have.

AND, a diagnosis on paper isn't real life. There are many treatments coming very, very, very soon.

I wish you all the best.

Sally
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: Struggling with terminal diagnosis

Postby jortego128 » Mon Sep 26, 2016 4:17 pm

Awreed, your sig indicates that you are NED since 2014-- I definitely dont want to jinx anything but it seems you have it squashed pretty good ATM-- you should take some comfort in that.

Of course I say this assuming your sig is up to date.

All the best.

Josh
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Struggling with terminal diagnosis

Postby MissMolly » Mon Sep 26, 2016 4:17 pm

Wonderfullymade wrote:I just read a book that help me tremendously by Levi Lusko titled " Through the eyes of a lion" He is a pastor who lost his 5 year old daughter to an asthma attack. He really does an excellent job of making heaven real...


If you allow just one word to explain how I am adapting to my own recent transition to Hospice it is may be this: God/Higher Power.

I sustained an extensive perforation of my intestine approximately 4 years ago and was declared clinically dead for all of 2 minutes, revived successfully by the coordinated efforts of a trauma team.

I have defined death once. I will not be so fortunate this next time.

I can tell you about my experience during the time that I was "dead." While it is not something that I share freely or openly, in the instances that I have shared of my near-death experience people the response has been positive. People tell me that they my experience has given them a sense of peace and comfort.

Where did I go during my near-death experience?

I am not exactly sure. My sense is that I was somewhere between this physical place that we call Earth and the metaphorical concept that we call Heaven.

Describe the situation? What happened during your near-death experience?

I was surrounded by a nebulous swirl of what I can best describe as a cloud or fog. It was as though I was in a fish bowl, looking outward through the water. A prism effect where shapes had no regular form.

I had no physical body. I was purely an energy source.

I felt no pain, as I had no physical body. This was immediately apparent to me as in the days preceding the acute intestinal perforation I had been very uncomfortable and in significant pain. I was immensely relieved to no longer be in pain.

I felt no fear. I felt no anxiety. No concern or worry.

How might this be?

The first thing that I recall that I was in the presence of God/Higher Power. His presence was not a physical presence. There was no body shape or form. His presence was manifest as an intense and ever present energy source. All encompassing. Immensely comforting. The energy source was immediately recognizable to me as God/Higher Power. I knew that I was "talking" to God/Higher Power.

There were no words exchange. But there was "dialogue" in the a metaphysical exchange of energy between us.

It was not a conversation with God/Higher Power in the literal sense of verbal words exchange. Rather it was dialogue as a flow of energy. I was given explicit goals and directives in returning to life on earth.

I will add that not a day goes by that I do not give thought to the goals/directives that were issued to me. I've done the best that I could to be pay my respect to the goals/directives given to my some 4 years ago. I've done the best that I could to be the best person that I could be.

How/why did I come back to earth?

It was not for me to choose or decide. It was a decision/choice that God/Higher power made that I was to return to remain on earth for a while longer. I have to assume that God/Higher Power felt that I had unfinished business to attend to.

Honestly, where ever it was that I was was so comfortable and safe and pain free that I wanted to stay. I do not know so much that I wanted to come "back home" to earth.

I have no doubt that the experience was real.

My near-death experience is making it easier for me to acknowledge my recent transition to Hospice care.

I hope that sharing my near-death experience will help someone(s) approach death/dying with less fear.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Re: Struggling with terminal diagnosis

Postby MDK » Mon Sep 26, 2016 4:36 pm

Karen,

Thank you.

Marianne
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

Nik Colon

Re: Struggling with terminal diagnosis

Postby Nik Colon » Mon Sep 26, 2016 11:21 pm

MissMolly wrote:
Wonderfullymade wrote:I just read a book that help me tremendously by Levi Lusko titled " Through the eyes of a lion" He is a pastor who lost his 5 year old daughter to an asthma attack. He really does an excellent job of making heaven real...


If you allow just one word to explain how I am adapting to my own recent transition to Hospice it is may be this: God/Higher Power.

I sustained an extensive perforation of my intestine approximately 4 years ago and was declared clinically dead for all of 2 minutes, revived successfully by the coordinated efforts of a trauma team.

I have defined death once. I will not be so fortunate this next time.

I can tell you about my experience during the time that I was "dead." While it is not something that I share freely or openly, in the instances that I have shared of my near-death experience people the response has been positive. People tell me that they my experience has given them a sense of peace and comfort.

Where did I go during my near-death experience?

I am not exactly sure. My sense is that I was somewhere between this physical place that we call Earth and the metaphorical concept that we call Heaven.

Describe the situation? What happened during your near-death experience?

I was surrounded by a nebulous swirl of what I can best describe as a cloud or fog. It was as though I was in a fish bowl, looking outward through the water. A prism effect where shapes had no regular form.

I had no physical body. I was purely an energy source.

I felt no pain, as I had no physical body. This was immediately apparent to me as in the days preceding the acute intestinal perforation I had been very uncomfortable and in significant pain. I was immensely relieved to no longer be in pain.

I felt no fear. I felt no anxiety. No concern or worry.

How might this be?

The first thing that I recall that I was in the presence of God/Higher Power. His presence was not a physical presence. There was no body shape or form. His presence was manifest as an intense and ever present energy source. All encompassing. Immensely comforting. The energy source was immediately recognizable to me as God/Higher Power. I knew that I was "talking" to God/Higher Power.

There were no words exchange. But there was "dialogue" in the a metaphysical exchange of energy between us.

It was not a conversation with God/Higher Power in the literal sense of verbal words exchange. Rather it was dialogue as a flow of energy. I was given explicit goals and directives in returning to life on earth.

I will add that not a day goes by that I do not give thought to the goals/directives that were issued to me. I've done the best that I could to be pay my respect to the goals/directives given to my some 4 years ago. I've done the best that I could to be the best person that I could be.

How/why did I come back to earth?

It was not for me to choose or decide. It was a decision/choice that God/Higher power made that I was to return to remain on earth for a while longer. I have to assume that God/Higher Power felt that I had unfinished business to attend to.

Honestly, where ever it was that I was was so comfortable and safe and pain free that I wanted to stay. I do not know so much that I wanted to come "back home" to earth.

I have no doubt that the experience was real.

My near-death experience is making it easier for me to acknowledge my recent transition to Hospice care.

I hope that sharing my near-death experience will help someone(s) approach death/dying with less fear.
- Karen -

My late grandpa and best friends mom had nde's. I believe my dad did too but can't remember. The one thing in common is the not wanting to come back and the peace they felt and no longer fearing death. My dad can't remember, but shortly after he was mad he came back. Now he feels differently, but right after he was angry to be here. But those things comfort me (not the anger but the comfort they felt). The lack of fear and how wonderful those who remember said it was. I too believe there are reasons they came back. I won't go into all, but my dad, my bf who lived with my parents at the time of her passing (the ones whos mom had a nde) and my brother died a few yrs ago, 2 yrs apart, and now me with cancer. 2010, 2012, 2014. I feel he was meant to stay here for my mom and family. Jmo

User avatar
HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Struggling with terminal diagnosis

Postby HopeForJesse » Tue Sep 27, 2016 7:27 pm

Thank you Karen for so eloquently sharing! I have a book shelf full of NDE stories and have always been quite fascinated with the topic. As a Christian, the Psalms have particulary comforted me this past year. God Bless you. Mary

MissMolly wrote:
Wonderfullymade wrote:I just read a book that help me tremendously by Levi Lusko titled " Through the eyes of a lion" He is a pastor who lost his 5 year old daughter to an asthma attack. He really does an excellent job of making heaven real...


If you allow just one word to explain how I am adapting to my own recent transition to Hospice it is may be this: God/Higher Power.

I sustained an extensive perforation of my intestine approximately 4 years ago and was declared clinically dead for all of 2 minutes, revived successfully by the coordinated efforts of a trauma team.

I have defined death once. I will not be so fortunate this next time.

I can tell you about my experience during the time that I was "dead." While it is not something that I share freely or openly, in the instances that I have shared of my near-death experience people the response has been positive. People tell me that they my experience has given them a sense of peace and comfort.

Where did I go during my near-death experience?

I am not exactly sure. My sense is that I was somewhere between this physical place that we call Earth and the metaphorical concept that we call Heaven.

Describe the situation? What happened during your near-death experience?

I was surrounded by a nebulous swirl of what I can best describe as a cloud or fog. It was as though I was in a fish bowl, looking outward through the water. A prism effect where shapes had no regular form.

I had no physical body. I was purely an energy source.

I felt no pain, as I had no physical body. This was immediately apparent to me as in the days preceding the acute intestinal perforation I had been very uncomfortable and in significant pain. I was immensely relieved to no longer be in pain.

I felt no fear. I felt no anxiety. No concern or worry.

How might this be?

The first thing that I recall that I was in the presence of God/Higher Power. His presence was not a physical presence. There was no body shape or form. His presence was manifest as an intense and ever present energy source. All encompassing. Immensely comforting. The energy source was immediately recognizable to me as God/Higher Power. I knew that I was "talking" to God/Higher Power.

There were no words exchange. But there was "dialogue" in the a metaphysical exchange of energy between us.

It was not a conversation with God/Higher Power in the literal sense of verbal words exchange. Rather it was dialogue as a flow of energy. I was given explicit goals and directives in returning to life on earth.

I will add that not a day goes by that I do not give thought to the goals/directives that were issued to me. I've done the best that I could to be pay my respect to the goals/directives given to my some 4 years ago. I've done the best that I could to be the best person that I could be.

How/why did I come back to earth?

It was not for me to choose or decide. It was a decision/choice that God/Higher power made that I was to return to remain on earth for a while longer. I have to assume that God/Higher Power felt that I had unfinished business to attend to.

Honestly, where ever it was that I was was so comfortable and safe and pain free that I wanted to stay. I do not know so much that I wanted to come "back home" to earth.

I have no doubt that the experience was real.

My near-death experience is making it easier for me to acknowledge my recent transition to Hospice care.

I hope that sharing my near-death experience will help someone(s) approach death/dying with less fear.
- Karen -
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 109 guests