Need Support - Told today I'm on Palliative Care

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nynessie
Posts: 4
Joined: Mon Jun 25, 2018 1:39 pm

Need Support - Told today I'm on Palliative Care

Postby nynessie » Thu Oct 11, 2018 1:45 pm

Diagnosed in late May with Rectum Cancer, spread to ovary. Then came diagnosis of colorectal cancer (sigmoid almost completely cancerous), with adenocarcinomas to rectum and ovary. Then came possibly of two separate cancers - colorectal and ovarian. Second opinion determined no ovarian cancer. Also determined that there are cancers through my peritoneum, on abdomen wall and intestines. Ctyoreduction surgery was mentioned, but was not to be discussed until another 3 months of chemotherapy.

I had 10 weeks of FOLFOX, including 3 weeks with Avastin. Then blood counts were too low to continue. A CT scan showed increase in masses on rectum and ovary, and increase in the peritoneum cancers. In other words, it did not work.

Will begin FOLFIRI+Avastin next week. I am also dealing with a blood clot in my lung, so now put on drugs for that. Will not know if I will also be on Neulasta, will find out next week. All of this has happened in the past two weeks. The CT scan, the 2nd opinion, the change in chemo, the finding of clots.

Today I finally was able to go to the doctors appointment without my husband, so I could ask for the truth, ask that everyone be honest and straightforward with me, as I was finding it extremely difficult to continue living with possibilities, and not finding any answers. I was told, only after being asked several times if I really wanted to know, that there was not a surgical option, that I would likely not survive surgery, and that I was on Palliative Care.

I felt a huge weight lift from my shoulders. Yes, it was difficult to finally hear what I had suspected since May. But finally someone was willing to tell me. It was as if the entire staff, the whole team, had a weight lifted as well, because suddenly it was me they were treating, and not cancer person.

My husband does not know. He might know, but he is the sort of person who will hang on for the positive, for the cure, for the long life. I will not tell him that I was given this diagnosis, and that who knows how long I really have, but the best guess is at least 2 years. Then again, I'm h=just stubborn enough to double that.

I am waiting on a referral to a counselor, and will begin meeting with them. I need someone to talk with about this.

In the meantime, there are so many questions I have, and no answers. Not physical, because I can ask more openly now, and expect everyone to be honest with me, and not tip-toe around me and what I should or should not be told.

I'm sharing this with you all, as I have been lurking about this site for months, and finding out so much useful information, and now reach out to find out what I do now, what next steps to ensure my family is cared for, how to get things was for them, and how to know how best to spend what time I have left, whether it's months or years. I want each day to matter.

I hope the FOLFIRI+Avastin will work, and will kick some serious cancer to the curb. I'll do whatever I need to do to se my daughter as the lead in the high school play, to help her pick out her senior prom dress, to see her receive her high school diploma, to move her into her college dorm room. I'm fairly sure I will not see any of my four kids married, or hold grandchildren, but I sure as hell am going to try. I know I will need some help in keeping up with this ambitious plan, and know I can rely on everyone in this group. Thanks for being there.
07/11/2018 FOLFOX started
07/25/2018 FOLFOX+Avastin started
09/05/2018 FOLFOX only; last infusion due to low counts
10/16/2018 FOLFIRI+Avastin; Iron; Neulasta

Mohrfamily
Posts: 43
Joined: Tue May 22, 2018 4:04 pm

Re: Need Support - Told today I'm on Palliative Care

Postby Mohrfamily » Thu Oct 11, 2018 7:01 pm

My thoughts.... My prayers are with you. My hubby is battling stage iv colon cancer with "innumerable" lesions to his liver.

I thank God every day and all the angels keeping an eye on him, he's reacted well to treatment (knock on wood). I was devastated to say the least at the beginning, but then my husband had a take no prisoners attitude the days got easier and we are near the end of 6 months with good numbers.

Being stubborn is a great mental weapon in your arsenal. My husband was/is so stubborn for me, our young kids, for the life we built and just to break the cycle of cancer death in his family.

So you hang onto that stubborn fight even if it's a kicking , screaming, full blown terrible 2 tantrum. Your in spot I couldn't imagine being in but I pray for you and everyone else here.
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.

MissMolly
Posts: 564
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Need Support - Told today I'm on Palliative Care

Postby MissMolly » Thu Oct 11, 2018 9:18 pm

Nysessie:
I have been on Palliative Care for two years with a non-cancerous diagnosis(es) but diagnoses that are considered serious and life-threatening. Palliative Care has been a positive experience for me.

Palliative Care is whole person care. Physical, psychological, spiritual. Its focus is on improving life quality through optimal symptom management and a focus on comfort/care as opposed to “fixing” the underlying conditions. Your life views and input will be considered as paramount. Decisions on tests and procedures are made with a focus on whether there is benefit to be gained. Tests and procedures that have questionable value will be deferred, unless you request otherwise. Ex. I have decided to defer yearly mammograms.

Palliative Care comes to me, providing in-home care. I appreciate not having to expend the better part of a day going to a physician appointment - ending up exhausted. Palliative Care works with members of my immediate family, providing them with counseling and support. As a family, we are healthier for the involvement of Palliative Care.

I think you will be impressed with the Palliative Care model. It is all about making the best of a less than ideal situation, and finding continued value and meaning in life while
facing a serious, life-altering illness.
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.

User avatar
ANDRETEXAS
Posts: 600
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Need Support - Told today I'm on Palliative Care

Postby ANDRETEXAS » Fri Oct 12, 2018 1:00 am

I just want to say that I admire all three of you. Each of you has a story and has taken charge. I do believe that a positive attitude, no matter what one's prognosis, is a key to enjoying life. I have learned a lot reading this thread, and I wish nothing but the best for all of you. Andre
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy

ONE DAY AT A TIME !

User avatar
Atoq
Posts: 319
Joined: Wed Oct 25, 2017 9:31 am

Re: Need Support - Told today I'm on Palliative Care

Postby Atoq » Fri Oct 12, 2018 6:59 am

I hope the new regime will shrink the cancer and hold things under control. Enyoing any minute with our kids and loved ones is for me the key to happiness, «palliative care» sounds scary, but so does «cancer» and «stage 4». We need to stay positive and keep on moving...

A big hug

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

User avatar
Maggie Nell
Posts: 843
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Need Support - Told today I'm on Palliative Care

Postby Maggie Nell » Fri Oct 12, 2018 10:49 am

Hey there nynessie,

I don't know how deep into the forum archives you have mined but when I joined I found the pragmatism of
Gaelen resonated with my way of tackling life. In my younger years I had been a caregiver to a parent and can
well remember the 'not likely to survive surgery' moment and how that recalibrated everything.

I will drop in this link to an archived thread and if you don't already know how to navigate around, just click on the
names, and that will take you to their profile, then click on "search user's post".

viewtopic.php?f=1&t=34289&p=236417#p236417

Every now and then when something intangible is gnawing away at me, I gain fortitude and comfort from 'visiting'
the archives and just following my nose - threadhopping - and I always come away with something that refreshes me; a deeper
understanding, a new strategy and amazing personal accounts of defying gravity.

You're going to need all your energy for the road ahead, nynessie, and hiding the reality of your situation from others, can
become undermining and self-isolating. It prevents others from being fully in the now with you.

May you receive optimal outcomes from the course of FOLFIRI/Avastin.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

teresajj1
Posts: 34
Joined: Sun Mar 27, 2016 7:36 pm
Location: Florida

Re: Need Support - Told today I'm on Palliative Care

Postby teresajj1 » Fri Oct 12, 2018 1:26 pm

I am facing similar circumstances. I've spent the day in bed crying scared and depressed. This is of course not how I want to live the last months or years of my life. I feel I am at a crossroads and my strength and positivity are slowly going away. Its not easy to seek the truth as you did. Most people don't want to know the truth (my docs have told me). I guess now the question is, what do you do with that truth? How can you live your best life? How can you make the most of the time with your kids and husband?

I keep telling myself that knowing is a gift that most people will never get. Most people will die suddenly and not get to say all the things they wanted to. I get to make sure nothing is left unsaid, have no regrets, and live my life to the fullest. I find comfort in these threads and stories. I too have kept things from my husband when it comes to my health to try and lessen the burden on him. So the people here that are sharing like you really mean a lot.

Your in my thoughts and prayers. I believe there is power in mental positivity. Your attitude is great and hopeful. Don't be afraid to say 4 years! Anything is possible.❤
Dx 3/16 @ 36yrs Stage IIIB-6/18 Stage IV
RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain
8/2017 MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447 & CA-125 144
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
10/2018 Clear CT

mhf1986
Posts: 156
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Need Support - Told today I'm on Palliative Care

Postby mhf1986 » Fri Oct 12, 2018 4:45 pm

2 years ago this week, DH was told the same thing. It is heartbreaking to hear the medical community believes there is no cure. But he continues on, now looking for approval from the insurance company for Lonsurf and looking into clinical trials. I am amazed every day at him. Be your own best advocate for what YOU want and march on.
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials

Lydia666
Posts: 673
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Need Support - Told today I'm on Palliative Care

Postby Lydia666 » Sun Oct 14, 2018 7:48 am

nynessie wrote:Diagnosed in late May with Rectum Cancer, spread to ovary. Then came diagnosis of colorectal cancer (sigmoid almost completely cancerous), with adenocarcinomas to rectum and ovary. Then came possibly of two separate cancers - colorectal and ovarian. Second opinion determined no ovarian cancer. Also determined that there are cancers through my peritoneum, on abdomen wall and intestines. Ctyoreduction surgery was mentioned, but was not to be discussed until another 3 months of chemotherapy.

I had 10 weeks of FOLFOX, including 3 weeks with Avastin. Then blood counts were too low to continue. A CT scan showed increase in masses on rectum and ovary, and increase in the peritoneum cancers. In other words, it did not work.

Will begin FOLFIRI+Avastin next week. I am also dealing with a blood clot in my lung, so now put on drugs for that. Will not know if I will also be on Neulasta, will find out next week. All of this has happened in the past two weeks. The CT scan, the 2nd opinion, the change in chemo, the finding of clots.

Today I finally was able to go to the doctors appointment without my husband, so I could ask for the truth, ask that everyone be honest and straightforward with me, as I was finding it extremely difficult to continue living with possibilities, and not finding any answers. I was told, only after being asked several times if I really wanted to know, that there was not a surgical option, that I would likely not survive surgery, and that I was on Palliative Care.

I felt a huge weight lift from my shoulders. Yes, it was difficult to finally hear what I had suspected since May. But finally someone was willing to tell me. It was as if the entire staff, the whole team, had a weight lifted as well, because suddenly it was me they were treating, and not cancer person.

My husband does not know. He might know, but he is the sort of person who will hang on for the positive, for the cure, for the long life. I will not tell him that I was given this diagnosis, and that who knows how long I really have, but the best guess is at least 2 years. Then again, I'm h=just stubborn enough to double that.

I am waiting on a referral to a counselor, and will begin meeting with them. I need someone to talk with about this.

In the meantime, there are so many questions I have, and no answers. Not physical, because I can ask more openly now, and expect everyone to be honest with me, and not tip-toe around me and what I should or should not be told.

I'm sharing this with you all, as I have been lurking about this site for months, and finding out so much useful information, and now reach out to find out what I do now, what next steps to ensure my family is cared for, how to get things was for them, and how to know how best to spend what time I have left, whether it's months or years. I want each day to matter.

I hope the FOLFIRI+Avastin will work, and will kick some serious cancer to the curb. I'll do whatever I need to do to se my daughter as the lead in the high school play, to help her pick out her senior prom dress, to see her receive her high school diploma, to move her into her college dorm room. I'm fairly sure I will not see any of my four kids married, or hold grandchildren, but I sure as hell am going to try. I know I will need some help in keeping up with this ambitious plan, and know I can rely on everyone in this group. Thanks for being there.

I am in the same situation as you. Fighting for everyday.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

nynessie
Posts: 4
Joined: Mon Jun 25, 2018 1:39 pm

Re: Need Support - Told today I'm on Palliative Care

Postby nynessie » Tue Oct 23, 2018 7:30 am

I thank you all for your support. I'm still glad I asked for the answers, the information, about my diagnosis, and more importantly about my level of care as doctors have decided. It gives me the control I needed, and I can now "fight back" if needed, especially when they tell me things like "we're waiting to schedule your PET for this Thursday once we have confirmation from your insurance". [This happened, and I now have the inner strength to tell them my insurance is not going to confirm a 2nd one unless it follows surgery, so to forget about it. I had to prep and reschedule things for an "if" and then reschedule for a Friday CT.]

I have a journal I started when I was going to my very first infusion. I've written in it each and every day, and the beginning was filled with "what if" and "What's happening" and "why don't I know" -- and now it is filled with daily things such as what photos to select for our daughter's senior photo, or what CDs to get my husband for Christmas, and if the weather will be good so our oldest can get here for her sister's fall play (she's Alice in Alice in Wonderland). It's become my only journal (I had two) and all my appointments and events are added to the calendar. This is my new life.

As for my husband, I do believe he already knows. He has been at every appointment with me since the start, except for once when he was teaching and I told him not to cancel. It was the one time I could ask, and it only clarified my suspicions. So, yes, I think he knows that surgery is not an option, and that we've whatever time we have.

I've done the first of my FOLFIRI+Avastin, and it was ok. I followed that up with iron infusion (the 2nd one is this Friday), and Neulasta. Guess if that is what I need to keep on this path, it's going to happen. For those on Neulasta (the one where the pump is attached to arm) did you take the recommended 5-days of Clariton and Aleve (in my case I can only take Tylenol)? I did the day before and the day of the "injection", but then stopped and didn't have issues.

I'm glad I found this place, and will dig about for other posts. I have been referred to a counselor, but was told it might take 2-3 weeks before the office calls me. I'm sensing she/he is the only one in the area. No surprise, as this is a rural location.

Take care all of you.

PS: I'd do a signature but not sure what I need to know and what to include ....
07/11/2018 FOLFOX started
07/25/2018 FOLFOX+Avastin started
09/05/2018 FOLFOX only; last infusion due to low counts
10/16/2018 FOLFIRI+Avastin; Iron; Neulasta

MissMolly
Posts: 564
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Need Support - Told today I'm on Palliative Care

Postby MissMolly » Tue Oct 23, 2018 1:01 pm

Nynassie:
I am glad to see you reaching out and posting about your introduction to Palliative Care. I think it is a model of care that many members/and family could benefit from earlier in their treatment process.

Palliative Care is whole person care for anyone with a life-threatening illness. It is a model of care that incorporates the physical body, mind, and spirit across a spectrum of clinical providers - generally a coordinating Palliative Care MD, registered nurse, social services, psychologist, chaplain, physical and occupational therapy, dietician - who weave in and out as a person’s immediate needs change and indicate.

A person can still receive ongoing treatment for his/her specific condition while enrolled in Palliative Care.

In my experience with Palliative Care over the past 2 years, there has been only positive benefit to be found for both myself and my immediate family. Counseling for my immediate family has been immensely helpful in easing their worries, concerns, and “what ifs?” I interact and spend time with my family less as a “sick” person and more as the daughter/sister that I have always been.

Serious illness is a challenging terraine to navigate on an ongoing basis where there may be no “fix” or “getting better” on the horizon. Life as I once knew it will never be the same. Finding a model of care that addesses distressing physical symptoms (excruciating pain, unrelenting nausea, dizziness, fragile skin, et.) and the accompanying emotional gyrations (sadness, frustration, isolation, loss) has been the core of my experience with Palliative Care. I do not have to explain myself to my care providers. They “get it.” They understand the nuisances of compromised health and provide realistic and measured optimism to help me find comfort and meaning in an altered life.

Bottom Line: Do not be afraid to look into Palliative Care. Become informed of its philosophy and services. Reaching out for Palliative Care is not synonymous with giving up. In fact, it is just the polar opposite. Palliative Care is all about living one’s best life despite a serious, life-altering condition. Making the best of a less than ideal situation.

Nyneeasie, I hope for you a comforting experience with Palliative Care.
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.

Jannine
Posts: 76
Joined: Wed Jun 20, 2018 7:46 am

Re: Need Support - Told today I'm on Palliative Care

Postby Jannine » Tue Oct 23, 2018 8:00 pm

nynessie, thanks for letting us know all this. It sounds like you are handling this difficult situation well, and I really appreciate your insight into the process.

I'm currently giving myself a neulasta shot every other week after FOLFOX treatment. I haven't been taking aleve or claritin (claritin may be one of the antihistamines that makes my heart race, and I don't really want to test it and find out; my dad has the same problem so this is a genetic thing and isn't a typical problem). So I guess I have the flip problem that you have regarding aleve/claritin. I've given myself 6 of the shots so far. I do wake up with a headache a day or two after the shot, but I find that getting up and getting moving makes it go away. I do have some bone pain a day or two after the shot too, but so far it's really not bad. I'd put it at a 1 or 2 on the pain scale, so not bad enough for me to want to take something for it, so far. I have 4 infusions + neulasta shots still to go, though. The neulasta bone ache does strike at really odd times though, not necessarily when you're getting up or moving around or taking a deep breath. For me it is mostly rib pain, and happens at odd times, like right after I take a bite of food. It doesn't tend to last long, though.

I hope Palliative Care helps you out. I don't know that I would be handling it with the grace you seem to be bringing to bear on this situation, and I admire your fighting spirit. My hat is off to you.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4


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