Need Support - Told today I'm on Palliative Care

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Nohogirl
Posts: 116
Joined: Sun Oct 14, 2018 12:15 am

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

Postby Nohogirl » Tue Jan 08, 2019 2:40 pm

You are such a brave woman and you are handling your situation so well. Praying for good news.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Tue Jan 08, 2019 3:22 pm

nynessie,
Thinking of you and I hope that the Palliative Care will give you the “emotional peace and physical comfort” that Miss Molly describes. Hoping your scan result will be good!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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

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

Postby nynessie » Sat Apr 06, 2019 8:29 am

Update:
Not sure I mentioned it already. Avastin was removed from my treatment. My current ONC said she didn't want me taking it as I take a daily coagulant. She then said she'd like to "keep it inter back pocket" for the future. Huh.

Another CT/Scan was to be this week. My current ONC told me she was pushing it off to "maybe next month" without explanation. She told me she wanted me to see my GI, and now I have an appointment with him April 24. (Note, this is on day 2 of my treatment so I get to go to this appointment with my 5-FU pump. Oh Joy.)

My March CEA was 4.6 (down by .1) and the scan (of January 7) showed the mass(es) were decreased to about 8cm. Left and Right. My current ONC was unable, perhaps unwilling, to explain what "left" and "right" actually referred to. I asked in January, again in February, and didn't bother in March.

Explanation: When I say "current ONC" I mean this is the third ONC I have seen at my hospital since June 2018. There is one ONC and an ONC-PA here, and yes, they are too few for the number of patients, yet, for me, it means having a new person on my case every 3 months or so. I doubt this one will stay. This current one holds her cards close, not sharing with me much.

My husband tells me this is good, as she is not willing to tell me something that she is not sure about. For him that's fine. For me, it causes anxiety. Why are we withholding Avastin? Last time (ONC #2) pulled it because he believed I was a possible candidate for surgery. She's holding it back for later? I was not experiencing any issues with the drug and my coagulant. But hey, she has her reasons, I guess. Why skip the scan? Why the sudden need to see my GI, who I have not seen since June. No answers. To be fair, she did say she was concerned about some bleeding, but I know it is my hemorrhoid, and have explained this each time we meet. She might have other reasons, but once again, asking doesn't get me answers.

My husband tells me that each time a new ONC comes in it is a new set of eyes. Another opinion. Like getting a lot of "second opinions".

Frustrated, and anxious, and yet managing. :) This week I joked that I was covering for the person who was covering for me. Which is exactly what happened.

Other news: my therapist, after months of discussion, finally got me to get my medical-cannibus license. I now am on a very low dose, and I have to admit it is helping me with my anxiety. I drive 140 miles (one-way) one a month to get the prescription filled. It's also not covered by insurance, and is expensive. But if it helps me sleep at night I am all for it.

This weekend is my daughter's final theater show (she's a high senior, this is her 8th show) and we have guests here to see her. I'm enjoying the weekend. I'm totally enjoying this weekend.

Next treatment is Tuesday. it will be the 13th for FOLFIRI and the 18th overall.

Thanks to you all for this group. Even with my daily journal, I need to share, to vent, to maybe encourage others this is all possible. As the ONC-PA said, I have active cancer, but with the right treatment, I can live with it. So live with it I will.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
12/19/2019 CEA <0.5, CA125 36, Scan no change

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

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

Postby zephyr » Sat Apr 06, 2019 10:49 am

nynessie wrote:
Even with my daily journal, I need to share, to vent, to maybe encourage others this is all possible. As the ONC-PA said, I have active cancer, but with the right treatment, I can live with it. So live with it I will.


You are encouraging others. Sometimes someone comes along and says exactly the thing one needs to hear at that point in time. Thank you for the gift.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

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

Postby brokenwings » Sun Apr 07, 2019 5:17 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.


Hello Nynessie,
I was reading your message and two things struck my attention.

1. Your oncologists being pessimistic about the growth in your ovary. I know there are oncologists who don't know what I'm about to tell you (shame on them) but CHEMO DOES NOT ALWAYS WORK ON METS TO THE OVARY!!! They just keep growing!! I saw 3 oncs: one of them didn't know it but the other two told me that. This means that under no circumstances a growth in the ovary can be considered as "chemo failure". Believe me, I know, I'm in a similar situation to yours (except for the mets in the rectum). By the way, can't they give you radiation for that?
2. I'm surprised that they didn't put you on Folfiri as first line of treatment, it was my understanding that Irinotecan is the best chemo product for peri mets. (Although Folfox may work as well).
If this protocol works for you, will surgery still be off the table?
Have you considered seeking a second opinion?

All the best,
Paola
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

natelaugh
Posts: 95
Joined: Wed Apr 03, 2019 11:40 pm

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

Postby natelaugh » Sun Apr 07, 2019 12:46 pm

nynessie wrote:Update:
Not sure I mentioned it already. Avastin was removed from my treatment. My current ONC said she didn't want me taking it as I take a daily coagulant. She then said she'd like to "keep it inter back pocket" for the future. Huh.

Another CT/Scan was to be this week. My current ONC told me she was pushing it off to "maybe next month" without explanation. She told me she wanted me to see my GI, and now I have an appointment with him April 24. (Note, this is on day 2 of my treatment so I get to go to this appointment with my 5-FU pump. Oh Joy.)

My March CEA was 4.6 (down by .1) and the scan (of January 7) showed the mass(es) were decreased to about 8cm. Left and Right. My current ONC was unable, perhaps unwilling, to explain what "left" and "right" actually referred to. I asked in January, again in February, and didn't bother in March.

Explanation: When I say "current ONC" I mean this is the third ONC I have seen at my hospital since June 2018. There is one ONC and an ONC-PA here, and yes, they are too few for the number of patients, yet, for me, it means having a new person on my case every 3 months or so. I doubt this one will stay. This current one holds her cards close, not sharing with me much.

My husband tells me this is good, as she is not willing to tell me something that she is not sure about. For him that's fine. For me, it causes anxiety. Why are we withholding Avastin? Last time (ONC #2) pulled it because he believed I was a possible candidate for surgery. She's holding it back for later? I was not experiencing any issues with the drug and my coagulant. But hey, she has her reasons, I guess. Why skip the scan? Why the sudden need to see my GI, who I have not seen since June. No answers. To be fair, she did say she was concerned about some bleeding, but I know it is my hemorrhoid, and have explained this each time we meet. She might have other reasons, but once again, asking doesn't get me answers.

My husband tells me that each time a new ONC comes in it is a new set of eyes. Another opinion. Like getting a lot of "second opinions".

Frustrated, and anxious, and yet managing. :) This week I joked that I was covering for the person who was covering for me. Which is exactly what happened.

Other news: my therapist, after months of discussion, finally got me to get my medical-cannibus license. I now am on a very low dose, and I have to admit it is helping me with my anxiety. I drive 140 miles (one-way) one a month to get the prescription filled. It's also not covered by insurance, and is expensive. But if it helps me sleep at night I am all for it.

This weekend is my daughter's final theater show (she's a high senior, this is her 8th show) and we have guests here to see her. I'm enjoying the weekend. I'm totally enjoying this weekend.

Next treatment is Tuesday. it will be the 13th for FOLFIRI and the 18th overall.

Thanks to you all for this group. Even with my daily journal, I need to share, to vent, to maybe encourage others this is all possible. As the ONC-PA said, I have active cancer, but with the right treatment, I can live with it. So live with it I will.


I hope you the best. Have you talk with the cannabis dispensary about Rick Simonson Oil as an alternative med for treatment?

Nate.
Caregiver to 80M
DX:CC,RC,desc
11/2018 rightPain
1/19/19 scopy,path
1/23 CTscan
2/19 surgery
2/26-2/28 NGTube
2/28-3/14 TPN bc ileus
3/2 2nd surgeryCloseOpenWound
3/4-3/28 woundVac
size: 6cm Adenocarcinoma
grade Poorly
Stage IIIC T3N2aMx
PositiveLymph:5of28
BaselineCEA:68
LVI:Y
PNI:N
Surgical margins:clear
MSI:MMR (MLH1, MSH2, MSH6, PMS2) Intact nuclear expression
Lynch status:N
Laparascopic, partial colectomy
CEA:3/28/19 2.8
Chemo:4/16/19-9/17/19 5FU,12cycles,every 14days,leucoverin,zofran,Dexamethasone

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

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

Postby nynessie » Mon Apr 08, 2019 6:00 pm

Saw my ONC-PA today. The ONC has left and rumor has it there might be someone who is STAYING coming in. I hope so.

PA answered all my questions (he is great) and then asked why the scan wasn't scheduled (supposed to be last week). I told him, and he immediately said I was to have the scan, and that the ONC left cryptic notes, so he wasn't able to explain what the ONC was thinking.

In the meantime, treatment as usual tomorrow. FOLFIRI.

The scan will be scheduled for the week of April 29 because I am TRAVELING next week!!!! First I am going to the accepted student open house at the college my youngest will be attending. Then at the end of the week I fly to Boston to visit my oldest daughter. I am SUPER excited!!! I'll fly with my youngest daughter, who will be going to see her friends for the weekend.

So now I'm wondering ... has anyone flown recently with a power-port? Mine is easily visible, and I do have a card they gave me when it was implanted. Any tips on how to get through security? I'm not worried about my little local airport, but Boston? The only meds I will take with me are Colase and Savaysa, and will carry them on. I'll leave the "other" medication home as I cannot take it across state lines. :)
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
12/19/2019 CEA <0.5, CA125 36, Scan no change

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

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

Postby zephyr » Mon Apr 08, 2019 6:22 pm

I've traveled with a power port. No problem. Just tell the TSA rep that you have a power port for chemo infusions. As I recall, they directed me to the "moose" scanner.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Mon Apr 08, 2019 10:36 pm

I travel frequently for work and unless I’m hooked up to a pump, I don’t even mention the port. Doesn’t seem to trip security.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

teresajj1
Posts: 42
Joined: Sun Mar 27, 2016 7:36 pm
Location: Florida

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

Postby teresajj1 » Sun Apr 21, 2019 3:32 pm

Has anyone mentioned or suggested cytoreductive surgery as an option yet?
Dx 3/16 @ 36yrs Stage IIIB
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
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
05/2019 Clear CT
10/2019 2 new nodules in pelvic area/CEA 19
11/2019 6 Rounds of Chemo

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

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

Postby Pyro » Sun Apr 28, 2019 9:04 am

Forgive my ignorance, but aren’t all stage 4 people that cannot be cured (most) technically on palliative care?
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

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

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

Postby MissMolly » Sun Apr 28, 2019 10:02 am

Pyro wrote:Forgive my ignorance, but aren’t all stage 4 people that cannot be cured (most) technically on palliative care?


I am on Palliative Care and can speak to its benefits. My Palliative Care includes a multi-disciplinary team of clinicians. In many instances, clinicians come to me in my home. My immediate family is also included in the process and provided with counseling and 1:1 support.

At its best, Palliative Care is whole person care. It addresses my physical, emotional, and spiritual needs. It helps me live my best life in the face of serious illness.

There is an insightful article by NPR that was published last week that explains Palliative Care. I am not technologically adept and do not know how to provide an Internet link. But here is information on the article to find it:

Source: NPR
Author: Carmel Wroth
Date: 25-April-2019
Title: “A Good Life and a Good Death: What is Palliative Care?”

I found the article spot-on and an accurate portrayal of my experience. The services of Palliative Care have been a blessing for me.
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.

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

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

Postby Pyro » Sun Apr 28, 2019 9:50 pm

https://www.npr.org/sections/health-sho ... ative-care

I guess, to answer my own question, we would qualify for palliative care.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

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

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

Postby nynessie » Fri May 10, 2019 7:42 pm

teresajj1 wrote:Has anyone mentioned or suggested cytoreductive surgery as an option yet?


Yes. However, I am not considered a good candidate. At least, not at this time.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
12/19/2019 CEA <0.5, CA125 36, Scan no change

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

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

Postby nynessie » Fri May 10, 2019 8:00 pm

Pyro wrote:https://www.npr.org/sections/health-shots/2019/04/25/717095214/a-good-life-and-a-good-death-what-is-palliative-care

I guess, to answer my own question, we would qualify for palliative care.


Interesting article. I live in a rural area, and at the time of my diagnosis, no one mentioned palliative care. In fact, no one said the word "palliative" to me. It was almost as if they were afraid of my reaction. I was told, quietly, "I'm sorry, there's no cure." Then was told about the different treatment options, and how we'd start with one and continue on, changing drugs as needed. It was all I had as I started chemo the next morning.
06/2018 KRAS negative for mutation; PDL1 negative, CEA 22.7
07/2018 - 07/2019 -- 5 rounds FOLFOX; 19 rounds FOLFIRI
08/05/2019 CEA 2.9; CA125 13; CA19-9 113
** 08/07/2019 CRS/HIPEC surgery (PCI 25 pre-op; 4 post-op)
12/19/2019 CEA <0.5, CA125 36, Scan no change


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