Thinking of Hospice Care

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Rikimaroo
Posts: 430
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Thinking of Hospice Care

Postby Rikimaroo » Mon Aug 22, 2022 5:09 pm

Hello Everyone,

It's been a long journey alot of fighting and just overwall rough living. There have been good times, great times, sad times, cancer symptom times. At this point I am debating quitting chemo, my cea was 175 and just jumped up to 308, means cancer getting more resistant to the chemo. It's just a matter of time. I am thinking of enrolling in hospice care, but will stick to one more appointment for chemo, not to do it, but to do blood work etc, cause they stop that when you sign up for hospice care.

I thought things were going to work out, but the pelvic tumor is just a problem and causing me to pee blood clots , hurts to pee, mucus coming out of my rectal pouch that is there, just an uncomfortable life. I weight 123 LBs and thats all because of chemo and malnutrition. I use to weigh 218. I am going to probably stop the chemo and just enjoy my life with my family as long as I can without the symptoms of treatment.

Any advice would be greatly appreciated on hospice care.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

User avatar
beach sunrise
Posts: 694
Joined: Thu Mar 05, 2020 7:14 pm

Re: Thinking of Hospice Care

Postby beach sunrise » Mon Aug 22, 2022 8:04 pm

Hi Riki, I believe we all think about it from time to time. When chemo drags you down lke what you are experiencing I can see that quality of life becomes more important than chemo. Hospice isn't what it use to be from my experience with my dad going into the program. It has come a long way with putting the patient first with the persons quality of life.
Have you looked into any different trials or off label treatments that wouldn't be so harsh on the body?
Thinking of you. You had my heart from day one. Much love to you!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

MadMed
Posts: 174
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Thinking of Hospice Care

Postby MadMed » Mon Aug 22, 2022 8:36 pm

Hi Riki,
Sorry things have gotten this rough. I think we all have a breaking point where the pain must stop. you are looking at this with the right perspective, getting some quality time is our goal, all of us. My thoughts are, one more scan to check the effect of treatment. CEA goes up during chemo, and I’m still evacuating mucus since my treatment. I think we all respect the fight you put forward, if it’s not working, and there’s no path forward, then having a more quality time, on your terms is all any one of us can hope for.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

User avatar
CRguy
Posts: 10396
Joined: Sun Feb 10, 2008 6:00 pm

Re: Thinking of Hospice Care

Postby CRguy » Mon Aug 22, 2022 11:52 pm

Rikimaroo wrote:.....and just enjoy my life with my family as long as I can without the symptoms of treatment.
Any advice would be greatly appreciated on hospice care.

I truly believe you just gave us, and yourself, the best advice any of us could hope for.
Live life with your family.

There is no more you can receive, than the love from those who love YOU
... and those who you love.

While it guts me to read your post, I KNOW
You will make the best decision for YOU and your loved ones.

Always know you will continue to be here with us
WE will always be here for YOU

Love Peace and Harmony
On the Journey with you my friend
PM me anytime

Always on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
15 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

utahgal7
Posts: 90
Joined: Fri Sep 11, 2020 12:04 pm

Re: Thinking of Hospice Care

Postby utahgal7 » Tue Aug 23, 2022 8:11 am

Hey Riki,

I had been thinking about you recently. You have fought so hard and for such a long time. Chemo takes an enormous toll on the body and when it stops working, other choices have to be made. I want to just add to the comment by beachsunrise. Hospice has greatly evolved over the years. When my dad went to hospice in Jan. 2019 (stage IV colon cancer), the hospice staff was amazing. My dad had better pain control in hospice and less anxiety as well.

I want you to know that you have been an inspiration to the members on this forum. Your will and determination to keep fighting through it all is astounding.

All of us here on the forum are here for you.

Please let me know if I can do anything for you and your family.

Your friend,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung

User avatar
Jacques
Posts: 607
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Thinking of Hospice Care

Postby Jacques » Tue Aug 23, 2022 8:57 am

Rikimaroo wrote:... Any advice would be greatly appreciated on hospice care.

Hi Riki,

I'm very sorry to hear that you are now at the hospice decision point. What I would suggest is that you do a very thorough examination of whatever hospice providers you are considering, because hospice providers are not all the same.

Are you looking at home-hospice, or at hospice services at a nearby hospice facility?

Here is some information on finding a suitable (and hopefully board-certified) hospice provider:

https://www.floridahospices.org/hospice-palliative-care/about-hospice/choosing-a-hospice/
.

Rikimaroo
Posts: 430
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Thinking of Hospice Care

Postby Rikimaroo » Tue Aug 23, 2022 9:28 am

Thanks so much for the lovely inputs, I appreciate and love you all.

It's so strange because these last 4 rounds of Folfiri seems to have helped a bit with the primary local tumor. I am still trying to figure things out and work with my 2nd opinion doctor and maybe get me in a trial, I don't want to just give up. I am a bit aggravated feeling like i have no where to turn too, but primary oncologist seems to care but seems to be sketchy that there are more options. I feel like leaving him sometimes, but I think he is experienced and maybe that is why he comes across at like its going to be a lose lose battle at this point you better off just enjoying life the fullest and die peacefully in your sleep.

I know the other oncologist in UM has options and I reached out to him.

I will keep you guys posted.

Thanks,
Rikimaroo
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

MadMed
Posts: 174
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Thinking of Hospice Care

Postby MadMed » Tue Aug 23, 2022 10:05 am

I am really glad to hear you're getting second opinion and checking for trials. I was thinking all night about your weight problem, when I was on chemo, they gave me prednisone. That made me gain weight and strength, I think this would help you get some strength. Sorry, throwing everything at this seems like it would make sense.
Are there any surgical options ?
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

Rikimaroo
Posts: 430
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Thinking of Hospice Care

Postby Rikimaroo » Tue Aug 23, 2022 11:23 am

Currently no surgical options. The plan was to do 6 rounds (did 4 so far), the good news is I do eat and gain some weight back after the chemo wears off. I do have an appetite. I also have low energy, strength so we working on getting a wheelchair even though I have no issue walking, my wife insists. The only thing that is currently discouraging me is the CEA jumped on FOLFIRI which is never has done, and hey it could be a false or a misread.

Will keep you guys posted on next treatment meeting what we are going to do. If I need to postpone for another 3 weeks to gain more strength then so be it, but if the cancer is becoming resistant to the Chemo then what is the point.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

utahgal7
Posts: 90
Joined: Fri Sep 11, 2020 12:04 pm

Re: Thinking of Hospice Care

Postby utahgal7 » Tue Aug 23, 2022 11:57 am

Riki,

Would Lonsurf be an option for you?
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung

Rikimaroo
Posts: 430
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Thinking of Hospice Care

Postby Rikimaroo » Tue Aug 23, 2022 1:13 pm

I don't think it is because my oncologist would of brought it up, but I will ask him when I see him on 9/7.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Claudine
Posts: 727
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Thinking of Hospice Care

Postby Claudine » Wed Aug 24, 2022 10:07 am

Oh Riki that first post made me so sad :cry:
But, it doesn't seem that you are completely out of options yet, and like Jacques said, it's not a bad idea to look into exactly what hospice care would entail.

This summer my dad ran into a friend who's been fighting cancer for years (I'm not sure which type though); it went like this:
"Daniel, I told my oncologist I was done with chemo. I'm sick of it, can't handle the side effects anymore. He said: Mr Vincent, you're going to die. I said: doc, we're all going to die! And look at me, sure, I've got a tumor the size of my fist, but here I am grocery shopping, enjoying every day to the maximum! Maybe I'll be gone next month, but I don't regret my decision"
I thought that was such a great attitude...
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; reversal 09/22;
L2-L3-L4-L5 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri + Avastin 03/19 - 01/20;
adjuvant chemoradiation (Xeloda) 06/22

Sunnycd
Posts: 83
Joined: Fri Feb 26, 2021 10:36 am

Re: Thinking of Hospice Care

Postby Sunnycd » Fri Aug 26, 2022 7:27 am

I haven’t been here as often but I still log in to check and hoping for good news from so many that I feel I’ve gotten to know in the last 1 1/2 year. And Riki, you are one of them. I have been an avid reader of your posts, specially as I was managing my colostomy and reversal. There is not a lot of knowledge or insights I can share, except that I am here rooting for you and hoping you will beat this thing.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
MSS, RAS/RAF wild, PIK3CA mutant


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