Approaching the End...

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Petit83
Posts: 51
Joined: Wed Jul 09, 2014 5:09 pm
Location: Salt Lake City, UT

Re: Approaching the End...

Postby Petit83 » Mon Mar 21, 2016 6:24 pm

Thank you all for your words of support and for reading my lengthy posts.
I have been out of this forum lately because my moms condition has worsen. We decided to peruse for whole brain radiation and things were becoming more and more difficult. She is been experiencing a lot of communication problems until she went silent on Thursday. Later over the weekend her balance was off and her body was leaning towards the right side as well as her head..like she had lost all her strength. I decided to call the doctor because i didn't thinks these were sings of whole brain radiation. They sent us to the emergency room for stroke. She was admitted immediately and a ct scan revealed that the tumors in her brain were bleeding. The doctor assured me that this is not a result of WBR but the cancer. They are doing and an MRI to determine the extend of the damage and kind of help us make decisions. They told us that she will stay at the hospital.
I kind of want to take my mom to home and let her die there. But at the same time don't know if we will be able to handle her care. I will post more when we get more results from the MRI.
Feeling sad and that the end that I was expecting for my mom hasn't been as peaceful.
Mom 62 dx IV - 10/13 multiple liver mets
Folfox + Avastin 12 cycles 06/14- tumors dead/ shrinkage!
5fu+ Avastin 2 rounds 08/14 - 09/14 - one single tumor growth
Folfiri 09/14
10/14 HAI pump- Tumors Shrinking
03/15 brain surgery 1 met SRS
11/15 brain scan clear after 2nd SRS. Liver mets shirnking
02/16 5 new brain mets. Liver growth

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

Re: Approaching the End...

Postby HopeForJesse » Mon Mar 21, 2016 6:50 pm

So sorry. Big prayers for peace and guidance for you and your family.
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!

Snapfish
Posts: 50
Joined: Mon Oct 05, 2015 10:42 pm
Location: Washington, DC (dad in Houston, TX)

Re: Approaching the End...

Postby Snapfish » Mon Mar 21, 2016 7:02 pm

Saying prayers for you and your family.

-snapfish
Daughter to 70-year old father dx 2015-Sept-28: Stage IV adenocarcinoma with signet ring cell features
Sigmoid colon primary with peri mets
MSS; RAS wild-type; mutation in exon 8 of p53

2015-Oct: Began FOLFOX-6 at MDA; CEA was 15.1 at baseline
2016-Feb: CEA 5.7; 10 full rounds of FOLFOX-6 completed
2016-Mar-3: Began FOLFIRI
chemo, chemo, chemo
2017-Jan: Total of 29 cycles of chemo down. Back on FOLFOX again after FOLFIRI fail. CEA now 118.

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Approaching the End...

Postby ams5796 » Mon Mar 21, 2016 7:04 pm

I'm so sorry. You're in my thoughts.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Approaching the End...

Postby chrissyrice » Mon Mar 21, 2016 8:27 pm

I know how hard it is to let go of a loved one. You are so brave and have fought so hard for her to get better.

You and your mom did everything possible to make sure she would not suffer now.

Comfort and peace and discernment in the days ahead.

Chrissy
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

Nik Colon

Re: Approaching the End...

Postby Nik Colon » Mon Mar 21, 2016 8:58 pm

I am so sorry :( hugs

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

Re: Approaching the End...

Postby KElizabeth » Tue Mar 22, 2016 11:05 am

I'm sending prayers for your strength in the days ahead. Hugs.
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

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ziggymonster
Posts: 538
Joined: Tue Feb 05, 2013 3:23 pm
Location: California

Re: Approaching the End...

Postby ziggymonster » Tue Mar 22, 2016 12:39 pm

I am very sorry to hear this, hoping for comfort for both you and your mom.
DX advanced prostate cancer 2002
2014 still fighting mPca , failed surgery, radiation, hormone
DX Stage IIIa Rectal Cancer 12/12 1 of 12 nodes +
LAR permanent colostomy 1/13
Folfox 2/13 - 7/13 clear CT CEA 1.2
7/14 liver met chemo the resect in Oct
6/15 2 pos lung mets watching for now

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Approaching the End...

Postby jhocno197 » Tue Mar 22, 2016 3:20 pm

I am sorry.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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

Re: Approaching the End...

Postby jortego128 » Tue Mar 22, 2016 5:42 pm

Very sorry as well. Spend as much time with her as you can and help her in any little way possible. I will continue to pray for yall.
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

Petit83
Posts: 51
Joined: Wed Jul 09, 2014 5:09 pm
Location: Salt Lake City, UT

Re: Approaching the End...

Postby Petit83 » Tue May 03, 2016 2:05 pm

It has been over a month since my mom left the hospital with only " days or few weeks left" to live. It certainly has not been easy but we have been blessed with her presence still here with us.

I was reading the other day in this forum how little we all know about those last weeks of life and how difficult is to find people that you can relate in this phase since you don't want to discourage any one who is still on treatment. But If you would like to follow, I will try to share with you as my time and energy permit. Perhaps I can help someone who is struggling walking a similar path. I must say thou that many of her symptoms are unlikely to happen to many of you since the most affected part is not her liver but her brain.

This last site has been the most challenging for our houspice nurses to deal with. They say that since it effects are so unpredictable and any part of the body can be affected it is difficult to foresee what will be next.
My mom is not walking since WBRT and has lost her ability to communicate since then. She has had something called aphasia palalia where she gets stuck on a word and repeats is over and over for about 8 minutes straight. She gets very agitated and tired. She gets anxious and desperate. We do too! The fact that she is not able to communicate diminishes our ability to give her the best care. We don't know where her pain is, is she is uncomfortable on the bed, if she needs to use the restroom, or wants to drink. We are in the guessing game most of the day when she moans. This breaks my heart into pieces!

Another difficult thing has been to find the right balance between her pain meds and her ability to be lucid and try to communicate at a certain level. Or the right balance between the pain meds and the horrible constipation they cause. she went constipated for about 5 days and it was awful! We are now in max doses of laxatives after we figured what was the right amount of laxativeS and medication for her.

Besides the medication and all the daily care bathing, changing sheets, making shakes and moving her around her bed and the bathroom, there is the emotional Side. Fist I'm glad she is home and not in the hospital. We have been able to spent time with family and friends without restriction. She feels comfortable most of the time and all
this is a blessing from God. Our friends have brought us dinner every day for the last month! There are so many good people around. I can't complain, I just wished this will make me feel this process is easier. Sometimes I feel I'm ready to let her go, some other times I think I'm not. Like today... But I miss her so much already..
Mom 62 dx IV - 10/13 multiple liver mets
Folfox + Avastin 12 cycles 06/14- tumors dead/ shrinkage!
5fu+ Avastin 2 rounds 08/14 - 09/14 - one single tumor growth
Folfiri 09/14
10/14 HAI pump- Tumors Shrinking
03/15 brain surgery 1 met SRS
11/15 brain scan clear after 2nd SRS. Liver mets shirnking
02/16 5 new brain mets. Liver growth

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

Re: Approaching the End...

Postby KElizabeth » Tue May 03, 2016 2:35 pm

Hold in there. This period is so rough on patient and family alike. Try to get some rest and remember you are doing an amazing job caring for your mom. Your words remind me of my experience caring for my own mother in her last days. It's such an important time to spend together but so challenging.
Thanks for sharing with us.
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

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Approaching the End...

Postby midlifemom » Tue May 03, 2016 4:19 pm

Thanks for sharing Petit.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?


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