Approaching the End...

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

Approaching the End...

Postby Petit83 » Wed Feb 17, 2016 3:40 pm

We had the hospice talk by mom's oncologist this morning. He asked her to hold on to whatever she believed. She believes in God and so does he. They both prayed holding hands. Later he hugher her and cried with her. It was sad but peaceful. He was not a doctor today. He didn't mention anything clinical related. He just went to talk about hospice. It was a very compassionate appointment, but with a lot of questions about the future. The many unknowns that trouble us son much!!
For instance, my mom is scared, because she doesn't know the end will be, how much pain she will have to endure. we are all scared! Oh how much I hate this desease!! That eats us all alive little by little each day.
AND We are still left with the desicion to whether or not to do Whole Brain radiation to alivate the severe nausea and diziness caused by the 9 tumors she has. the medication so far to treat them only makes her sleep the ENTIRE day. That is not obviously QOL. But I'm afraid of the WBR side effects
If you have any thoughts regarding your experience with the end of life of a loved one and what I can expect, please share. Or your comments on wether do WBR. All is greatly appreciated it.
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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H is for Hawk
Posts: 103
Joined: Wed May 20, 2015 4:51 pm
Location: eastern Pennsylvania

Re: Approaching the End...

Postby H is for Hawk » Wed Feb 17, 2016 4:21 pm

Others have commented that whole brain radiation has severe side effects, like personality changes, and lethargy.
Last edited by H is for Hawk on Wed Feb 17, 2016 4:25 pm, edited 1 time in total.
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine

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Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: Approaching the End...

Postby Cowgirl918 » Wed Feb 17, 2016 4:24 pm

I am so sorry for you and your family. Unfortunately I am not the one with the technical answers you are seeking today. I know that others will fill that gap. I am the one here to offer support and prayers, prayers now for mercy and peace. I feel your pain having lost my Father on the same journey. I believe that if you pray for the answers and listen to your inner voice, they will come. All of us are here to listen and support you. As a mother facing many health issues, I can tell you that what I want and need the most from my adult children is their love, their comfort and their presence. You are a blessing to your Mom at all times. And that is the very best medicine. Take Care
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

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

Re: Approaching the End...

Postby jhocno197 » Wed Feb 17, 2016 5:25 pm

Hospice should be able to manage her pain very well.
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

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

Re: Approaching the End...

Postby chrissyrice » Wed Feb 17, 2016 7:49 pm

I am so sorry for you and your mom.

Sounds like her doctor is a very compassionate and hospice will be able to help with the fears and pain management.

You are in my thoughts and prayers.

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

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

Re: Approaching the End...

Postby jortego128 » Wed Feb 17, 2016 9:49 pm

Im very sorry for y'all. Im in a similar situation with my mom, very few options left. Spend as much time together as possible, laugh with her, read the bible together, love her with all your heart.
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 » Thu Feb 18, 2016 1:14 am

Thank you all for your kind responses, your words of encouragement and the empathy you show me.
My mom is having a hard time with her oncologist not wanting to treat her and she fears the cancer will take over her entire body. She just shared that with me tonight after a long day of much reflexion. I believe it is in great part because back home In South America, where we are from, hospice care is very unknown and palliative care is only given in 3rd level hospitals. But nothing like a home care. I guess she felt today like she was just abandoned. Left alone to die. I'm trying to research more on hospice programs and ease her.
Tomorrow we are meeting the radiation oncologist, to do the map planning of her brain for whole radiation, and start WBR next Tuesday or so.but we are not convinced yet. We are playing by ear. Please, if you are a believer ask God to show us what to do. Right now, I don't even process what is right or wrong.
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

Nik Colon

Re: Approaching the End...

Postby Nik Colon » Thu Feb 18, 2016 2:51 am

Praying. Hugs

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

Re: Approaching the End...

Postby KElizabeth » Thu Feb 18, 2016 9:06 am

I think a home care hospice is a good choice, but do some interviews to make sure to find a provider that meets your needs. They will want to stike out non COL meds from her meds list right away, but you have a right to go over that before accepting. For instance my mother took methotrexate for RA pain management and foliate on her off days to manage it's effects. They wanted to cut it out of her regime, without understanding her reason for taking it. The same with her A-fib drug, but I said it eased her anxiety, because when she went into A-fib she went into a panic attack.

We waited too long for hospice, so it was pretty quick for us. Just a few months. In that time we talked about her childhood and her wishes for her family. We talked to old friends and checked off the boxes for long overdue conversations.

We had a few good rally days just before my mom passed and we said our goodbyes and prayed together.
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

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

Re: Approaching the End...

Postby Petit83 » Sat Feb 27, 2016 12:42 pm

Thank you for the good tips about hospice on medications, cathetization, etc.
We decided to do WBR because her dizziness and nausea were unbearable. After the 4th treatment now, she feels better regarding her dizziness. But her nausea is still there because of the radiation. I hope it gets better the weeks after she is off treatment. However, the decadron is causing so MUCH of anxiety, that the doctor yesterday said the doses of Ativan for anxiety are reaching hospice level and in his words : I don't want to keep your mother the last days of her life in radiation treatment", " I don't want you to keep longer in radiation if she is not coping well with the side effect". So after the doctors push for WBR, now, we are left to decide whether to continue the treatment or go to hospice. I want to go to hospice now, but some people in the family think it is better to finishe radiation. And my mom is not even able to make this decision herself now. All is so stressful!
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

SaveMyArchie
Posts: 306
Joined: Tue Jan 19, 2010 10:14 pm

Re: Approaching the End...

Postby SaveMyArchie » Sat Feb 27, 2016 7:33 pm

Hi Petit83,

How wonderful for you to be there with her for her appointment. I can't comment on localized or whole-brain irradiation since we didn't go that route (brain met occurred after long-time stable lung mets and we were referred straight to hospice with steroids and pain meds). The steroids kept brain swelling down, which kept her lucid and coherent really well but I don't know how many brains mets were there (pretty sure one but I don't remember hearing a number).

Like others are saying, there's a lot of questions with times like these, one of the main ones being whether interventions are going to prolong life or delay death. Since the hospice conversation has taken place, it sounds like the radiation is being considered only for comfort measures and palliative care. I'm glad the WBR has given some relief there and I'm sorry that there's so much uncertainty around all this, especially with the difference in opinion of whether/when to stop.

All that aside, please please please make sure to take some time here to get some quality "just being there" time, even if it means having each one of you rotate through the room to have true alone time if you don't all want to be there together. You have managed lots of medical/family/technical for a while and it is always a good idea, especially now, to ensure you have some plain old sit-down time next to her too.

Strongest thoughts,
Steve
51 @ dx (I'm her son - call me Steve)

8/12: referred for hospice
7/12: significant progression
4/12: Vectibix
11/10: recurrence; XELIRI+Avastin 'forever'
7/10: NED; lingering CIPN
1/10: FOLFOX
12/09 - removed 19cm sigmoid colon/prox rectum; 5/13 nodes

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

Re: Approaching the End...

Postby Petit83 » Tue Mar 01, 2016 7:14 am

I'm glad we had the weekend to discussed as a family wether to continue with WBR. In trying to keep her involve, her only response was: "please, don't ask me all these questions" I gues with the brain mets we cannot expect much involvement in deciding her treatment plans.
We decided to continue with WBR taking into consideration that she has at least 9 visible tumors a month ago and they were causing much damage already to her vision, judgment, speaking, balance. We thought that with out the radiation she would end up with other worse, unexpected challenges (confusion, not been able to walk, no control of bowel moment, etc)

Steve: I wanted to asked you how much steroids did your mom get? Like a dosage every day? Our fear with going into hospice is that they will treat my mom with steroids until her last day and my mom does horrible with that drug. Drs have reduced her dose from 8 to 4 mg now and she is doing much better. But she felt she was going to die of a heart attack, panic, and shortness of breath right at the moment. After seen this, we were afraid of hospice treating her with steroids. Any thoughts from your experience? Thank you for sharing with me.
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

Delinda2
Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: Approaching the End...

Postby Delinda2 » Tue Mar 01, 2016 10:42 am

I'm so sorry you, your mom, and your family are going through this. I lost my beloved mother to breast cancer many years ago when I was barely 18. (45 years??!!??) In those days people didn't openly talk to cancer patients. Treasure the time just sitting quietly with her or letting her know how loved she is. My heart hurts for you at this difficult time. Hugs. XXOXO, Delinda
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."

alphagam
Posts: 203
Joined: Tue Jun 14, 2011 10:48 am
Facebook Username: Kathy Maine Ruess

Re: Approaching the End...

Postby alphagam » Tue Mar 01, 2016 3:30 pm

Please just talk with the hospice people. They will be able to answer all your questions.

Too many times, people wait too long to bring in hospice. Again, please just talk with them and make a truly informed decision, as hard as that might be.

My husband and I have gone through this process with all four of our parents. We have learned a lot.

Our thoughts and prayers are with you
Dx Feb 2010 4 cm tumor, just inside rectum
EUS stated T3 tumor
2nd opinion, need better path
Mar 2010 transanal surgery. Surgery by board certified CRS found tumor only in lining
6 exams of surg site, 3 PET, 3 scopes laterNED.
Scope in Mar2015, clean colon
Next scope/test in 3 years

SaveMyArchie
Posts: 306
Joined: Tue Jan 19, 2010 10:14 pm

Re: Approaching the End...

Postby SaveMyArchie » Wed Mar 02, 2016 11:22 pm

Sorry, I missed the part about the steroid sensitivity. My mom did beautifully on decadron but had very unusual effects with benadryl (not a steroid). As others have said, focus on the hospice team and make very sure that they are aware of her decadron sensitivity. They will handle it from there. You are off medical duty -- this was hard for me to hear at the time because it made me think there was nothing else for me to do until I realized that I could sit there and just be present and be there with her and not the disease in her body. This is not giving up, this is diving right in to be there with her.

Be very careful with the time you have now. Now more than ever is the medical side of things beyond anyone's control, so it's that much more important that you exercise the control you do have and that's over how you spend this time. You did a very good thing by trying to keep her involved in the WBR decision and her response tells me she has given the family permission to make these decisions. I'm not always the best with words so I want to refer you to responses I received when I was where you are now (Bev G's responses always hold a special place in my mind and heart!):

viewtopic.php?t=35138
51 @ dx (I'm her son - call me Steve)

8/12: referred for hospice
7/12: significant progression
4/12: Vectibix
11/10: recurrence; XELIRI+Avastin 'forever'
7/10: NED; lingering CIPN
1/10: FOLFOX
12/09 - removed 19cm sigmoid colon/prox rectum; 5/13 nodes


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