end??????

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Matthew
Posts: 181
Joined: Sun Jan 22, 2012 4:04 pm

end??????

Postby Matthew » Sun May 27, 2012 10:27 pm

This past Friday my wife said she had really bad abdominal pain (this is after visit to onc who agreed with her to suspend FOLFOX until she- wife - got stronger) and AFTER a home physical therapy visit! - in late afternoon. SHe THOUGHT she had taken her 2mg dilaudid - turns out she didn't - mother in law didn't know - like an idiot I went to the supermarket...

Anyway, onc suggested "upgrading" home health to home hospice -nothing final just better pain management - this utterly awful horrible woman from hospice shows up - total a-hole (sorry) after like five mins suggests to my wife that she needs in patient pain management set-up at the hospice because of her 9-10 pain - again remember guys, she THOUGHT she took the dilaudid but she didn't.

She agrees - so I drive her to the death-house (sorry hospice) and she's lucid Friday, and even Sat am- then she still says she's in pain - gets like 70mg of morphine - zombieland - gets put on morphine pump at 14mg/hour...then around 1AM this morning I have long talk with nightnurse - end result pump slowed to 7mg/hour - at 8am when dr #2 comes in, changed to 4mg/hour...head doc comes in...says she's got a WEEK left maybe...


God, what the heck - from Friday to today and one week? She's still not fully lucid - doc/nurses tell me because liver isn't filtering well...and morphine...'

I am devestated...ONE WEEK????? Can this be true? Talk to onc on phone...he says yes it's POSSIBLE but he can't say for sure...but he thinks hospice doc is right...

So we're home with hospice help...I don't understand this - how can the disease progress this fast...I can't believe this and I'm still wondering if this can be right....

And last week wife and I were discussing what she wants - private cremation and a memorial service afterwards...so I'm sitting here emailing funeral homes...like a robot. I'll guess I'll see tomorrow if her mind returns...
DH to WONDERFUL wife (43 yrs old) of 21 years!!!
Dx 12 Jan 2012
Hospital - 13 Jan 2012 - 26 Jan 2012 removed sig colon 8cm tumor/colostomy
3.5cm met to liver
a few 1 to 2 mm mets to lungs
FOLFIRI - Feb 13, 2012 - add Avastin -mid-March 2012

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: end??????

Postby Badass » Sun May 27, 2012 10:36 pm

Matthew, how confusing and shocking this all is. Why the oncologist said it wasn't the end, then said it probably was... I hope you get some lucid moments with your wife. My heart is with the two of you and your family.
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

Laurettas
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Joined: Tue Jun 21, 2011 9:49 pm

Re: end??????

Postby Laurettas » Sun May 27, 2012 10:45 pm

Matthew, I am not a medical person at all but these are some of the questions that came to mind as I read your story:

Has her cancer progressed from what you have in your signature? Sounds like pretty minimal involvement from what you have recorded.

What is causing the intense pain? Has she been on pain meds for quite a while? Did you let them know that she had missed a dose of the pain medication?

Did they do any scans or anything to see if something inside was causing the pain like a bowel perforation or obstruction or something?

Why do they think she only has a week to live? What is endangering her life?

Hang in there, ask lots of questions and be an advocate for finding out what exactly is going on.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

Matthew
Posts: 181
Joined: Sun Jan 22, 2012 4:04 pm

Re: end??????

Postby Matthew » Sun May 27, 2012 10:59 pm

lauretta thanks for your reply - yes the cancer progressed during FOLFIRI - liver is filled with masses and peritonal tumor that was 4cm accross is now 10...BUT that was April 27 - another scan 2 weeks later shows NO change....

So what the heck happened....is the liver failing?
DH to WONDERFUL wife (43 yrs old) of 21 years!!!
Dx 12 Jan 2012
Hospital - 13 Jan 2012 - 26 Jan 2012 removed sig colon 8cm tumor/colostomy
3.5cm met to liver
a few 1 to 2 mm mets to lungs
FOLFIRI - Feb 13, 2012 - add Avastin -mid-March 2012

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Guinevere
Posts: 3358
Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: end??????

Postby Guinevere » Sun May 27, 2012 11:14 pm

I'm so sorry, Matthew. I can't help with knowledge of how this danged disease progresses but I can pray you get some better answers which I'm doing now.
God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

Laurettas
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Joined: Tue Jun 21, 2011 9:49 pm

Re: end??????

Postby Laurettas » Sun May 27, 2012 11:27 pm

I truly don't know what is going on, Matthew. Only your onc would be able to tell you if the degree of cancer she has would be causing all of these symptoms.

The one thing I would repeat from a comment on one of your other threads is to have your wife's potassium levels checked. My husband had an aunt that appeared suddenly totally senile and they finally figured out it was a potassium imbalance. She was fine for years once they got her levels up again.

I am so sorry that your wife is going through all of this. In her place, I can imagine that I would be totally overwhelmed with so many things happening all at once and the news so often being negative. As caregivers all we can do is walk with our spouses and shoulder as much of the burden as they ask us to bear.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

RixInPhx
Posts: 1904
Joined: Fri Oct 08, 2010 11:53 pm
Location: Phoenix

Re: end??????

Postby RixInPhx » Sun May 27, 2012 11:57 pm

So sorry for this lousy turn of events.
It's my understanding that massive liver failure can indeed progress very quickly.
It can also cause a kind of ammonia poisoning (temporary) that causes confusion in the patient; simple meds can reverse this.

I don't see any mention of ANY tests or scans since this "...really bad abdominal pain.." episode on Friday.

Are none of the docs at the hospice interested in her actual condition, or do they *assume* that because she was sent there, her medical team had already made a decision relative to condition, prognosis, imminent death??

Have you consulted with her onc since Friday?
If not, I would do so now or first thing in the morning.

Best of luck advocating for her proper care,
-Rick
M 61, Dx 6/10 CRC st 4, unknown primary CEA 843
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192

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karin
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Facebook Username: Karin Tobin Fagner
Location: Austin, TX

Re: end??????

Postby karin » Mon May 28, 2012 12:13 am

Matthew,
I'm so sorry to hear this news! Is ther any way that she can have surgery...does she have a colostomy?
Karin
Karin
BFF dx'd June09 w CRC & peritoneal mucinous carcinomatosis @ age 40
She beat cancer for 20 months!

Matthew
Posts: 181
Joined: Sun Jan 22, 2012 4:04 pm

Re: end??????

Postby Matthew » Mon May 28, 2012 3:03 am

Thank you guys all of you
..! Problem also is that her mother agrees with whoever she sees last, and now just makes no effort whatsoever... the deathhouse...hospice doc made his diagnosis based on her official diagnosisand his "experience". Onc on call who knows us said on phone oh it can be...look inpatient hospice I think wants people to die... last bloodwork normal may21... although cea doubled since April... I'm going to try to reach her primary tomorrow... onc closed until Tues but I'll see if by chance ours is on call...

Of course she hadn't eaten but barely last few days and her mother wants her to "go"... now she's too weak to even walk to bathroom...
If I had the presence of mind to suggest last Friday our local hospital on past convinced we would not be here...
DH to WONDERFUL wife (43 yrs old) of 21 years!!!
Dx 12 Jan 2012
Hospital - 13 Jan 2012 - 26 Jan 2012 removed sig colon 8cm tumor/colostomy
3.5cm met to liver
a few 1 to 2 mm mets to lungs
FOLFIRI - Feb 13, 2012 - add Avastin -mid-March 2012

limbo08816
Posts: 81
Joined: Tue Jan 17, 2012 5:24 pm

Re: end??????

Postby limbo08816 » Mon May 28, 2012 7:45 am

I have no advice. I just wanted to say that I am sending strong thoughts and virtual hugs.
I agree with advice to seek a second or even third opinion.

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Nickmark59
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Facebook Username: nickmark59
Location: Pittsburgh Pa.
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Re: end??????

Postby Nickmark59 » Mon May 28, 2012 9:13 am

So sorry to hear what your going thru I hope they are wrong. I do not know about Colon Cancer taking over this fast

There are however certain other cancers and cases where the cancer is very aggressive and I know of several people it has happened to. Including a friend who had very aggressive prostrate cancer which is usually very treatable. I would definitely get another opinion. Hoping for the best.
CRC- IV 7-th yr Survivor -5 rectal tumors 1 bleeding with mets to liver
Rad. 36 treat.
with 6 Chemo 2-Ox.- 4 Fol.
surgery 15 hrs to resect colon and liver- Feb 08
follow up 6 chemo Folfox
www.darkinvestigations.blogspot.com

Surroundedbylove
Posts: 3126
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: end??????

Postby Surroundedbylove » Mon May 28, 2012 9:56 am

I am so sorry to hear this turn of event Matthew. While only your wife's doc can say what is going on, my understand is that with a large tumor load you can have changes very quickly. Working with hospice can also be new and different too and that sound challenging right now as well. One of our members, Surfingon, has a blog and excellent information about working with hospice. YOu may want to search the members and find the link to her blog or to some of her posts.

SBL
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

Matthew
Posts: 181
Joined: Sun Jan 22, 2012 4:04 pm

Re: end??????

Postby Matthew » Mon May 28, 2012 10:38 am

Thank you all very much...I can't get a hold of her oncologist until tomorrow but tomorrow I will also try tomorrow get her primary care involved...

But nurse who did a decade in er out here today also said as much and yet yet yet....
DH to WONDERFUL wife (43 yrs old) of 21 years!!!
Dx 12 Jan 2012
Hospital - 13 Jan 2012 - 26 Jan 2012 removed sig colon 8cm tumor/colostomy
3.5cm met to liver
a few 1 to 2 mm mets to lungs
FOLFIRI - Feb 13, 2012 - add Avastin -mid-March 2012

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Gaelen
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Location: CNY
Contact:

Re: end??????

Postby Gaelen » Mon May 28, 2012 10:42 am

Matthew, I know this has got to be overwhelming - but fighting the doc's advice and the process is not necessarily going to best serve you or your wife. As spouse, you are the person to whom docs will turn as the primary caregegiver. Until this situation is fully explained to you, you do need to stay with your wife, talk to all the docs, and clarifiy exactly what is happening. It's not for your wife's mom to be having that interaction unless she's the named health care proxy.

Yes, things CAN change "that fast." Even faster, sometimes. And the changes can be scary, even when you think you're prepared. For the las 2 days I've suddenly had trouble standing and walking, which means I can't really be safely alone. I have a friend from the other side of town coming to make/bring me some food, and I've move my pain meds to my bedside. The visiting nurse comes tomorrow. After that, the next step is a nursing home (hospice bed there. It's too fast, but it's gonna happen with or without my cooperation.

One favor I'd ask as someone staring at end-of-life - please stop calling hospice "the death house." It's a tough place to be, but despite my own issues with hospice, they CAN help spouses and families deal with this part of the process. Reach out to the counselors at the facility, and let them help you. Even on a weekend or holiday, these services should be available 24/7. Take advantage of what they offer, and it will better enable you to help the docs take care of your wife.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

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mlibertone
Posts: 261
Joined: Wed Nov 02, 2011 12:56 pm
Facebook Username: Michelle Libertone-Cook

Re: end??????

Postby mlibertone » Mon May 28, 2012 11:56 am

I have no advice. Just sending hugs, love and prayer to you, your wife and your family.
Michelle, Daughter of Mark
Dad DX: 7/25/11 Kras mutant
Stage IV RC mets to liver
10 rounds of Xelox 8/11-5/12
Xeliri 6/12/12 added Avastin
3/13 radiation, hip met
4/12/13-hospice
My beautiful angel 9/16/13 @ 3:23pm
I love you daddy! I'll see you again!


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