Started strong, fading fast as caregiver for DH

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

Started strong, fading fast as caregiver for DH

Postby jhocno197 » Tue May 12, 2015 10:58 am

Found out December 17 that DH had a tumor; Dec.18 hospitalized due to colon perforation; supposed to have surgery to remove parts of colon & bladder Dec. 22nd, but could not be done as too massive and more invasive than expected; chemo started end of January (26th?). 4 treatments Folfox, neuropathy was getting pretty bad, so was switched to FOLFIRI, Avastin added. Hubs is 44; we have 5 kids ages 19, 17, 10, 4, and 1. I was handling things ok at first, but these last couple of weeks I can't hold it together very well. Dr has not ever said anything like --number of months, just things like, "It's not good, but we want to fight it;" "I'm not going to bet against anyone;" and a surgeon said dh "won't be going back to work" when asked how long till he could return. Hubs acts like he's going to be healed over the next year. Is it better for him to keep his delusions? Feel like I'm slowly drowning...
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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exaussie
Posts: 618
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
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Re: Started strong, fading fast as caregiver for DH

Postby exaussie » Tue May 12, 2015 11:22 am

Oh I have been there with my son, not husband.
My only advice to you is live for today. Do fun things, spend time as a family. On good days try to get away and be together. If he rebounds then think about work. Plan for the future because that helps the patient be positive.
Ask the Dr what he thinks without your DH in the room. Get second opinion on what the Dr says. And even with this information Drs can be wrong-do not take life timeline too seriously because it can be wrong.
Take family portrait. Take a trip if you can.
And for you my dear, take time for yourself NOW. You are definitely in need of that. Go for a walk everyday, go out with girlfriends once in a while. Unfortunately caretakers have it hard, the patients life is hard, the family life is hard. I am so sorry you are going through this.

Hugs
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Started strong, fading fast as caregiver for DH

Postby skypup » Tue May 12, 2015 12:14 pm

A question for you before I write more: what level of info do you want? Taking some time to get used to your new and devastating situation may be good; knowing all the facts as soon as you can get them may be what is right for you.

So very sorry you and your family are here.

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Rob in PA
Posts: 2005
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Started strong, fading fast as caregiver for DH

Postby Rob in PA » Tue May 12, 2015 12:49 pm

While December 17th may seem like a long time to you as you care for your husband, that is a relatively short time frame in the grand scheme of things. Cancer fighting is a marathon, you'll have your ups and downs but the first several months are the hardest. Stay strong and please send us some more details about your husbands current situation so we can provide additional support and advice.

Best,
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

momof3
Posts: 213
Joined: Thu Sep 13, 2012 8:52 pm

Re: Started strong, fading fast as caregiver for DH

Postby momof3 » Tue May 12, 2015 1:02 pm

Sorry you too are dealing with this.

As Rob said, the first months are the hardest.

We have three kids, 17, 15 and 3 and my husband was diagnosed 2 and a half years ago, stage 4. I remember how strange and difficult things were. Still are, but it's just kind of our life now. But it still feels strange when he's feeling lousy and not wanting to do anything, but as you know with a houseful of kids...life does not slow down.

I've let my husband decide how much he wants to know and one of the first questions he asked the doctor was how long he had. I cringed at that but it's his diagnosis not mine. For what it's worth, he should be gone by now. Doc was wrong.

Personally I don't see the downside of having him think he will be cured in a year..it does happen. My husband has continued to work and I think that has been really good for him.
Husband was 46 when diagnosed stage 4 aug 2012
folfox and avastin ... then surgery april 2013
mets only to paraaortic nodes
Mets to femurs and spine found Nov 2013

andy21
Posts: 376
Joined: Tue Jun 26, 2012 4:07 pm
Location: N California

Re: Started strong, fading fast as caregiver for DH

Postby andy21 » Tue May 12, 2015 1:13 pm

Some initial questions:

1. Initial CEA?
2. CEA after 4 treatments?
3. PET Scan results after 3 treatments
4. Stage, and which organs affected and resectability.
5. Is your DH being seen in Top 20 hospitals, or any ones below are close by?
(http://health.usnews.com/best-hospitals/rankings/cancer)
Caregiver: To 67 Yr father
diag. Stage IV, 5/12, liver mets
6 cycles Xelox/Avastin, Start 06/12
Stage 1 of Two Stage Resection Surgery in Dec, 12. 2nd line fails.
T Cell Trial May-Jul, 2013
Becomes a Heavenly Angel in August, 2013

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Frenchie's Wife
Posts: 959
Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: Started strong, fading fast as caregiver for DH

Postby Frenchie's Wife » Tue May 12, 2015 1:20 pm

Doctors get it wrong more often than you know.
They gave me 6 months. That was over 5 1/2 years ago! I was the poster boy for what NOT to do if you get cancer. Here I am still still on the
road full time in my RV.
He may rebound and prove everyone wrong, just like I am doing now !!
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017

momof3
Posts: 213
Joined: Thu Sep 13, 2012 8:52 pm

Re: Started strong, fading fast as caregiver for DH

Postby momof3 » Tue May 12, 2015 1:26 pm

Hey frenchie...my moms doctors got it wrong by almost thirty years! Not cancer but still...they gave her six months to live close to 30 yrs ago. She too was a poster child for what not to do..smoked, ate crap, didn't exercise. But she was the kindest person you could meet.
Husband was 46 when diagnosed stage 4 aug 2012
folfox and avastin ... then surgery april 2013
mets only to paraaortic nodes
Mets to femurs and spine found Nov 2013

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

Re: Started strong, fading fast as caregiver for DH

Postby jhocno197 » Tue May 12, 2015 1:45 pm

Exaussie, I am so sorry about your son.

Thank you all for your kind words, condolences, and for taking the time to respond.

To answers the questions:
I would like whatever info there is; I've been researching like crazy since we found out. I think it helps me to be as prepared mentally as I possibly can.

Initial CEA before surgery was 12. After 4 treatments was either 54 or 45 (this after having gone up to 81). No PET scan - insurance denied doc's first request for PET scan before starting chemo; doc just had CT done after fourth chemo before starting Avastin & said it showed 'mild response.' Stage 4 due to its extreme 'local' advancement - through bowel & bladder w/perforations, into the abdominal wall. No, we are not at or near any of those hospitals; DH does not want to go anywhere else.

Currently also diabetic due to the steroids given with the chemo.
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

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

Re: Started strong, fading fast as caregiver for DH

Postby jhocno197 » Tue May 12, 2015 3:39 pm

Forgot to add, they did do a colostomy in December when they weren't able to remove tumor because it would at some point cause a blockage.
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

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

Re: Started strong, fading fast as caregiver for DH

Postby midlifemom » Tue May 12, 2015 5:08 pm

Please take care of you! More difficult to do than say, but so important. As the patient, I would love to just have my DH nearby all the time. But, I realize he needs to do things for himself; read, go for bike rides, etc. Only by maintaining his own sanity can he be there for me when I really need him.
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?

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Started strong, fading fast as caregiver for DH

Postby justin case » Tue May 12, 2015 5:20 pm

What you have described is a very exorbitant set of circumstances. I know I'm not able to offer advice, and I doubt most on this board could help you better, than your medical team. I hope things settle down, although it seems your husband has a better grasp, as to his wishes. All you can do is ride it out, and see how the cards turn. There are many who can help you around here,but relying on your medical team, and being there to listen to them, is your best bet. I know there was a place in my brain that refused to hear what the doctors were saying. Sometimes it really helps to have a co- listener, who takes notes.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

User avatar
Sharon Brent
Posts: 288
Joined: Mon Oct 06, 2014 5:19 am
Location: London England

Re: Started strong, fading fast as caregiver for DH

Postby Sharon Brent » Tue May 12, 2015 7:24 pm

Hi,
Well like many others I have my own opinions but Justin Case is right, you need a candid talk with the Medical team.
But remember no matter the report of the Doctors everyone is difference, there are exceptions to the rules like Frenchie.
But having been a care giver to my Dear Husband it's very true that we forget about out own needs, so please look after yourself and be strong, like others have said Cancer is not a sprint but rather a Marathon so pace yourself.
Much Love and Kisses from London
DH, 47yo, Dx Stg IV, mCRC, lvr, lng 1/14, Tx Capeciabine 9 rnds
Children 5 & 1
DH 48th Birthday 6 November in Hospital
Home palliative care on 12 November 2014
Called back to Jesus 4pm 15 November 2014
Life Celebration in Nigeria 8 January 2015

lhawk0730
Posts: 171
Joined: Mon Oct 27, 2014 10:49 pm

Re: Started strong, fading fast as caregiver for DH

Postby lhawk0730 » Wed May 13, 2015 12:22 am

(((hugs))) to you. Take the time for you that you need so you can be there for your DH and kids. Its not selfish at all. It truly is loving because you will the be able to do more for your DH as a result.
Daughter to Mom, age 71
Dx 10/14 RC - T3bN1bM0
Chemoradiation til 1/15
Surgery 2/15
Temp ileostomy
Failed Xelox round 4/15
1 round straight Xeloda 5/15 - discontinued
Ileo reversal 5/15
8/15 more Xeloda


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