Crappy crappy timing with no good choices

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LeighB
Posts: 41
Joined: Sat Nov 24, 2012 10:02 pm

Crappy crappy timing with no good choices

Postby LeighB » Thu Sep 18, 2014 11:03 pm

So my dad's been in the hospital now for 5 days. Still unable to stand due to sharp shooting pain that completely immobilizes him. We've learned that it is because of his bone mets on the spine. One in particular is pressing on the spinal cord.
What complicates this already crappy crappy experience is that my sister is getting married tomorrow, I'm the matron of honor. The wedding is 3 hours away.
Oh and let's add more anxiety to the mix. The hospital wanted to release him to home healthcare, which is insane. He can't move! They say because he wouldn't benefit from PT he doesn't qualify for assisted living.
I'm so freaking anxious about going tomorrow to my sisters wedding. Thankfully my wonderful aunts have promised to take care of him. We've also advocated for a reevaluation for PTOT in the morning. But it sucks. It sucks for everyone.
Daughter of Father
CRC dx 09
Collapsed lung 7/12
Mets to the bone, liver, lung and adrenal gland
Flofox6 started 1/13
Chemo Break 1/14
More Chemo 6/14
Lost ability to stand 9/15/14
Radiation 9/18/14

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: Crappy crappy timing with no good choices

Postby singingholly » Fri Sep 19, 2014 2:44 am

I'm sending you a big big hug from Italy, dear. Just this.
Olivia
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

ForDad
Posts: 84
Joined: Mon Feb 03, 2014 4:13 pm
Location: California

Re: Crappy crappy timing with no good choices

Postby ForDad » Fri Sep 19, 2014 7:10 am

I am so sorry about what's happening with your father. What a stressful time this must be for you. Please take care.
Best wishes to you, your father, and your sister - hope the wedding went well.

Sue
Daughter to Dad age 67 @dx, Dec. 2013 (now 73)
Stage IV cecum, 4 liver mets, CEA 21.8
MSS, KRAS mutant (G13D), MLH1 mutant (V384D), and TP53 mutant (G245S)
1/14 FOLFOXIRI, 2x
2/14 FOLFOX, 1x
3/14 Right hemicolectomy, 2/38 nodes
4/14 FOLFOX, 4x
8/14 Liver resection
9/14 Liver tumor growth: microwave ablation
10/14 FOLFIRI, 6x
1/15 NED
2/16 8 to 10 lesions in lungs
3/16 Avastin + 5FU, 72x
4/19 Growth in lungs, lymph nodes. FOLFIRI + Avastin, 4x (CEA 12.4)
7/19 Started Stivarga + Opdivo
10/19 Start Hospice

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

Re: Crappy crappy timing with no good choices

Postby skypup » Fri Sep 19, 2014 9:22 am

Perhaps a good hospice is a choice? It's not just for dying, it's great for palliation. As long as a doctor can say that in the normal course of the disease death will likely occur in six months (and that can be said for most of us stage IVers even though we often live much longer), hospice can be brought in. You can still see his doctor while on hospice, and chemo and radiation may be continued if they help in the management of symptoms. Hospice folk are great at managing pain and most people are truly blessed by them. Plus, if you have one with a residence option, your dad can go in from time to time for what they call respite care; they take care of him and the family can take a break. I volunteered at an in-patient hospice, and they are so, so, SO wonderful.

LeighB
Posts: 41
Joined: Sat Nov 24, 2012 10:02 pm

Re: Crappy crappy timing with no good choices

Postby LeighB » Fri Sep 19, 2014 2:24 pm

Good news. He was reevaluated and approved for PT so he can go to an extended care facility. Today things are heading in the correct direction. He transfers this afternoon. We shall see what the future holds. Thanks for the advice on using hospice.
Daughter of Father
CRC dx 09
Collapsed lung 7/12
Mets to the bone, liver, lung and adrenal gland
Flofox6 started 1/13
Chemo Break 1/14
More Chemo 6/14
Lost ability to stand 9/15/14
Radiation 9/18/14

Val*pal
Posts: 860
Joined: Sun Feb 10, 2013 1:24 pm
Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: Crappy crappy timing with no good choices

Postby Val*pal » Fri Sep 19, 2014 3:46 pm

Leigh:
I'm so glad this got resolved.
Please go and thoroughly enjoy your sister's wedding.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

Little Sunshine

Re: Crappy crappy timing with no good choices

Postby Little Sunshine » Fri Sep 19, 2014 8:43 pm

Skypup wrote:Perhaps a good hospice is a choice? It's not just for dying, it's great for palliation. As long as a doctor can say that in the normal course of the disease death will likely occur in six months (and that can be said for most of us stage IVers even though we often live much longer), hospice can be brought in. You can still see his doctor while on hospice, and chemo and radiation may be continued if they help in the management of symptoms. Hospice folk are great at managing pain and most people are truly blessed by them. Plus, if you have one with a residence option, your dad can go in from time to time for what they call respite care; they take care of him and the family can take a break. I volunteered at an in-patient hospice, and they are so, so, SO wonderful.



As a trained Hospice Volunteer I agree. Well said pup.

Delinda
Posts: 402
Joined: Sat Jul 12, 2014 8:39 pm
Location: Washington state

Re: Crappy crappy timing with no good choices

Postby Delinda » Fri Sep 19, 2014 9:28 pm

Skypup always has the best advise, and I'm thrilled that things worked out for your dad. Also hope you were able to enjoy your sister's wedding. Odd how walking this path helps us treasure those special moments even more. My best to the happy couple. XXOXO, Delinda
62 yo wife & mom
4/14 dx stage IIIC colon cancer
4.5cm tumor, 9/28 nodes
temp colostomy, take down 6/14
7/14 start FOLFOX, 6 mo

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

Re: Crappy crappy timing with no good choices

Postby justin case » Sat Sep 20, 2014 7:53 pm

Skypup wrote:Perhaps a good hospice is a choice? It's not just for dying, it's great for palliation. As long as a doctor can say that in the normal course of the disease death will likely occur in six months (and that can be said for most of us stage IVers even though we often live much longer), hospice can be brought in. You can still see his doctor while on hospice, and chemo and radiation may be continued if they help in the management of symptoms. Hospice folk are great at managing pain and most people are truly blessed by them. Plus, if you have one with a residence option, your dad can go in from time to time for what they call respite care; they take care of him and the family can take a break. I volunteered at an in-patient hospice, and they are so, so, SO wonderful.

Damn Pup, after reading this thread, you did some good awesome work to turn this situation around. You get three 8) 8) 8)
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

ColOrPan
Posts: 378
Joined: Thu Aug 22, 2013 2:15 pm

Re: Crappy crappy timing with no good choices

Postby ColOrPan » Sat Sep 20, 2014 10:35 pm

Have you checked into star rfa for spinal bones mets? My husband had this ablation done to his spinal met. Here is a link from this board about it.
viewtopic.php?f=1&t=36905&p=263924&hilit=Star+rfa#p263924
06/2012 DH rare intestinal type Ampullary/duodenal cancer. They extrapolate from colon cancer. FOLFOX 6 been working since Aug 2013. Feb 2014 once a month folfox as maintenance.
May 2014 Folfiri - fail
Starting off-label JAKAFI 08/25/14

LeighB
Posts: 41
Joined: Sat Nov 24, 2012 10:02 pm

Re: Crappy crappy timing with no good choices

Postby LeighB » Sun Sep 21, 2014 9:00 pm

Thanks for the suggestion I forwarded it on to my aunts.
The wedding was beautiful. I'm happy I went. My sister and I were very well supported by our family and friends as was my dad. I wish he could have been there but he sent along videos messages for the bride and groom. The videos were great they made me laugh and cry at the same time. You could tell he was having fun with them.
Unfortunately, things were not all roses. His first night at the extended care facility resulted on a broken hip. He fell out of bed I guess. So after the cake cutting my aunt and I drove back. He's back in the hospital now having gone through a hip replacement surgery.
All of this has really been a blur. No sleep, too much pain and anxiety. I'm not even the one with cancer here.
Daughter of Father
CRC dx 09
Collapsed lung 7/12
Mets to the bone, liver, lung and adrenal gland
Flofox6 started 1/13
Chemo Break 1/14
More Chemo 6/14
Lost ability to stand 9/15/14
Radiation 9/18/14


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