Quick update

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aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Quick update

Postby aja1121 » Mon Mar 14, 2016 3:18 pm

My husband had surgery at Mayo Clinic in February. The hope was APR with curative resection. Although the surgeons were able to remove the bulk of the actual tumor (size of a large orange) along with his rectum, anus and all colon below the new ostomy, they could not get clean margins, and cancer cells remain in the radiated/scarred soft tissue within his pelvis. We've been told most people survive for a couple of years, perhaps longer if chemo controls it effectively.

We found out he had a leak in his bladder shortly after the procedure (urology thinks it got nicked with the scalpel and didn't heal on its own due to previous radiation), so he's had a Foley catheter in for the past few weeks to let that close up on its own. Otherwise, he's healing well.

We looked at some trials, but most of them want "measurable disease." Since the surgery removed the existing mass, we've been told to start FOLFOX this week, and scan after two cycles to look for progression. If it's working, he will stick with it as long as he can tolerate, which is questionable as he's still having neuropathy from the first time around. If it's not working, the oncologists said they can use any evidence of growth as the baseline for measurable disease.

He has bad days, but his overall spirits are better now that he's not in pain from the tumor. Right I'm just trying to maintain hope and live each day as it comes. I have been too disheartened to do anything but lurk for the past few months, but I still read and keep you all in my thoughts.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Quick update

Postby stu » Mon Mar 14, 2016 5:19 pm

Hi,
I am sorry your husband did not get clear margins, hopefully the chemo will effectively kill off any remaining cells. I am glad his pain level has reduced. Its so hard when figuring out the best option when there is not a clear clinical path. I hope you keep posting to get the support and outlet you need. Learning here has helped me assist my mum in a more meaningful way.
Take care
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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

Re: Quick update

Postby jhocno197 » Mon Mar 14, 2016 6:05 pm

:( I am sorry they could not get clear margins.
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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