Blockage

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GrouseMan
Posts: 721
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Blockage

Postby GrouseMan » Sat May 13, 2017 9:37 am

Its been a busy couple of weeks. Tuesday the 25th of April my wife had a CT scan as part of the clinical trial she was on. It was the first CT after the baseline while on the study drug. They attempted to contact her while we were at the hospital having her ureter stent replaced. The trial is being held at another one near by. So we didn't talk to the folks monitoring for the trial until Friday, the 28th. They of course wouldn't leave a message. Anyway Thursday the surgeon doing the stent replacement found a fistula between the ureter and her colon. The purpose of the stent has been to prevent it being pinched close by a tumor growing near it. We apparently it has resulted in that fistula. The surgeon hoped that the pressure from the stint would keep it closed and prevent leakage. In the mean time Friday - the folks doing the trail, wanted my wife to come in because they thought from the CT she had a blockage. Problem was my wide was feeling pretty good, hand had bowel movements and no fever or other pain except from her back having to do with her more recently diagnosed arthritis in her lower back. So everyone calmed down. Still my wife ended up being dropped from this trial as well as they observed progression. Still over the last several weeks my wife has not been able to eat well. She complained of always filling full. (The obstruction maybe) and her belly was getting rather tight.

Well this last Thursday the 11th for the first time she work up in the early morning and threw up bile. She had not really eaten much the last few days leading up to this and her pain on Thursday was quite high. I was scheduled to take a business trip starting Sunday and not returning until very early the following Saturday, but I had visions of something really bad taking place while I was gone, so I more or less forced the issue and called her Oncologists office and his NP suggested we drive down to the hospital and come into the ER. Not the local hospital, which is part of their system but smaller, but the main one about an hour drive away, because all of her team is located down there. So we got checked in and of course at the ER they don't assume anything, chest x-rays, some CTs scans - lots of blood work, EKGs etc to rule out everything. Several doctors over the course of the day came and went, some doing cursory examinations. Kept explain that my wife didn't have any nausea but could not hold anything down eat/drink 15 mins later it would suddenly and without any notice practically come back up. Finally - they decided to admit her into the hospital on the oncology ward as soon as they had a room for her. The admitting doctor, at that point seemed to be the most informed and he explained what he knew at that point. Since she was having BM's it might be a partial blockage. Also he thought her liver was quite inflamed and there was fluid he thought near her lung causing additional pressure and might be responsible for her elevated heart rate (BP was fine). So he notified the Radiation Oncologists as he thought that they might want to see about zapping some tumors on her liver to perhaps stop them from producing this liquid and also maybe tapping this to drain it.

Well needless to say I scrambled about and canceled my trip. They admitted her and since should couldn't take any of her normal pain meds for her back they used a very low does IV morphine. That did the trick and at least she started to feel much better. Still anything she tried to drink came right back up. I came home after they got her settled in. And things went pretty well for her except Friday morning before I got there. They of course would like her to eat so they brought a liquid breakfast. Well - even little sips etc it came right back up. some one we don't know who, prescribed miralax in a big glass of water. Wife says that isn't happing. Won't do anygood at all. They also prescribed an oral steroid to I think stimulate her appetite - of course that did go well either. Before I got to the hospital on Friday - the palative care folks had reviewed her normal pain med usage, and how much morphine she was utilizing while in the hospital overnight and the morning, and started to put together a better pain management plan. Also the Internal Medicine doctor came through and talked with us - check her abdomen etc and said that he was going to have the Radiation Oncologist and Surgical team people take a look at everything.

I have to say the most through examination was given my the Radiation Oncologists NP! She check my wife over physically more than anyone else had. She was also very informative about what she and her boss thought they saw in the CT scans taken from the ER. The Radiation Oncologist came in and he stated he didn't think her pain an discomfort had anything at all to do with her liver and abdominal tumors so believed any Radiation was not going to help with anything in that regard right now. He was the first to indicate that he clearly saw that her colon was really distended, and that she was clearly blocked by a large mass. They couldn't say at that point what might be the cause of the blocking because of course my wife couldn't do oral contrast. So - they are trying to get the baseline CT scan and the CT scan done on April 25th by the clinical trial at the other hospital to compare to theirs from the ER. As they finished up the surgical resident came in who works for the surgeon that originally did her resection. The resident also was very informative and was of the opinion that it was indeed a blockage, and that that had to go. She though they could try and soften it up with laxative and get her to pass it, but given my wife can't keep anything down, well - that one was probably out. The other was putting in a gastric tube and sucking it all out and then see if she could she could pass waste with continued use of a laxative or the final option being a colostomy. Early this morning they were leaning towards the tube and sucking it out, as the surgeon thinks there are risks with doing a colostomy when there are abdominal mets. But since then they think they might have found a place where they can manage one? I don't know. Anyway - if we can get weight back on her there is no reason she shouldn't be able to be eligible perhaps for another clinical trial if we can find one for her. Maybe while they do the colostomy they can get a sample to biopsy the mets that would give us better information about them for possible exploitation. Her other genetic testing was done on her primary which as we know is nothing at all like the mets.

Well - That's about it. Sounds like my wife after nearly 4 years is going to end up with a colostomy. I need to get out of here and over to the hospital.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

jhocno197
Posts: 809
Joined: Mon May 11, 2015 9:33 pm

Re: Blockage

Postby jhocno197 » Sat May 13, 2017 10:08 am

:(

I wish I had some good words to say, but I don't. This sucks and I am sorry. I hope the colostomy surgery goes well & she gets some relief & is able to put some weight back on.
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

BUD2016
Posts: 54
Joined: Sat Sep 10, 2016 3:25 pm

Re: Blockage

Postby BUD2016 » Sat May 13, 2017 10:51 am

Dear GM,

I wish your wife feels better soon and they find a solution to address her current set back. I have no advice, but you are a very kind person and you know a lot about this decease. You have given your advice to me and my mother on several topics here on the forum. And we are very grateful and thankful for that. I understand how you feel and share your pain. I wish that your medical team helps your wife to find the best solution and you get back to your work and life somehow gets back to usual normal. Best wishes.
09/2016: Mom dx/rectal cancer
10/2016: Open surgery. T3N0/Grade 2
11/2016: Pre-chemo CT - 10 mm liver spot right lobe. PET/CT scan shows 5 liver mets in both lobes
11/2016: FOLFOX + Avastin started on her 71st birthday
KRAS gen 2 G13D mutant, BRAF Negative, MSS
03/2017: Oxi stopped after 9th tx, 5FU cntd. CT scans w/ contrast every 2 months - small shrinkage/stable
05/2017: PET/CT progression, started FOLFIRI + AVASTIN
07/2017: MRIs/CT stable
09/2017: MRIs/CT - min progression
09/2017: FOLFIRI + CYRAMZA

stu
Posts: 602
Joined: Sat Aug 17, 2013 5:46 pm

Re: Blockage

Postby stu » Sat May 13, 2017 12:06 pm

I have benefited from your sound advice too and so wish I had something to offer you and your wife. I sincerely hope they get a good solution for your wife and quickly get her weight back up for a new trial. With you on her team I have confidence.
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

User avatar
CRguy
Posts: 9281
Joined: Sun Feb 10, 2008 6:00 pm

Re: Blockage

Postby CRguy » Sat May 13, 2017 1:59 pm

Sorry to hear about the new challenges she faces, but glad the whole team is in her corner, working on a plan !

one note on the oral medication issue, I am sure the docs have considered parenteral / injectables where available, BUTT many times do not immediately go to a rectal suppository / gel / infusion / retention enema approach. It may be possible to ask about this option ?

Sending all my best wishes and MEGA posi++++Vibes for moving forward

In Harmony on the Journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

DarknessEmbraced
Posts: 2826
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Blockage

Postby DarknessEmbraced » Sat May 13, 2017 3:21 pm

I'm sorry you and your wife are going through this!*hugs* I hope whichever method they use for your wife will help.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

MissMolly
Posts: 422
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Blockage

Postby MissMolly » Sat May 13, 2017 4:06 pm

Grousman:
What a whirlwind for both your wife and you. It sounds as though you have a very competent and robust medical team caring and supporting your wife. That is not always easy to find or have in place at critical junctures. Consider this a blessing.

I have certainly seen the case where an NG tube is actually snaked down to the jejunum (technically called a NJ tube for naso-jejunal tube) through which gastrograffin solution is slowly infused in order to ease an impaction (mass obstruction of fecal material or food bolus). Gastrograffin is comparable to a nuclear-powered laxative. It can be highly effective.

If your wife does undergo a diversional ostomy, I think you and your wife will find that it is much less of an interruption in life than the prospected outcome that you may be anticipating. While I can understand that having a colostomy now - after 4 years in the drenches of treatment and being able to avoid an ostomy - may feel like a loss or a failure of sorts, I ask you to reconsider your opinion of a colostomy. The advanced materials employed in the ostomy appliance systems available today make colostomy care as routine as brushing your teeth. Pouchinh systems are discrete. low profile, 100% odor free, and comfortable. No one will know that your wife has a colostomy, unless she chooses to tell those around her. In the larger scheme of all that you have been through as a couple in facing your wife's diagnosis and treatment, having a colostomy will be a minor blip.

You have a large wealth of people here sending out prayer and positive healing energy into the universe for both you and your wife. Take comfort in that knowledge.
- k -
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

Lee
Posts: 5248
Joined: Sun Apr 16, 2006 4:09 pm

Re: Blockage

Postby Lee » Sat May 13, 2017 6:02 pm

Wow, sounds like your wife has endured a lot recently. She will be in my thoughts and prayers. Hope things get better for her.

I have a permanent colostomy, it does not hold me back. I just keep a few supplies with me and I'm always ready. There is a learning curve in the beginning, what supplies work best for her, how to take care of her new stoma, etc. Butt in short order, it will be routine.

All the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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GrouseMan
Posts: 721
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Blockage

Postby GrouseMan » Sat May 13, 2017 7:20 pm

All - thanks for the feed back. CR Guy - I am not sure I understand your suggestion fully. It appears that from the bottom end if you will they probably can't really reach the blockage. It looks like either a stricture I think its called or a large enough tumor that has developed to cause the narrowing of the colon. At the hospital they are calling it a full blockage, but something is able to pass. This morning she was able to keep down her tea laced with Miralax apparently long enough to break some things up some. A while later she had a massive up chuck, and a little later another bowel movement. She wasn't feeling all that well this morning but by the afternoon looked and behaved like she was feeling significantly better. They are still taking a bit of a wait and see on the surgery. The surgeon that originally did her resection is in Chicago this weekend, and is due back Monday. He is the head of the colon surgery group and he can't see all the CT's etc while there. He will likely perform any surgery, but no decision will be made unless its an emergency until he is able to review everything.

Now I just got back home and my wife texted me that she was able to "eat" all her broth, and a clear Ensure. So that is progress. As mentioned the palliative people are doing a pretty good job with managing her pain, the fentanyl patch helped quite a bit last night but she told me as I was leaving this evening that last night it gave her very vivid dreams, though she can't recall them. She had to come more fully awake to realize that they were just a dream. Odd.

MissMolly - My wife is not squeamish, she is very practical and stoic. She has gotten on the internet and viewed some videos about ostomies and changing them. She is an Engineer so I don't think she will have any difficulties with its care and maintenance. The biggest issue the surgeons have is with placement - her abdomen has a lot of speckling of mets and finding a clear location to place it may prove to be difficult. She is quite healthy other than the cancer, blood work quite good, liver function good. etc. She has just lost a lot of weight mostly muscle mass as she never had a lot of fat to spare. She's lost about 20 lbs since the end of February because of her lack of appetite from feeling full all the time. She has not had any nausea with this blockage (or much with all the chemo she has had BTW).

The other option is if the area of her colon to where it is blocked isn't very long - once they clear the blockage it might be possible to use a stent as well. But this only will work if the area is not very long. They can't tell yet, because they have not been able to get a CT with oral contrast. It is hopped that on Monday they can look at the CT's from the other hospital where she was doing the trial. Theirs was with both contrast agents and was done on April 25. They just haven't show up at her hospital yet.

On another note I talked to my mother this morning as she called to tell me about my grandfather finally going into a nursing home. He is about 4 months shy I think of turning 100 years old. He was no longer mobile under his own power any more and my aunt couldn't lift him out of bed and help him to the bathroom any longer. He also has some dementia but otherwise is pretty healthy just getting really old. Apparently he didn't make any fuss when they got him checked in.

Its been a really hard couple of weeks folks. But we will manage I think and do OK for a bit longer. Thanks for the thoughts folks... Much appreciated.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

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CRguy
Posts: 9281
Joined: Sun Feb 10, 2008 6:00 pm

Re: Blockage

Postby CRguy » Sat May 13, 2017 10:01 pm

Hey buddy,
just offering the suggestion of using the rectal/colonic mucosa as an alternate "absorptive" mechanism.
Catheter infusions and enemas are used in vet med for those patients who generally will not take oral meds, or cannot due to obstruction....
especially anything which is directly "active", without needing liver metabolism / bio-activation.

Typical of this forum ... we all just wish to send whatever positive thoughts or ideas we can.

Thank you for the update. We are all concerned and please give your wife all our best wishes.
We only wish we could all send exactly what she NEEDS right now to help her out, and support you.

Sounds like things have improved for her and that her own team is "on it" !

Harmony and best wishes to you both
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Blockage

Postby Maia » Sun May 14, 2017 6:27 am

Dear GM, just here reading you and sending lots of good thoughts for you and your wife. I'm positive you'll get over or around this bump and you will find a next therapy to pursue, for a durable response.
Strong thoughts heading your way, guys!

mhf1986
Posts: 62
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Blockage

Postby mhf1986 » Sun May 14, 2017 9:24 am

If your wife is able to have the colostomy, I highly recommend she try a number of different pouching systems. Do not assume the one the hospital uses is best for her. DH came home last year with an unexpected stoma and a 1 piece system. He's now switched to a 2 piece system and is much better able to manage it.

Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastin added 12/16
4/17: CEA 11, blood pressure medicine added
6/17: CEA 15, OX discontinued due to neuropathy, Vit D added
11/17: CEA 38, back on OX due to liver tumors' growth, switching to Xeloda too

User avatar
GrouseMan
Posts: 721
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Blockage

Postby GrouseMan » Mon May 15, 2017 10:54 pm

Well - things happened rather quickly today. I took my time getting to the hospital this morning as last we knew her surgeon was going to review his partners and residents plan. While I was driving (its an hour drive) in he apparently made his decision and as he put it "bribed" the OR scheduler, and got my wife in ASAP. I arrived just as the anesthesiologist was getting her consent to put her out and deciding what to use. Her surgeon came in said he thought that it was possible the plan might work but he was less optimistic than the resident and his partner in the office. He said if he got in there and it looked like tumors on the abdomen would not allow for placement of the Stoma he would just close her up. So when 45 mins passed he came to talk to me I was afraid things had gone wrong. He said the surgery was a success but he also qualified it saying he couldn't guarantee as to how long this might work before another tumor blocked the stoma. Anyway when I finally saw my wife after she made it to her room, she was very alert and feeling much better. They had already had to empty the ostomy bag twice before she even got to the room from PostOp. While I was there they emptied it for a third time and not long ago again. The Nurses are impressed my wife says. She had mostly a clear liquid dinner but she took in more than I have seen her do in over a week. She is quite happy with the results. And the pain from this surgery seems to have been even less than her laparoscopic resection the same surgeon did nearly 4 years ago. All in all she complains of her lower back pain from the arthritis more than her abdominal pain now. I think this improved her QOL a great deal. So now she needs to put on that 20 lbs she lost and hopefully muscle mass and not fat. Get in a position where we could get her into another trial provided we can find one that would fit.

I need to hit the sack. Its been a long roller coaster day.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

lpas
Posts: 987
Joined: Wed Nov 19, 2014 11:11 pm

Re: Blockage

Postby lpas » Tue May 16, 2017 7:53 am

So very glad to hear it went well! Keeping fingers crossed that you find a great trial.
11/14: Dx sigmoid CC @ 45yo
12/14: laparoscopic colectomy, hysterectomy
T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15: XELOX, celecoxib & many supplements
3/16: Ovarian mass removed. Benign fibroid
9/16: clean colonoscopy
3/17: clean CT
Ongoing: celecoxib, cimetidine & other carefully-targeted supplements
Post-chemo CEA: 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6
Mom to a 3 & 6yo

jhocno197
Posts: 809
Joined: Mon May 11, 2015 9:33 pm

Re: Blockage

Postby jhocno197 » Tue May 16, 2017 10:40 am

Thank you for the update. So glad to hear she has already gotten so much relief!
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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