Wives of husbands with Stage IV Colon Freaking Cancer

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Snapfish
Posts: 50
Joined: Mon Oct 05, 2015 10:42 pm
Location: Washington, DC (dad in Houston, TX)

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Snapfish » Thu Apr 07, 2016 1:24 am

Hi, christyB. Welcome to the club none of us ever wanted to be a part of. I am a daughter not a wife, but I can so relate to the difficulty in watching life get harder for them.

I don't know if your oncologist would approve, but when my dad's constipation became extreme, we gave him "The Purple Bomb." It's 2-4 oz of prune juice, a dose of Milk of Magnesia, and topped off with ginger ale. He said it was nasty, but the result was worth it. There was no cramping like with senna teas or similar.

Hope that helps and I hope you get to have chemo soon so he can start feeling better. Saying a few prayers for you guys!

-snapfish
Daughter to 70-year old father dx 2015-Sept-28: Stage IV adenocarcinoma with signet ring cell features
Sigmoid colon primary with peri mets
MSS; RAS wild-type; mutation in exon 8 of p53

2015-Oct: Began FOLFOX-6 at MDA; CEA was 15.1 at baseline
2016-Feb: CEA 5.7; 10 full rounds of FOLFOX-6 completed
2016-Mar-3: Began FOLFIRI
chemo, chemo, chemo
2017-Jan: Total of 29 cycles of chemo down. Back on FOLFOX again after FOLFIRI fail. CEA now 118.

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby jhocno197 » Thu Apr 07, 2016 5:03 pm

To deal with my husband's constipation, we do 2 - 3 doses of miralax a day until there are results, then 1 a day to maintain.
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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Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Cowgirl918 » Thu Apr 07, 2016 5:16 pm

I was a daughter and now I am a patient. I too have used the "purple bomb" although this is the first time that I have ever heard it called that. :shock:
I can feel the pain in your words as you travel this very difficult path. This is a safe place to come for answers and support. My prayers are with you and your DH.
Take Care
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

amfa
Posts: 2
Joined: Sat Apr 30, 2016 12:42 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby amfa » Sat Apr 30, 2016 1:20 pm

My fiance and I have been together for 9 years he is currently 44 years old.
In January of 2015 he was diagnosed with stage 4 colon cancer. After a sigmoudectimy, a microwave ablation of the tumor in the liver, and 6 months of chemo, additional tumors were found in the pelvic area. A surgery in November 2015 to remove the new tumors discovered peritoneal carsinomatosis. At that point he was given 1.5-2 years expectancy, maybe an additional year with more chemo. After 4 rounds of the new chemo we stopped due to his severe reaction to it - quality over quantity. Hospice was started in February of this year.
In mid-March the severe stomach pain started. In trying to manage the pain we discovered that he had a reaction to morphine which completely stopped his gut functions. Stopping the morphine got things moving again and him able to drink and eat again.
Now his stomach has become so distended that he looks pregnant and he has lost most of the muscle mass in his arms so they look like sticks with flesh hanging on them. He sleeps a lot now but still gets up, moves around the house occasionally and hangs out on the couch.
I'm trying to find info on what to expect in the last 6 months of life because I feel that we are not getting the 1.5-2 years we were told about in November.
I know every case is different but can anyone tell me what stage we may be at and what I can expect moving forward?
Thank you

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby midlifemom » Sat Apr 30, 2016 5:06 pm

amfa wrote:My fiance and I have been together for 9 years he is currently 44 years old.
In January of 2015 he was diagnosed with stage 4 colon cancer. After a sigmoudectimy, a microwave ablation of the tumor in the liver, and 6 months of chemo, additional tumors were found in the pelvic area. A surgery in November 2015 to remove the new tumors discovered peritoneal carsinomatosis. At that point he was given 1.5-2 years expectancy, maybe an additional year with more chemo. After 4 rounds of the new chemo we stopped due to his severe reaction to it - quality over quantity. Hospice was started in February of this year.
In mid-March the severe stomach pain started. In trying to manage the pain we discovered that he had a reaction to morphine which completely stopped his gut functions. Stopping the morphine got things moving again and him able to drink and eat again.
Now his stomach has become so distended that he looks pregnant and he has lost most of the muscle mass in his arms so they look like sticks with flesh hanging on them. He sleeps a lot now but still gets up, moves around the house occasionally and hangs out on the couch.
I'm trying to find info on what to expect in the last 6 months of life because I feel that we are not getting the 1.5-2 years we were told about in November.
I know every case is different but can anyone tell me what stage we may be at and what I can expect moving forward?
Thank you


Amfa,
I think hospice should be able to tell you what to expect moving forward.
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?

Mojo
Posts: 729
Joined: Sat Mar 26, 2011 1:43 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Mojo » Sun May 15, 2016 11:07 am

Hello everyone, just checking in on you all. Purple cat, my husband wore those little brown cotton gloves to warm hands, wore them all the time, hand warmer packets helped too.
Christy b chemo is very dehydrating, does he get extra bag of iv fluid right after chemo, or the next day? It seemed to help Kenny a lot. Hard to move bowels if dehydrated. Good luck, hope things are better for him already in the bowel movements.
Amfa. Thinking of you both, hospice can help you understand what is going on. I have posted in this thread about my husbands last couple months , But here is a link if it would help .
http://www.cancerforums.net/threads/193 ... fe-goes-on
Swelling tummy can be several things but could be liver starting to fail and ascites building. Ask hospice about this.
Hope 4 Jesse I sai hai is scheduled May 17. Will be praying.
Also praying for you all and your loved ones.
Hugs, Sharon
colon cancer stage 3 2n0mets 2002
cancer returns march 2010
emerg brain surgery, chemo may 2010 sterotactic radiation april 2010

progression of tumors march 2011 new chemo camptosar leukovorin 5fu avastin
Kenny age 58/died 11/21/11

ronswife
Posts: 141
Joined: Mon Apr 25, 2016 12:25 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby ronswife » Mon May 16, 2016 3:35 pm

I am SO, SO glad to join this group! My hubby was diagnosed with stage 4 colon cancer on 3/15/16. He has had two chemo treatments so far, with a little diarrhea the first time but NONE the second time, praise GOD!

But Ron's biggest issue now is the large blood clot in one of his lungs and many deep vein clots in both legs, most of them in the right leg. I am ANGRY because these clots should be been diagnosed MUCH sooner, as he has had leg pain for almost TWO freaking years! His stupid so-called "family" doctor put him on 900 mg per day of gabapentin for diabetic nerve pain. IDIOT!!

Ron is getting daily injections of Lovenox and is doing well with this. He thought he was going to DIE on 4/29, the day after his first chemo, when he could hardly breathe! They discovered the leg clots with ultrasounds that night in the ER!

Because of these clots his onc has decided against Avastin and will give him Erbitux instead starting with his third treatment on 5/26.

YES, I need all the moral support I can possibly GET right now! This is VERY difficult and I have had to increase the amount of Zoloft, an antidepressant, because of this!

A HUGE cyber hug to ALL you ladies and HUSBANDS too!!!

:cry: :)
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

Mojo
Posts: 729
Joined: Sat Mar 26, 2011 1:43 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Mojo » Mon May 16, 2016 4:55 pm

Hi rons wife. I'm sorry he's having blood clot issues. Chemo quite often cause cause blood clots, so the poor guy! Lovenox works quite well with this, I gave Kenny shots morning and evening. We were lucky we got home nursing to drop off the medication and I gave it. That helped a lot with the cost. Wishing you both the best! Hang in there!
colon cancer stage 3 2n0mets 2002
cancer returns march 2010
emerg brain surgery, chemo may 2010 sterotactic radiation april 2010

progression of tumors march 2011 new chemo camptosar leukovorin 5fu avastin
Kenny age 58/died 11/21/11

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby jhocno197 » Tue May 17, 2016 6:53 am

Ronswife, my husband had blood clots during treatment as well & had to drop Avastin. They cleared up after being treated, it just took a little while; he had three in his lung.
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

ronswife
Posts: 141
Joined: Mon Apr 25, 2016 12:25 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby ronswife » Tue May 17, 2016 1:32 pm

jhocno197 wrote:Ronswife, my husband had blood clots during treatment as well & had to drop Avastin. They cleared up after being treated, it just took a little while; he had three in his lung.


This is SO reassuring to know. Thanks jhocno197!!

:D
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

amfa
Posts: 2
Joined: Sat Apr 30, 2016 12:42 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby amfa » Wed May 18, 2016 6:14 pm

mojo - Thank you. Unfortunately my fiance passed on Saturday 5/14/16. Things progressed very quickly in the last 2 weeks. Thank you again.

Mojo
Posts: 729
Joined: Sat Mar 26, 2011 1:43 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Mojo » Thu May 19, 2016 3:29 pm

A mfa. I am so sorry for your loss. Hugs
colon cancer stage 3 2n0mets 2002
cancer returns march 2010
emerg brain surgery, chemo may 2010 sterotactic radiation april 2010

progression of tumors march 2011 new chemo camptosar leukovorin 5fu avastin
Kenny age 58/died 11/21/11

ronswife
Posts: 141
Joined: Mon Apr 25, 2016 12:25 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby ronswife » Thu May 19, 2016 3:40 pm

Mojo wrote:A mfa. I am so sorry for your loss. Hugs


So am I! He was SO young! SO, SO unfair!!

My prayers are with you!

:cry:
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

AngelaN
Posts: 206
Joined: Tue Jan 28, 2014 9:00 pm
Facebook Username: angelamnicholas

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby AngelaN » Sun May 22, 2016 11:13 am

Hey everyone
Been a long time. Welcome to the new members. This is a place to vent and ask questions and get a lot of support.
Completely freaking out here. We had a really rough fall and winter - finished FOLFIRI + Avastin (had a total of 32 chemo treatments). Had SBRT for lung met, then ablation of two more lung mets, and 3 weeks later an ablation of another one. Then he got a pneumothorax a week later (rarely seen complication supposedly) and was sent home w a chest tube for 4d. Then in Dec, new liver met and SBRT. We got back from an amazing two week vacation, and more lung mets. The oncologist suggested we enroll in a clinical trial for KRAS mut + cancer patients. Did all of that testing, and the Thurs before he was supposed to start the drug, got appendicitis. They treated him medically, but no study until the next cohort starts the end of June. There are a lot of studies out there. I talked to someone from Hopkins with a PD1 trial + potentiator for the KRAS mut, MSS issue. I am watching ASCO with elation about all the new abstracts. I just don't know what to do. He is playing golf, having fun, and basically in no treatment since Jan. But I feel like time is ticking and I need to do something NOW. I know this is stupid but I watched Grey's Anatomy yesterday with him, and there is this theme that you only find one true love. He thought I was crying at the wedding, but I don't want to lose my one true love. What do I do? Do we wait until June? Do we go to Hopkins? Do we look for something else?
I am a pretty decisive person but I swirl in indecision right now.
DH diagnosed with Stage 4 CRC Nov 2013
11 tx Folfox/Avastin; LAR/liver resection/introp RF of liver - May 2014
3 treatments FOLFIRI
Lung resection - Sept 2014
FOLFIRI + Avastin x 10 treatments
Avastin+5FU q3 weeks x 4
SBRT x 1 lung met
RFA for remaining 3 in Oct and Nov
SBRT for liver met Jan 16
lung mets growing
Enrolled in NIH TIL trial Oct 16
XRT for lung met 12/16
Cells didnt grow for TIL trial Feb 17
Waiting for NCT03085914 at Penn

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j'swife
Posts: 76
Joined: Tue Feb 12, 2013 7:06 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby j'swife » Sun May 22, 2016 12:19 pm

Hi Angela. .
Of course this drumbeat of threats is horrifying and wears us caregivers down along with all that positive energy we try to generate.
BUT. Let me share 3 things we have learned that suggest what is going on with your DH is not a doomsday scenario.
1 cancer is associated with a much higher risk of thrombosis independent of any effects chemo may have . It's not abnormal for our patients and it is manageable. My DH has had two big ones ..the last one persists. He injects himself 2x daily w Lovenox til it vanishes. (Not a quick outcome.)
You also have to routinely do all the precautions people take for long air flights..don't sit or drive for hours without a walking break etc.

2 a majority of stage 4 crc patients with initial successful surgery will get recurrence but a sequence of going after them just exactly as your team has done and obliterating the mets over and over leads to complete remission in many cases. There is a 2015 article findable on PubMed written by Nancy Kemeny and surgeons from the MSK team documenting the results. I will look for it and PM a link if I find it.
My point is the course of action being pursued may be exactly right. And the pesky recurrences aren't necessarily a fatal indicator.

3 you would only want a clinical trial that is better than good -practice options you have now. Or that adds to them.

it sounds as if your doctors would help you more if they would go through their thought process about what each of these reoccurrances means and the choices for fighting them off... I hope you have that kind of decision support available as you mull over these paths.
All the best..
DH 63 12/12 unresectable liver mets. 2/13 Ffx-Avstn fail. 4/13 HAI pump@MSK. 8/13 mets 50%;Resectn & LAR 10/13.NED! Folfiri & FUDR. reversal 4/14. 3 lvr spots 10/14. 5FU+FUDR. 5/15 resectn/IRE . 7/15 lung 'thingy' 9/15. FUDR, Xeloda. HFS. 2/16 RFA of lung met. FUDR/IRI. 4/16 2 lung 1pelv spots. XEL, stop FUDR. 6/16 RFA 2of 3 mets. XEL. D.10/3/2016 of infection post surgery to remove aortic clots (rare Budd-Chiari syndrome) in local hospital. HAI success! then blindsided


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