Back after almost 10 years NED - Ascites, Peri & Liver Mets!

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mslaurie
Posts: 18
Joined: Sun May 19, 2019 7:04 pm

Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby mslaurie » Sun May 19, 2019 8:21 pm

Well we are back again. My DH was diagnosed with stage II colon cancer Sept 2009. Had surgery removed 1 foot of colon and then has been NED ever since ---- UNTIL a routine xray on his lungs radiologist noted something funky with liver. Well yep its back in full force. He just has a colonoscopy and upper GI about 6 weeks ago.. and passed with flying colors... and now this!

Just sucks! Hubby just had a massive heart attack about 8 months ago and had emergency surgery for a triple bypass and valve replacement. In Coma for over a week - he fought through that ONLY to find out now he had to deal with Cancer recurrence and to the petrionel, liver and also ascites??

Its hard to believe that all the scans they did while he was in hospital for heart surgery. They sent him for scans full CT and other a few times a week in addition he had another full CT scan at a different hospital in December 20128 due to having an onsite of anemia out of the blue and they were looking to see if they could find any bleeding (which now in hinesite was probably due to the cancer). Nope nobody found any cancer with all those scans.. until an annual routine xray ( a couple weeks ago)on his lungs due to being a former smoker. Radiologist noted some funky on liver and mild ascites???? Just upsets me no one found anything sooner on any of the scans in the last 8 months and now it has spread this far. So they ordered a CR scan a wala here we go again!!!!!

Any one else any good news on peri-mets? Everything I have read on Dr. Google is all awful nothing positive at all. Can't believe he fought so hard through a heart attack only to have to fight for his life again with Cancer. Hubby says he would have preferred to not have survived the heart attack.

So if anyone could give any advice on Peri-mets would be appreciated. He will be going to a cancer center for treatments that do offer HIPEC but not sure if hubby would be a candidate due to his heart and he is not fully recovered yet from that major surgery.
I am Caregiver to my Husband
Oct 2009 stage IIb
Sept 2009 - Ifoot colon removed
NED since 2009 until April 2019
Clear Scan Dec 2018 = NED -Clear colonoscopy March 2019
Routine annual chest xray April 2019 (lungs fine liver show as abnormal)
May 2019 Ultrasound, CT scans confirm recurrence Peri and liver mets with ascites. Stage 4C
May, June, July 2019 OXI and Xeloda (1st cycle, 2nd and 3rd cycle)
July met with surgeon (Candidate for cytoreduction surgery and HIPEC) - 4 months till surgery.

Deb m
Posts: 512
Joined: Tue Jan 14, 2014 10:08 am

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby Deb m » Mon May 20, 2019 8:24 am

I'm so sorry to hear that. Way back when your husband was Dx with stage II colon cancer, did he have any follow up chemo.? Colon cancer is a very slow growing cancer and it could of been there all along , but for some reason they didn't see it? just wondering. How long do you do surveillance?

I hear good things about internal chemo treatments. Hopefully your husband will be strong enough to receive it.

hang in there,

deb m

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mslaurie
Posts: 18
Joined: Sun May 19, 2019 7:04 pm

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby mslaurie » Mon May 20, 2019 10:35 am

Hi

No chemo - was told at that time (and still shows today) that stage II there is not much evidence that supports if chemo treatment in that stage makes a difference or not and that recurrence will usually happens between 2-4 years after that likely hood of recurrence would be slim if any. He was followed up every 6-12 months up until October 2015 (Still NED) which would have been his 6 year mark with annual CT scans, blood work along with colonoscopies every 3 years which everything always came back with flying colors.

He has had 3 CT scans in the last 8 months... none found anything until this last one 3 weeks ago and that was 2 liver mets one 2cm and one very small under 1cm and a "patch" of Peri mets in one area and one large peri met 3.5 cm. One would have thought that the larger liver met and larger peri met would have showed up in one of the earlier scans in the last 8 months. Guess none of that matters now it is what it is and we have no choice but to deal with it and take what ever happens from this point on. Even with the liver and peri mets his blood work looks fine like nothing is going on even now his last blood test results.
I am Caregiver to my Husband
Oct 2009 stage IIb
Sept 2009 - Ifoot colon removed
NED since 2009 until April 2019
Clear Scan Dec 2018 = NED -Clear colonoscopy March 2019
Routine annual chest xray April 2019 (lungs fine liver show as abnormal)
May 2019 Ultrasound, CT scans confirm recurrence Peri and liver mets with ascites. Stage 4C
May, June, July 2019 OXI and Xeloda (1st cycle, 2nd and 3rd cycle)
July met with surgeon (Candidate for cytoreduction surgery and HIPEC) - 4 months till surgery.

fumaros
Posts: 270
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby fumaros » Mon May 20, 2019 12:17 pm

I am really sorry to hear this. Have they confirmed it is colon cancer, are they or have they biopsied any of the lesions?
Take it one day at a time and one step at a time. The first thing would be to get the opinion of a good oncologist at a major cancer center.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby mpbser » Mon May 20, 2019 1:14 pm

Oh my god. Reading this during this juncture in my husband's life terrifies me.

Best of luck to your husband!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

justin case
Posts: 4258
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby justin case » Mon May 20, 2019 2:31 pm

I have a similar problem, and hope things go well. I did have 16 rounds of chemo after surgery. I'm 63 now. I won't go through chemo again , or radiation. I decided I didn't want to waste time and money on things that would restrict my life, that would end up with the same outcome, and not leave a proper life for my wife, afterwards. I understand his feelings. For me I have no pain or any symptoms, as I just retired the insurance is poor also.
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

Deb m
Posts: 512
Joined: Tue Jan 14, 2014 10:08 am

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby Deb m » Mon May 20, 2019 3:26 pm

Is there a chance that they, the lesions they are seeing are not cancer?

deb m

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mslaurie
Posts: 18
Joined: Sun May 19, 2019 7:04 pm

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby mslaurie » Mon May 20, 2019 5:22 pm

I doubt if they are not cancerous. Ascites (even though rare) does not show up unless cancer or cirrhosis of the liver and he does not have cirrhosis. He has his first appointment at a cancer center on Thursday. So will know more then.
I am Caregiver to my Husband
Oct 2009 stage IIb
Sept 2009 - Ifoot colon removed
NED since 2009 until April 2019
Clear Scan Dec 2018 = NED -Clear colonoscopy March 2019
Routine annual chest xray April 2019 (lungs fine liver show as abnormal)
May 2019 Ultrasound, CT scans confirm recurrence Peri and liver mets with ascites. Stage 4C
May, June, July 2019 OXI and Xeloda (1st cycle, 2nd and 3rd cycle)
July met with surgeon (Candidate for cytoreduction surgery and HIPEC) - 4 months till surgery.

Ron50
Posts: 695
Joined: Fri Feb 10, 2006 7:04 pm

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby Ron50 » Tue May 21, 2019 6:17 am

I am truly sorry to see you and your husband in the position you find yourselves. Sometimes life really is not fair. I have to wonder if the hit your husbands system, particularly his immune system, from his heart attack has given cancer a free reign. I was dxed stage 3c and my surgeon almost gave it to me in writing that I would not last three years. I reached 21 years post cancer in January this year. I have to take cyclosporine twice a day to keep my kidneys functioning. It is a transplant grade immunosuppressant and most people who have had transplants are more likely to succumb to cancer than any other cause.
I wish you both well and hope that they can do something to get your hubby through this, Hugs Ron,
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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mslaurie
Posts: 18
Joined: Sun May 19, 2019 7:04 pm

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby mslaurie » Tue May 21, 2019 8:22 am

I think the same thing about his heart surgery and how it effected his immune system. I do believe it contributed to the cancer returning.
I am Caregiver to my Husband
Oct 2009 stage IIb
Sept 2009 - Ifoot colon removed
NED since 2009 until April 2019
Clear Scan Dec 2018 = NED -Clear colonoscopy March 2019
Routine annual chest xray April 2019 (lungs fine liver show as abnormal)
May 2019 Ultrasound, CT scans confirm recurrence Peri and liver mets with ascites. Stage 4C
May, June, July 2019 OXI and Xeloda (1st cycle, 2nd and 3rd cycle)
July met with surgeon (Candidate for cytoreduction surgery and HIPEC) - 4 months till surgery.

Cured
Posts: 535
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Back after almost 10 years NED - Ascites, Peri & Liver Met

Postby Cured » Tue May 21, 2019 12:39 pm

So sorry to hear of your husband’s recurrence. similar to mine. After 10 years cured my cancer came back. Little doubt that it was aggravated by pneumonia vaccine; in my case.

For your husband: his other health conditions caused his system to be fragile and for the cancer to roar again. If only the medical community was more holistic. Each of us has a genetic makeup and has immunities- which work well or not.

When you look at big picture health treatment: you see (at best) only half success for the big 3; Heart, cancer & auto-immune diseases. Actually really sad.

I am alive and healing again. Glory to God. But hate to worry my family and burden them. I offer to fast and practice Ketogenic diet, but the Oncologists don’t want to consider it. We know that sugar feeds cancer: so why not try starving the cancer of glucose? I do believe that being in ketosis helped while I endured Folfiri. But I cannot get the Dr to even run a blood test for it.

I hope your outcome is well.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgeon Remvd 90%Rectum,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7
12 rds Folfiri
Avastin evy 3 wks
Had Seizure Anti-seizure meds work-no driving for 6 months
Neuro allows me to drive again 0 meds

brokenwings
Posts: 101
Joined: Mon Jan 07, 2019 1:50 am

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby brokenwings » Thu May 23, 2019 3:21 am

mslaurie wrote:Well we are back again. My DH was diagnosed with stage II colon cancer Sept 2009. Had surgery removed 1 foot of colon and then has been NED ever since ---- UNTIL a routine xray on his lungs radiologist noted something funky with liver. Well yep its back in full force. He just has a colonoscopy and upper GI about 6 weeks ago.. and passed with flying colors... and now this!

Just sucks! Hubby just had a massive heart attack about 8 months ago and had emergency surgery for a triple bypass and valve replacement. In Coma for over a week - he fought through that ONLY to find out now he had to deal with Cancer recurrence and to the petrionel, liver and also ascites??

Its hard to believe that all the scans they did while he was in hospital for heart surgery. They sent him for scans full CT and other a few times a week in addition he had another full CT scan at a different hospital in December 20128 due to having an onsite of anemia out of the blue and they were looking to see if they could find any bleeding (which now in hinesite was probably due to the cancer). Nope nobody found any cancer with all those scans.. until an annual routine xray ( a couple weeks ago)on his lungs due to being a former smoker. Radiologist noted some funky on liver and mild ascites???? Just upsets me no one found anything sooner on any of the scans in the last 8 months and now it has spread this far. So they ordered a CR scan a wala here we go again!!!!!

Any one else any good news on peri-mets? Everything I have read on Dr. Google is all awful nothing positive at all. Can't believe he fought so hard through a heart attack only to have to fight for his life again with Cancer. Hubby says he would have preferred to not have survived the heart attack.

So if anyone could give any advice on Peri-mets would be appreciated. He will be going to a cancer center for treatments that do offer HIPEC but not sure if hubby would be a candidate due to his heart and he is not fully recovered yet from that major surgery.


Hello,

I'm really sorry you and your husband are in this situation.
Peri mets are no good, I know that because I have them.... Having said that... Some people have excellent results with Irinotecan shrinking peri mets. Some people even become NED on Folfiri!
I had a partial response to Folfirinox on my peri mets, so it does work. Now I'm having IP chemo (clinical trial) to speed things up and get to surgery (HIPEC).
If systemic chemo doesn't exceptionnally work there's pressurized aerosol chemotherapy that is less harsh than HIPEC. It's not a curative treatment but some people have become NED thanks to it. I think it's still a clinical trial in the US but you should check it out anyway.
What do you know about your husband's MSS/MSI status? If he's a candidate to immunotherapy, that could solve all of his problems...
Tell us how it went in the cancer centre.

Big hugs,

Paola
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) 04/29: not optimally resectable, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
07/04: exploratory laparoscopy - necrosis of peri mets
4 more cycles
09/11: CT scan
09/12: last exploratory laparoscopy and final decision

User avatar
Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

PIPAC

Postby Green Tea » Thu May 23, 2019 8:21 am

brokenwings wrote:...If systemic chemo doesn't exceptionnally work there's pressurized aerosol chemotherapy that is less harsh than HIPEC. It's not a curative treatment but some people have become NED thanks to it. I think it's still a clinical trial in the US but you should check it out anyway.

Pressurized Intraperitoneal Aerosol Chemotherapy (PIPAC) through a single port: alternative delivery for the control of peritoneal metastases.
http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0100-69912018000400600&lng=en&nrm=iso&tlng=en

There seem to be several ongoing clinical trials for PIPAC, but most of them are being conducted outside the US. Here is one example:

Adjuvant Pressurized IntraPeritoneal Aerosol Chemotherapy (PIPAC) in Resected High Risk Colon Cancer Patients
https://clinicaltrials.gov/ct2/show/NCT03280511

User avatar
mslaurie
Posts: 18
Joined: Sun May 19, 2019 7:04 pm

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby mslaurie » Thu May 23, 2019 7:10 pm

What do you know about your husband's MSS/MSI status? If he's a candidate to immunotherapy, that could solve all of his problems


Not even sure what you mean by MSS/MSI.

No options were offered to my husband except pallative care Oxaliplatin (IV) and Capecitabine (oral). Said surgery is not an option due the number of nodules in his peritoneal. They did say remission could be possible again but really did not offer or even mention any other treatment option then what I listed above.

They will do a PET scan to see just how advanced his cancer is.

That's all we know.. we will take it one day at a time.
I am Caregiver to my Husband
Oct 2009 stage IIb
Sept 2009 - Ifoot colon removed
NED since 2009 until April 2019
Clear Scan Dec 2018 = NED -Clear colonoscopy March 2019
Routine annual chest xray April 2019 (lungs fine liver show as abnormal)
May 2019 Ultrasound, CT scans confirm recurrence Peri and liver mets with ascites. Stage 4C
May, June, July 2019 OXI and Xeloda (1st cycle, 2nd and 3rd cycle)
July met with surgeon (Candidate for cytoreduction surgery and HIPEC) - 4 months till surgery.

User avatar
mslaurie
Posts: 18
Joined: Sun May 19, 2019 7:04 pm

Re: Back after almost 10 years NED - Ascites, Peri & Liver Mets!

Postby mslaurie » Thu May 23, 2019 10:03 pm

Adjuvant Pressurized IntraPeritoneal Aerosol Chemotherapy (PIPAC) in Resected High Risk Colon Cancer Patients
https://clinicaltrials.gov/ct2/show/NCT03280511


He would not qualify - under the criteria for selected participants. Its mainly for newly diagnosed colon cancer patients..
I am Caregiver to my Husband
Oct 2009 stage IIb
Sept 2009 - Ifoot colon removed
NED since 2009 until April 2019
Clear Scan Dec 2018 = NED -Clear colonoscopy March 2019
Routine annual chest xray April 2019 (lungs fine liver show as abnormal)
May 2019 Ultrasound, CT scans confirm recurrence Peri and liver mets with ascites. Stage 4C
May, June, July 2019 OXI and Xeloda (1st cycle, 2nd and 3rd cycle)
July met with surgeon (Candidate for cytoreduction surgery and HIPEC) - 4 months till surgery.


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