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

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Deb m
Posts: 491
Joined: Tue Jan 14, 2014 10:08 am

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

Postby Deb m » Fri May 24, 2019 10:55 am

If he is MSI, then I don't see why they wouldn't try immunotheraphy. MSI/MSS is something that is determined from getting genetic testing done. Has he had any?

brokenwings
Posts: 99
Joined: Mon Jan 07, 2019 1:50 am

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

Postby brokenwings » Fri May 24, 2019 11:55 am

mslaurie wrote:
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.


MSS: micro satellite stable (non eligible for immunotherapy)
MSI: micro satellite stable (eligible for immunotherapy)
It's a long shot, yes (5%) but if your husband's MSI he could do immunotherapy and get cured.
DX January 2019
Liberkulien Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay.Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: not optimally resectable, surgery cancelled. Right ovary removed though...
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
06/25: 4th cycle
07/03: peritoneography
07/04: exploratory laparoscopy

mslaurie
Posts: 11
Joined: Sun May 19, 2019 7:04 pm

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

Postby mslaurie » Fri May 24, 2019 5:30 pm

It's a long shot, yes (5%) but if your husband's MSI he could do immunotherapy and get cured.


I'm a little hesitant to have faith in the word "cured" at the moment. He was NED for 9 1/2 years essentially considered "cured" which on some reports after 6 years of being NED is considered cured.
His cancer "Still" came back like a vengeance just like it never left in the first place in less then a year from scans showing nothing, CEA normal, colonscopy and upper GI all clear all withing 6 months and "Wham" here we go again.

Still trying to keep hopes up that he will go into at least remission doubt with peritoneal mets that NED is ever going to be an option anymore but one can always hope.

According to his ONC stage IV there is no real cure per say - there might be periods of years where one is NED and then a recurrence after a while and treatments have to start again as he explained it its called palliative care when this happens. Seems when I look at some of the members past diagnosis and treatments quite a few seem to be on pallative care.

So for those of you that are stage IV that have bouts of NED and then recurrence and more chemo or ones who never achieve NED and have chemo on and off for years. How do you manage? I mean do you seem to have a normal life?

I'm just worried that chemo will just make my hubby sick all the time and be miserable. The side effects seem like they will be awful!

Sure cancer may end his life at some time with or without chemo but how does one know when Quality of life becomes a question?

mslaurie
Posts: 11
Joined: Sun May 19, 2019 7:04 pm

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

Postby mslaurie » Fri May 24, 2019 5:48 pm

Tuesday will be hubbys first chemo treatment. Scary as of now he is feels healthy and looking great, nothing hurts him anywhere only found out about the cancer coming back due to showing up on routine xray for something totally different not because he was feeling bad or anything. One would never even know he has cancer.

I fear this (his healthy look and attitude) will all change "forever" starting Tuesday when his chemo therapy starts. :?

Can anyone living with chemo on and off for a few years care to put my mind at ease? :cry:

brokenwings
Posts: 99
Joined: Mon Jan 07, 2019 1:50 am

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

Postby brokenwings » Sat May 25, 2019 5:59 am

mslaurie wrote:
It's a long shot, yes (5%) but if your husband's MSI he could do immunotherapy and get cured.


I'm a little hesitant to have faith in the word "cured" at the moment. He was NED for 9 1/2 years essentially considered "cured" which on some reports after 6 years of being NED is considered cured.
His cancer "Still" came back like a vengeance just like it never left in the first place in less then a year from scans showing nothing, CEA normal, colonscopy and upper GI all clear all withing 6 months and "Wham" here we go again.

Still trying to keep hopes up that he will go into at least remission doubt with peritoneal mets that NED is ever going to be an option anymore but one can always hope.

According to his ONC stage IV there is no real cure per say - there might be periods of years where one is NED and then a recurrence after a while and treatments have to start again as he explained it its called palliative care when this happens. Seems when I look at some of the members past diagnosis and treatments quite a few seem to be on pallative care.

So for those of you that are stage IV that have bouts of NED and then recurrence and more chemo or ones who never achieve NED and have chemo on and off for years. How do you manage? I mean do you seem to have a normal life?

I'm just worried that chemo will just make my hubby sick all the time and be miserable. The side effects seem like they will be awful!

Sure cancer may end his life at some time with or without chemo but how does one know when Quality of life becomes a question?


Hi there.
I was using the word "cure" only in the context of immunotherapy. Unfortunately, it doesn't work for most CRC patients (but it's still worth knowing if one is MSS/MSI).

I thought a lot about your husband's situation... Was cancer living in his body all of these years? I thought about the fact that scientists say that we all have cancer cells in our bodies but for most people, their immune system is capable of getting rid of them...

I hope chemo is easy on him...

I sure can tell it's making my life miserable...

Hugs.
DX January 2019
Liberkulien Adenocarcinoma - Sigmoid colon
Met to right ovary or borderline cyst?
Obstruction during hospital stay.Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) scheduled for 04/29: not optimally resectable, surgery cancelled. Right ovary removed though...
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
06/25: 4th cycle
07/03: peritoneography
07/04: exploratory laparoscopy

mslaurie
Posts: 11
Joined: Sun May 19, 2019 7:04 pm

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

Postby mslaurie » Sat May 25, 2019 11:20 am

I thought a lot about your husband's situation... Was cancer living in his body all of these years? I thought about the fact that scientists say that we all have cancer cells in our bodies but for most people, their immune system is capable of getting rid of them...


Hi yes, we all have cancer cells in our body and normally your immune system will keep them at bay. I think in my husbands instance is when he had his heart attack and open heart surgery 8 months ago it compromise his immune system which gave the prior dormant colon cancer cells freedom to reactive and take hold all this within a few short months.

My husband is deemed terminal - just so sad he fought so hard and survived the heart attack and surgery (hospital staff called him a miracle) only to have this illness come back that will end up taking his life. I feel so bad for him (us) that he (we) has to go through this. I almost in agreeance with him. It may have been better if he did not survive the heart attack as then it would have been quick and not this long slow way.

Life is not fair by any means..

mslaurie
Posts: 11
Joined: Sun May 19, 2019 7:04 pm

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

Postby mslaurie » Sat May 25, 2019 11:25 am

It would have been so much better if the cancer would have spread to his liver or somewhere else if it was going to come back. Then at least he would have been treatable and we would have had some hope... but no it had to come back in the worst possible place the Peritoneum which really does not give many options if at all for treatment. The cards just stacked up against him! I guess it is his time.

Borkenwing I see you also have peri mets - your younger then my husband he is 65.. and you are being followed closely by your medical staff. You may have other options for your treatment so I do not mean to discourage you. My husband case is a bit different then yours. Best of luck to you and Hugs back at ya.

DarknessEmbraced
Posts: 3308
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

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

Postby DarknessEmbraced » Sun May 26, 2019 9:47 am

I'm so very sorry to hear his cancer is back and I hope his treatment goes well!*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
NED 12/21/18


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