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

[Deb m]

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]

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.

[mslaurie]

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]

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?

[brokenwings]

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.

[mslaurie]

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]

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]

I'm so very sorry to hear his cancer is back and I hope his treatment goes well!*hugs*

[mslaurie]

UPDATE: Hubby has been doing chemo he is on his 3rd round. First two rounds knocked him on his butt.. first round super bad side effects had hiccups and dry heaves so bad 24/7 for about 2 weeks straight. Could'n't eat or drink hardly anything as could not stop hiccuping could not even sleep as the hiccups were all day and all night.. lost 20 pounds in 3 weeks. OXI IV and Xeloda- Oral at home.

2nd cycle - Oxi IV and Xeloda - Oral - same dosage as first cycle. Only had one really bad day (about the third day into cycle) then the mouth soars set in all over his mouth and down the esophagus good thing no hiccups this time around. Could not even open mouth as swollen so bad. Developed severe thrush - once again could not eat or drink but forced himself what little he could purred food and sipping through straw. ER Visit twice (in 10 days) for fluids for dehydration, edema and to get mouth meds. lost another 10 pounds this cycle. Called ONC after ER visit and they told him to stop the Xeloda - they let his body rest for 3 weeks off any chemo..

3rd cycle - they lowered his dosage of Xeloda - hes doing fine this cycle eating just fine, has great appetite gaining weight (Gained 8 pounds back so far), only side effect is very tired, weak and Zero energy otherwise feels fine.. oh beside his inguinal hernias (which are painful) that they won't operate on them until they get his ascites and cancer under control.

We are starting the 2nd week of cycle 3. I found a an Onocologial Surgeon who does cytoreductive surgery and HIPEC. We requested our ONC to send in a referral to have a consultation since both ONC and Surgeon are affliated with the same cancercare network.

Surgeon looked over all scans and records prior to appointment and he stated My Husband "IS" a candidate for the surgery and HIPEC. We met with the Surgeon yesterday July 30 2019. This surgeon is one of the pioneers in the field for this Surgery and HIPEC and has performed over 500 of these surgeries. Surgeon (Dr. Ryan HolBrook) located in Spokane WA (which happens to only be 70 miles from out home). Dr. Ryan stated that there is good response to certain types of cancers with this surgery and HIPEC. Mostly Appendix cancers that spread to peritoneum he said about 80-90% cure rate for that type. Not so with colon cancer he said surgery would probably give hubby 2-5 years additional years with a slight chance of cure. I read on internet it about 20% chance of cure rate with Surgery and HIPEC for colon cancer. Husband is going to and has been going to for chemo and now for the surgery
both at: CancerCare Northwest Center.

Dr Ryan said to finish out chemo rounds (has 3 more) during that time gain some weight and lift weights and exercise to build up muscle and in 4 months they would shoot to do the surgery.

We will take whatever time we can and for how long.

That is where we are at now..in this journey.

[TinaFish]

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,

I see someone who has been NED for 21 years on this forum... may I ask why? Was the cancer experience so horrific emotionally that you're still PTSD'd out 21 years later? So worried about it coming back that you're part of this site? I can totally see myself being effected like that. I can also see myself being on this site after being NED for a long time, just for the sole purpose of helping others. And, I admit, I can also, if I'm ever lucky enough to be NED, see myself just putting the whole scary cancer experience way back in the depths of my memory, and never wanting to think about it or talk about it again. I guess I'm just wondering what people go through after being NED for a long time.

[mslaurie]

For us.. we forgot all about cancer really, well it was on the back burner in thoughts. I never really thought to much about posting on this site as time went on after a year. I do not think I would have any words of wisdom for anyone back then since. He had a tumor, surgery and immediate NED status after surgery.

We went on with our life and cancer to us was a memory. I mean we always thought it may return locally in the colon so each year was a blessing and a relief to get a clean colonoscopy. It never really dawned on us that it could come back to a total different area after being gone so long. I guess as far as it spreading and turning to stage 4 out of the blue.

The Onocological surgeon said that is is very rare to come back and spread after 6 years but he said the chance of it coming back never really ever goes away there are usually are a few cancer cells still in the body that will lay dormant until they wake up. In my husbands case we think when he had his heart attack and open heart surgery last August 2019 and his immune system was compromised during that time gave the cancer cells free range to start up again.

Makes me wonder though.. during my husband heart surgery and when he was in ICU in seduced coma for 2 weeks. They had 3 tubes in a row - horizontally in his chest right under his rib cage draining fluids. The cancer that returned is pretty much right under where those 3 scars are where the tubes were placed. Peri mets are all around that area upper & under rib cage, the tumor on the outside of his transverse colon is right below where the tubes were and his liver which has some spread is also located directly under that location. As far as they can tell there is no cancer spread anywhere else - of course they will not know until they open him up .. but scans all show the cancer is located all in that same region. Might not mean anything that the cancer just happened to come back in that precise area where the tubes were but then again who knows maybe it did have something to do with it. We will never know for sure.

[stu]

That’s very interesting and I do believe without any scientific references that the immune system can hold the cancer cells at bay . My mum has only ever had twelve cycles of chemo which has given her time to get her strength back . One of her recurrences was seven years after diagnosis! The surgeon classed it as part of the original spread . In my mind her immune system must have been doing a good job holding it back .

I stay as I needed to hear from people further down the road that sometimes despite a difficult diagnosis people go on to life a good life .

Take care,

Stu

[GrouseMan]

I still read the forum almost every day after having lost my wife a little more over 2 years ago. I was a former anticancer drug discovery chemist. I mostly come to read and sometimes post on new drug discoveries or research concerning colon cancer. My Wife was diagnosed Stage IVb at the onset. She was very athletic and at age 50 she and her doctor talked themselves out of doing a routine colonoscopy because she was so healthy. Had they scheduled it then they would have diagnosed it in much earlier stage and she probably would be here today. It was ironic as I spent a good part of my career doing cancer research. I knew what the Staging meant. I still stop in read peoples stories and sometimes post when I have something to say that might be of help. We never really get over the trauma of a cancer diagnosis. In my case it was as a care giver. So don't go and take people that have been NED for longer periods to task for being here. Some have been luckier than others. And by and large I chalk it up to luck. That's the only way I can rationalize what I have seen here. I have to admit I get a bit angry still that some manage to survive this sort of staging and my wife who lived a healthy and active life did not. The Chemo rarely effected her very adversely. She had her chemo continued to go straight to work afterwards driving herself. She was an Engineer, she was strong and athletic (distance runner), but still ultimately lost.

Regards,

GrouseMan

[Cured]

Dear GrouseMan, So sad to hear of you & your wife’s struggle and loss.

Truly, some of us are fortunate and go on living this life. It is much easier for our loved ones if we survive. By God’s grace and love I trust I will live forever- just not in this world. This knowledge relieves the worry.

You are correct that the treatments are not universally successful. I friend referred me to the Chris Beat Cancer site. That guy is wrong to tell people that they can all survive as he did. Note that he appears to be making money from his site.

I am re-reading the book Anti-Cancer a New Way of Life and I believe there is lots to learn from it; and good practices to follow. But there are no guarantees.

I hope for good results for all.