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Dad has Stage IV colon cancer and MS

Tueffel
Posts: 102
Joined: Feb 2020

Hello guys,

 

My dad, 55, was diagnosed with colon cancer stage IV recently. It was all a huge shock for us. 

His mom had a malignant polyp removed when she was 53. His grandfather also had colon cancer and was living until the end of his life with a plastic bag. 

Even with this background we did not expect it. My dad was diagnosed 2014 with multiple sclerosis. It was so good to finally know the disease. I was happy and sad. Happy because we know it now and he wont die from it. Sad cause he can never be cured. 

Because of bowel problems he had a colonoscopy done in December 2017. It was well done and negative. This is the whole reason why colon cancer never crossed our minds before. It is normally such a slow growing disease...

The MS got worse and he was treated with immunosuppressiva. He got 2 new hip joints. So the pain from his hips and MS got better. You can not imagine how nice it was. After some time it finally got better. 

 

From Summer 2019 he had bowel problems. Not much, not unusual from the bowel problems he had from the MS. He was just sitting on the pot for hours. Had diarrhea, then constipation. We thought it could be lactose intolerance, parasite, chronic infection. He never told the doctors or us that he was also passing blood. I think all the treatments before would not be done if the doctor just heard:"Change in bowel habits and blood in stool"

 

He had a colonoscopy 27th Jan 2020. The cancer is nearly obstructing the lumen of the colon. We got back that it is adenocarcinoma, grade 2 so moderatedly differentiated. The localisation was good for surgery. 

 

The CT unfortunately revealed later that he has 2 liver metastases and a strange looking lymph node around inferior mesenteric a (dont remember it). So my dad is stage IV and developed it in nearly 2 years. 

 

My dads reaction was like "I never had a chance to win against the MS. Now I have" and "Two years ago I was not battling the MS for this" 

He do is willing to fight, as much as are my mom, my sister and me.

 

He is now in the hospital. On Friday he got a bag located before the tumor. When it is healed after approx 10-14 days they will start chemo. The focus is on the liver my dad said. If they would do the surgery first the rehabilitation time will take longer until he can start the chemo. 

 

I am myself in my fourth year of med school. I do understand stuff when I read it. Still when I search for it, it is sometimes not so nice. Even the prognosis differs on wikipedia between the languages (native German speaker but I study in English). Worst thing is the word no cure or palliative...

I do have so many questions. Why do they do this treatment plan? Can you resect the 2 liver metastases? Is their aim even to cure him? 

 

I just wanted to talk to you. I have read so many different posts and you are positive and encouraging. 

 

Maybe you can tell me which side effects of chemo we can expect? Which food was good during your worse days? I dont want him to loose weight during chemo. I know food is not a cure but I believe that good food can have a positive outcome. How is the regimen of chemo? Each week? Does my mom need to think of something? A friend had breast cancer and they were not allowed to have curtains in the house. 

 

I just want to know everything that can help him with surgery and chemo

 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I call you that, because you are a good son, to be here, looking for help for a father that you so obviously love. 

You have allot of questions. 

Liver tumours can and cannot be resected, depending on their position. Some are too close to vital areas that would cause a bleed. Others are positioned so that they can be removed or ablated. And you already know that livers can regenerate, and many have had liver resections and are living wonderfully.

I had a liver ablation, and it is less invasive and quicker recovery. That was almost SIX years ago, and I am alive and kicking. 

Stage IV is not always end of game. As I mentioned, I am Stage IV six years out. There are others her eon the forum who are Stage IV and more year, even though some are on the chemo for life regime. 

Do not let the Stage IV discourage you, because your outlook will affect your dad's, and ever single bit of positivity goes along way.  And I am not talking fake hope, there is true hope here. 

'The bag' is something that he will learn to live with. Living is the key, and if there is a bag involved, well, its a small price to pay. 

Chemo comes in many different forms. Once you find out the chemo regime that your dad will be on, we will be able to help you more with that. 

And, chemo affect people differently. I had the worst time, others breeze through it and go to work and play. And then there are those who are somewhere in the middle.  You will not know where you dad will come in that until he is neck deep in treatment. 

Talking abuot neck, he will probably get a port inserted. Ports can be a HUGE blessing. 

stick with us and we will stick with you. 

Good luck to your dad. 

Tru

Tueffel
Posts: 102
Joined: Feb 2020

Thank you! First: I am a girl. ;) My username could be misleading here... My dad actually gave me that name. In a German dialect "tueffel" means clumsy. I am a clumsy person...

 

Thank you for your positive words! 

I know I have a lot of questions... and to be honest I think I would be less worried if I would see the CT. I would understand what I would see there. That my dad has only 2 liver metastases I know because he got admitted on Thursday and they gave us the files to carry around. I was like "Oh interesting!" I looked through it and saw a letter to our GP. The doctor wrote down there that it only 2. It is a difference when you read it. Before we only knew that he had liver metastases. 

People say it is the unknown that makes you afraid. It can be both but I am praying a lot that they are small easy to resect or that the doctors hope that the chemo will even remove the metastases. I dont want to think that they are big or located at a difficult area. 

The bag is possible the least scary thing. I think it was a smart idea from the doctors. The tumor is obstructing the colon, causing pain, made it difficult in "what to eat". This way he gets fitter really quick and can start with chemo sooner and he does not need to check what to eat with tumor in a bowel or regerating bowel. 

 

I want my dad to win this battle even though it could be harder than the battle against the MS. 

 

A friend visited him today and he told me that he looks good. Tomorrow I will get to know more after the tumor board. I hope and pray for good news. It is my moms birthday tomorrow. She deserves a beautiful present with good news cause she will take care of my dad and everything around.

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

HA! 

I re-read your post and have no idea why I settled on your being a 'son'.    

I know you're not offended, because I have had several forum members think that I am a guy, as well. 

You seem to have it together, and that is fantastic, for your dad and for you - and any other family. 

We all approach our, or our loved ones diagnosis differently, and that is good.  I just had my CT Scan today, and they gave me a link to the patient portal.  I told my husband that I had no intention of looking at it. For me personally, if it is bad news, I want it from the Doctor, followed immedietely with a plan of action. My appiontmetn isn't until March 3rd, so I will just go ahead and pretend I didn't even have a scan. There is too much fun to be had from now until the 3rd. 

I agree with you that MS is plenty enough for your dad. It just seems to unfair to have another nasty disease on top of that.  Life, eh! If we could only pick and choose what happens. 

Stick with us and we will stick with you. 

Tru

Tueffel
Posts: 102
Joined: Feb 2020

Dont worry! Reading your words was kind of funny to me. Without a picture and a name that clearly indicates the gender it is sometimes difficult. 

 

I hear a lot of people saying that I act very mature in this case and that I am so strong. I do cry. It is my daddy. But I also talk to a lot of people with similar experiences and these people listen to me and are positive. Also talking to people going through the same for years makes me so hopeful. I clearly think that he will be cured.

The hospital treated our neighbour, 24 years old with testicular cancer with mets in liver, lung and brain. After first chemo, the mets were gone. I know different cancer, different chemo but that you are sure then that my dad is in good hands. Also reading a news article where his doctor said in march 2019:"With colon cancer we have the advantage: even if there are metastases, the possibility of cure exists." And lets be honest if they dont manage 2 metastases then I dont know... 

Even though I am anxious. Tomorrow we will hear how the tumor board will go on. I wrote for my dad many different questions down, I need answers too or better we all need answers too. This is the hardest part: the waiting. You know this. You want them to treat you as fast as possible but in your eyes it is not fast enough. 

I wish you a good time until the 3rd and good news! 

My dad will leave the hospital tomorrow. When everything is healed, they will start. 

My dad explained disability to me. I dont know it, I can try to understand it, help him if needed. It was not always easy with the MS but it stopped now. He knows how to fight, we know how different it can be to handle a sick person. Still you wish that these things wont hit you. 

I will stay positive and pray for good news tomorrow. 

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

Welcome to the board and I'm sorry that you had to join.  It sounds like the doctors are trying to develop all of your father's information in order to put him on the right path to recovery.  Stage 4 doesn't mean this is the end.  There are people on here that are stage 4 that have been here for years with complete recovery, and others that have maintenance chemo and are here years later. 

I'm not able to help you on the surgery question, but others will chime in with their experiences and what to expect.

They gave me a temporary bag after my initial surgery and you do get to deal with a new normal, but if it saves his life, then this is something that is a welcome change.

Once he has a plan for his treatment cocktail then it would be easier to tell you what he might be able to expect from it. There are a lot of people that have gone through what your father will be, and we are going to be right here with everything, especially encouragement for him to move forward.

Wishing him the best.

Kim

Tueffel
Posts: 102
Joined: Feb 2020

Hello Kim

 

Thank you for your words!

 

Believe me after the MS, I really was like "That is enough". We saw neighbours and friends struggle with cancer, sometimes loosing the battle. I was kinda happy that it was only MS even though this disease is not easy for my dad. He can barely shake hands with his right hand anymore. Still I always compared it to the years before when he was just sleeping, taking every eight hours ibuprofen. Finally, it got better, less hospital and then... cancer.

I know that my dad possibly has a higher chance to cure this disease than others. At least that is my hope and based on some information I have.

Still the worries always come back. Sometimes more, sometimes less.

I will definetely put an update when I know more and I really appreciate your answer. 

 

Thank you!

OnTheRoad
Posts: 15
Joined: Jul 2018

Hello, Tueffel

I am also sorry you had to join this forum. There is a lot of people here willing to help anyway they can.

I had colon cancer grade 3B, but unfortunately I discovered early January I developed a liver met.

I had an ablation last Friday and I am now sitting on my doctor's office waiting for him to to arrive

For me the chemo was harsh, but both the surgery and ablation were pieces of cake. I have a completely normal life so far.

If I could give you any advice, I would recommend you to move as fast as possible to to be the treatment. Even if there is a chance of cure, the sooner the treatment begins and the smaller the mets are, higher are the chances for a cure.

Keep us posted about the next developments... And good luck for your dad and you!

Tueffel
Posts: 102
Joined: Feb 2020

Hello OnTheRoad,

Thank you very mich for your input!

I am sorry to hear that you have a liver mets now. Are you now "updated" 4o stage 4 or do you stay in 3B? Or is it conaidered as a recurrence? 

I can really imagine how you must have felt yesterday, waiting. The waiting is the most terrible thing in cancer besides the disease. You want to be treated as soon as possible. If the cancer is out, everything is better. Still especially if you have some chronic diseases (like my dad with MS) and a higher stage the treatment needs to be properly disvussed to ensure a higher possibility of cure. 

Yeah my dad is not afraid of the surgeries either. I think it is more the chemo and the side effects that frighten him. We had a friend with leukemia 20 years ago and his mucous membranes were just sore and painful during chemo. He could not talk or eat properly. But I dont try to think about that much. The chemo 20 years ago was different and for a different cancer. Still I hope my dad will not really react to the drugs. It would be nice for him and of course the disease prognosis.  

I wrote down questions for my dad to ask the doctor. I really want to know why they dont operate these 2 liver mets. I get more worried then... Still I can only hope and pray. 

Today we will gett an update about further treatment. Tumor board was yesterday and my dad left the hospital. I hope for good news cause to be honest: we had so many bad news, we deserve good news now

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

Hi Tueffel,  how are things going your way with your dad?

Tueffel
Posts: 102
Joined: Feb 2020

Hey SnapDragon2,

Thank you for asking! He is good. I called him today or better my parents and we talked about his disease, corona etc. He is so positive and the chemo went good. I know it is just the first one but that was just with fatigue. Yesterday he worked a little, not much but we are positive, hoping he wins this fight. I am a little afraid due to corona now but if he is tired and stays at home that is fine. 

He said that the possibility to winning this fight makes him so positive. So yeah I hope after all that stuff and stress that it will get better. End of April they will check how the liver is. I hope the cancer responds well. 

Until then I will pray every day and if I forget, I have so nice friends who do pray for my dad.

So yeah we have to see but it is at the moment at a good state

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