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2nd opinion tomorrow

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

We will get a second opinion from an university cancer clinical center tomorrow. They took our neighbor under their wing, hopeless case for others doctors, and these doctors cured him. Maybe they will give my dad time? I dont know but after these last weeks: progressive disease, peritoneal mets and surgery (which was already a positive surprise fir the doctors that Papa felt so good after), I still hope but I am afraid I will be disappointed again. 

Cross your fingers and/or pray that they will find something afainst this cancer.

 

Take care

Silvia

suzycruise76's picture
suzycruise76
Posts: 148
Joined: Mar 2019

I am sending all my good thoughts a well-wishes to your Papa and yourself. I am following your fight against cancer even though I have not been posting lately. I am originally from the Czech Republic,and we hold the thumbs for good luck the way Americans and Canadians cross their fingers....so I am going to do bothWink for you tomorrow.

All the best,

Suzy

abita's picture
abita
Posts: 1069
Joined: Dec 2017

Hoping you get some hope and treatment options

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

My dad felt good there. The problem was my expectations, I was hoping for somethng more. I was too hopeful and got crushed. There is no hope. My father who I love more than anyone else in the world cant be cured, the aim is now to control the disease, limit the cancer symptoms and that he has a good quality of life. It is palliatve.

I am scared. Folfox worked 3 or 4 months, then they already checked again because somethng was strange. Folfiri with Avastin didnt work at all, he had it 6 times. They proposed Lonsurf but let us be honest why should that work longer than 3 months. The others didnt so why should this drug give me a year or so with my Papa? 

It is simple not fair that I will loose my perfect Papa

Trubrit's picture
Trubrit
Posts: 5509
Joined: Jan 2013

what will that extra year be like for your Papa? 

There comes a time for some - not everyone, when you have to decide on what the quality of your last days, weeks, months, will be like on or off chemo.

My first question, when first diagnosed was, how much time do I have, and do I want to spend it with miserable chemo side effects?

No matter how well we think we can prepare for the death of our loved ones, at the end of the day, we will be crushed. - my beloved mother-in-law is 93 and failing fast. We THINK we are prepared. We talk about life without her. But we all know that when it happens, we will hurt just as if she had passed suddenly.  

No amount of 'they are out of pain'  'they were a good age', helps the hole left in our lives, when someone we love has passed. 

Enjoy every momemnt, which could amount to years, with Papa. Make memories, good ones, and know that your heart will hurt whenever the inevitable comes to pass. 

Thinking of you. 

Tru

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

I am very sorry to hear this.  Have you considered and researched chronomodulated xeloda with IVC?  IVC kills kRAS mutant cells.  Research vitamin C and interferons. 

Of course other things to such as PSK.

Just a thought here.

worriedson714's picture
worriedson714
Posts: 325
Joined: Dec 2019

So sorry to hear this you and your dad will be in my prayers as always please don't beat yourself up about being to hopeful . This all is so unfair sometimes hope is all we have and there is always hope . I know I am being to hopeful right now as well my dad's oncologist says the chemo will just control the cancer . But still I remain hopeful it will shrink the cancer cause hey after all does any oncologist really know how a patient will respond to treatment ? I don't think so at the end of the day most of this is all in god's hands and as long as it's in god's hands there is always hope . Enjoy every moment with your dad and I truely hope you will be making memories with him for a long long time you deserve it . 

beaumontdave's picture
beaumontdave
Posts: 1170
Joined: Aug 2013

All my best hopes and thoughts for your pop, and you...............................Dave

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

Monday we will have a video call for the 3rd opinion from Charité. My hopes are up again.... But I think we are on the safe side. If they would do Lonsurf as well like Hamburg did, we will have the best option available for us. 

Thank you for all your nice words and crossing fingers etc. I dont answer to everyone anymore to not spend so much time with cancer but I appreciate it a lot.

Silvia

DanNH's picture
DanNH
Posts: 155
Joined: Feb 2021

The thoughts and prayers of so many of us are with you both Silvia...

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

So, each day after he got out of the hospital my Papa got better. Now we had 3 steps back: during the weekend he had diarrhea. We are checking the stool if there are any bacteria causing it. Mom and me also had it but we are getting better, besides we did not have a surgery to save our life. So of course this infection pulled Papa down a lot. You can imagine how it would be. Luckily we avoided the hospital even though the GP thought about it.

So our dilemma is: Papa doesnt know what to eat to avoid another ileus, diarrhea, he is afraid of pain. He wants to get better I know that but he cant get better if he is afraid to eat because his still sensitive colon might have other ideas. So, our GP who worked in oncology got to know the problem and proposed parenteral nutrition via his port. This way he will get his calories, his energy without the fear of fiarrhea or ileus. We will probably have parenteral nutrition during the night and during the day Papa can eat what he wants and knows he will gain weight and strength. Of course the last few weeks were not perfect but this way he doesnt have the pressure that he needs to eat to get better while not thinking about all the side effects it can cause.

We will also try some physio at home. Atm we really need Papa to grt better again. It is really frustrating, he got better and then diarrhea... and I dont want him to do Lonsurf when he is like that. So yeah hopefully with all the help we are getting now Papa will get stronger to fight the disease.

Silvia

Real Tar Heel
Posts: 253
Joined: Nov 2019

Hey

Diarrhea is common with any mCRC treatment. For me, it comes and goes, not ashamed to say. I would be concerned if a doc told me that it was an infection causing the diarrhea and not the treatment. Also, if they think it's an infection, are they treating the infection? I would think they would aim at the cause and not the symptoms.

 

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

He never had diarrhea before, unfortunately we all had diarrhea. I took a pill and then it got better but even after the pill my abdomen was growling and gurggling for 2 or 3 days. You can imagine how that is for Papa. An infection with diarhhea 2 weeks after an abdominal surgery...

We are now using different things to stop the diarrhea also if that gets better hopefully Papa will get hungry again. I am making smoothies for him so he gets something. Atm the strength is not big he even has problems to keep his body temp. So the latest Tuesday he will get additional parenteral nutrition during the night. Hopefully earlier. Today he said he doesnt want to die due to diarrhea.

 

Real Tar Heel
Posts: 253
Joined: Nov 2019

Ah, okay, they are treating the infection after all. That's a relief.

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