It grows and grows and grows

Tueffel

Hey,

My dad is now after 2nd liver surgery, had CT and MRI this week. The cancer is again in the liver. I dont know how big the lesions are, they were probably too small to be detected during the PET. Now they are big enough to identify. 

For now surgery is not on the table. On Tuesday they will discuss about other treatment methods. Maybe chemo only to the liver? Was it called Hipec? 

I am thinking about a 2nd opinion and discussing clinical trials.

I was so positive. I thought maybe some chemo but the cancer thinks otherwise. 

This is the first time for a long time that I really think that we cannot win. I am afraid and the only thing I wish for is that he will be here next year for my graduation. I only want that now. 

For me it is a rough time, I am not going back till July, 4th May I have oncology final exam, not motivated for that at all. I actually want to burn my notes now.

Only good thing is that both Mama and Papa did good with first corona vaccine dose.

Tueffel

SnapDragon2

HAI pump is for the liver? 

HAI pump is for the liver?  Could that be it?

I really hate to hear about the set back.  Keep your spirits high and always hope and pray for the best outcome.

Turn this news into going in for the test and ace it!

Trubrit

Sorry to hear this, Tuffel

Roll with the feelings, but don't roll too far.  While you are definitely allowed to feel the 'gut punch', and take yourself to the dark place, don't stay there. Lift your head, lift your sights, and become that positive person again. You need that, and your dad needs that - not that I think you are allowing your dad into your sorrows, but he may sense it. Parents are canny in that way. 

And I agree with Snapdragon - go and ace that test. Let this give you strength and determination. Say the right things, write down the answers they want, then think how YOU could change something in the future. Make it better in some way - a small way is better than no way.  

We are all here for you, and through you, your father. 

Tru

SandiaBuddy

Frustration

Frustration is inevitable, but you also must live your own life.  I am confident both of your parents will be very proud when you suceed in your exams and graduate.  To me, it is important to care for others, but to also care for yourself.

worriedson714

So sorry to hear this

I was really hoping your dad had this beat I will continue to pray for you and your dad that they find some treatment that will work .

Tueffel

SnapDragon2 said:

HAI pump is for the liver? 

HAI pump is for the liver?  Could that be it?

I really hate to hear about the set back.  Keep your spirits high and always hope and pray for the best outcome.

Turn this news into going in for the test and ace it!

Yes HAI

Yes it was HAI pump. I dont know but I confused it with something else. My dad said that they will discuss it. Tbh not a huge fan of it. There were some not good stories in here and apparently it gets more complicated with KRAS.

We only had minor setbacks but otherwise everything went well until this. Now I am even more scared. Even though it was hard, we always had the word cure at the end of the road. Yes it was far away, barely visible but now I dont know if we will ever get there. 

We will see. For now I dont want to study anything about it. I only want to see what Tuesday will bring.

Thank you for your words! I do hope that we will get it back.

Tueffel

Tueffel

Trubrit said:

Sorry to hear this, Tuffel

Roll with the feelings, but don't roll too far.  While you are definitely allowed to feel the 'gut punch', and take yourself to the dark place, don't stay there. Lift your head, lift your sights, and become that positive person again. You need that, and your dad needs that - not that I think you are allowing your dad into your sorrows, but he may sense it. Parents are canny in that way. 

And I agree with Snapdragon - go and ace that test. Let this give you strength and determination. Say the right things, write down the answers they want, then think how YOU could change something in the future. Make it better in some way - a small way is better than no way.  

We are all here for you, and through you, your father. 

Tru

Thank you

Thank you for your kind words Tru! I will feel better when I know the plan but this was I think a bigger punch than everything before. We always had cure at the end of this journey and now I think that this is off the table. Now we only have prolonging the life. The bad word palliative also crossed my mind. I think I was never so scarred. It will take me a long while to process it. It is good I am not at home, so my parents would not worry soo much about my tears. 

I have a lot of friends here who were/are in a similar position. They offer to come and hug me when I need it. 

Oh believe me I called them today when my tears were dry and they could not hear it. At least I hope so. So yeah I am trying to be them positive again cause my dad also needs his time to process. Process that he might not win or that he will battle for a long time. 

But were not out of option yet, even though the HAI pump sound scary. 

You want me to kick cancers butt by acing the test, huh? We will see. For now I cannot look at the word neoplasm. 

I told my dad stories from survivors here, especially NewHere, even it is hard there are people who battle cancer for a long time. 

Thank you!

Tueffel

Tueffel

SandiaBuddy said:

Frustration

Frustration is inevitable, but you also must live your own life.  I am confident both of your parents will be very proud when you suceed in your exams and graduate.  To me, it is important to care for others, but to also care for yourself.

Frustration

Frustration is part of life? Life doesnt always go the way you want to. It is life, its frustrating scary but beautiful. 

It is the reason I am not travelling back now. They are proud of me, worked hhard for it and they dont want me to fail classes due to Papas cancer. "Dont mess up your studies", was the first sentence my mom said to me after diagnosis. I just have to rely that teachers are nice, bring easy questions. For now no studying but working on not crying. 

I am happy that my mom is there. Papa had a huge support system. They are there for us.

Thanks for Your words.

Tueffel

Tueffel

worriedson714 said:

So sorry to hear this

I was really hoping your dad had this beat I will continue to pray for you and your dad that they find some treatment that will work .

Thanks

Thank you! Can you ask him to forgive for some bad words I said to him yesterday? I was basically praying a whole year that the cancer is not coming back and there it is, still alive. If cancer would be a person, life would be do much easier. 

Yeah, a lot happening was positive, but this is very scary. I think for now they will just prolong his life and not cure him. This possible change is scary and nothing I ever wanted to happen.

Tueffel

worriedson714

Tueffel said:

Thanks

Thank you! Can you ask him to forgive for some bad words I said to him yesterday? I was basically praying a whole year that the cancer is not coming back and there it is, still alive. If cancer would be a person, life would be do much easier. 

Yeah, a lot happening was positive, but this is very scary. I think for now they will just prolong his life and not cure him. This possible change is scary and nothing I ever wanted to happen.

Tueffel

Your not alone in that

                      Yes I will and I am sure your dad will forgive you also I have done it as well gotten way to frustrated with my dad for not doing treatment and now he isn't eating . While I am sure it's much worse to be the patient with the cancer it's also for hard to have a parent that has this nightmare plague . The helplessness and the fact that we can do nothing to make it go away is a hard thing to face . I am sure it is scary but as you know people can live a long time with it also . I know that doesn't make you feel better cause it doesn't me either when I think about my dad but you know it's true . 

          For now I would just focus on spending every moment you can with your dad don't let the frustrating moments you feel guilty about steal those good moments that I have learned to treasure . Cause I have learned thats the most important thing is taking those moments and really being present and enjoying them with our dads cause sometimes that and pray is all we could do . I will continue to believe and pray our dads will make it threw this I have to believe that .It really would be much easier if I could just punch cancer in the face as I am sure you want to I would poke cancer in the eye also . Sorry I typed so much things been hard for me also it's nice to talk to someone who gets it message me anytime if you need to talk . 

    

Tueffel

worriedson714 said:

Your not alone in that

                      Yes I will and I am sure your dad will forgive you also I have done it as well gotten way to frustrated with my dad for not doing treatment and now he isn't eating . While I am sure it's much worse to be the patient with the cancer it's also for hard to have a parent that has this nightmare plague . The helplessness and the fact that we can do nothing to make it go away is a hard thing to face . I am sure it is scary but as you know people can live a long time with it also . I know that doesn't make you feel better cause it doesn't me either when I think about my dad but you know it's true . 

          For now I would just focus on spending every moment you can with your dad don't let the frustrating moments you feel guilty about steal those good moments that I have learned to treasure . Cause I have learned thats the most important thing is taking those moments and really being present and enjoying them with our dads cause sometimes that and pray is all we could do . I will continue to believe and pray our dads will make it threw this I have to believe that .It really would be much easier if I could just punch cancer in the face as I am sure you want to I would poke cancer in the eye also . Sorry I typed so much things been hard for me also it's nice to talk to someone who gets it message me anytime if you need to talk . 

    

Thanks

Thanks! I was just really frustrated in god yesterday. You do understand it, so I am grateful. You really feel helpless when the only thing is that you pray. I am a scientist, more or less, but still I hope there is a superior power that will help cancer patients like your or mine Papa. 

Papa was feeling so good these weeks so it is huge stress. I cant really help you with the eating thing, sometimes I dont know how to even help my dad. I only do research and check and yeah sometimes it helps, sometimes not. I have been trying to tell him about cimetidine but my parents just told me not to worry. "The doctors know" - it is frustrating really. 

Will the next months be easy here or for dad? Maybe not but you know if they are painfree and have more and more months I dont care. I am sure that we will find the good spirits again. I found a really interesting article and yes I am hoping for this outcome even though HAI and KRAS dont like each other. 

My parents want me to continue my studies so the next weeks till July I will be several km away from them. I am trying to help with talking to my teachers, getting an insight into oncology, knowing what to look for. 

Poke an eye? Thats nice, I thought of more cruel things... you know rather scratching out.

I unfortunately cant help you with your problems. I am so not a doctor but talking to someone who knows how scary it is, always helps me and I hope it helps you, too. But then because we are in the same position it always hits different to read your posts..

Let us hope and pray that all things turn out good.

Tueffel

beaumontdave

Tueffel said:

Thanks

Thank you! Can you ask him to forgive for some bad words I said to him yesterday? I was basically praying a whole year that the cancer is not coming back and there it is, still alive. If cancer would be a person, life would be do much easier. 

Yeah, a lot happening was positive, but this is very scary. I think for now they will just prolong his life and not cure him. This possible change is scary and nothing I ever wanted to happen.

Tueffel

If trashing and cursing the

If trashing and cursing the Almighty brought penalties, I doubt I'd be here, lol. I'm sure I wore out the harshest language I know when the cancer showed up in my liver again. If I'm honest with myself, I'm still angry about what happened to Cindy, mercifully ended Apr. 30, six years ago. Your allowed your feelings, use them all, get it out, and get your focus back. Any being big enough to run it all, isn't worried about a tiny being's natural responses. Get reset, and help your folks get their minds trained back on immediate goals, daily tasks and things they enjoy, not on the long term things. Let the future sort itself out, that's my view because that's how I got through the hard stuff. Hang in there..........................................Dave

PamRav

Hello

So sorry that your dad has to fight this battle.  he's fortunate to have such a supportive daughter.  Maybe your dad will be cured and maybe not, perhaps dont spend too much time ruminating on that.  I was never in the curable category, from day one my doctor told me that this would be treated like a chronic illness.  I have metastatic lesions in my lungs and liver that come and go. I'm on chemo for a while and then I'm off for a while. Chemo is no fun but I still am able to enjoy my life.  Maybe the absolutely best thing you can do for your dad is ace that  exam! I know you can do it!
all the best

pam

SnapDragon2

Tueffel said:

Yes HAI

Yes it was HAI pump. I dont know but I confused it with something else. My dad said that they will discuss it. Tbh not a huge fan of it. There were some not good stories in here and apparently it gets more complicated with KRAS.

We only had minor setbacks but otherwise everything went well until this. Now I am even more scared. Even though it was hard, we always had the word cure at the end of the road. Yes it was far away, barely visible but now I dont know if we will ever get there. 

We will see. For now I dont want to study anything about it. I only want to see what Tuesday will bring.

Thank you for your words! I do hope that we will get it back.

Tueffel

I agree, KRAS is very

I agree, KRAS is very complicated.  I carry KRAS also and research like mad.

Study and ace the test.  Make your parents even more proud!!!

Tueffel

SnapDragon2 said:

I agree, KRAS is very

I agree, KRAS is very complicated.  I carry KRAS also and research like mad.

Study and ace the test.  Make your parents even more proud!!!

Another surprise

Another surprise today was when my dad told me "it was not nice to hear on the phone that they are running out of options". Which KRAS mutation do you have? There are some "nicer" ones apparently. My dad of course has according to research the nastiest. 

For now I cant study and I wont till Tuesday after the talk. I wrote to the professor at my university and he is a good guy. But after todays message I feel bad again. 

Tueffel

PamRav said:

Hello

So sorry that your dad has to fight this battle.  he's fortunate to have such a supportive daughter.  Maybe your dad will be cured and maybe not, perhaps dont spend too much time ruminating on that.  I was never in the curable category, from day one my doctor told me that this would be treated like a chronic illness.  I have metastatic lesions in my lungs and liver that come and go. I'm on chemo for a while and then I'm off for a while. Chemo is no fun but I still am able to enjoy my life.  Maybe the absolutely best thing you can do for your dad is ace that  exam! I know you can do it!
all the best

pam

Thanks

Thanks but I would feel better if I could be there. But then they dont see my tears that way and only hear me saying positive things to cheer them up. My Papa told me today that there is not much left what they can do. Terrible to hear but we only had Folfox as chemo for now. Still it is scary. The cancer is there and was not there Jan this year in PET. I dont want to know how many tumors there are or how big but I also need to know how they will continue. 

Why did your doctor say "chronic disease"? How did he identify it this way? I read your page and just what I read does not seem like it.

Papa said he has a beautiful life, he doesnt want to give up. But now we have maybe a line where it ends.

I wont study till Tuesday. Not in the mood.

Tueffel

Tueffel

beaumontdave said:

If trashing and cursing the

If trashing and cursing the Almighty brought penalties, I doubt I'd be here, lol. I'm sure I wore out the harshest language I know when the cancer showed up in my liver again. If I'm honest with myself, I'm still angry about what happened to Cindy, mercifully ended Apr. 30, six years ago. Your allowed your feelings, use them all, get it out, and get your focus back. Any being big enough to run it all, isn't worried about a tiny being's natural responses. Get reset, and help your folks get their minds trained back on immediate goals, daily tasks and things they enjoy, not on the long term things. Let the future sort itself out, that's my view because that's how I got through the hard stuff. Hang in there..........................................Dave

Feelings

I am very sorry for your loss. I understand all feeling also the ones to god. I am not that spiritual but I think why he does that. What did my dad wrong? He already has the MS which was never easy for him. Now this comes when even doctors are running out of their option. I am just crying since I heard that from my dad. He did not tell me before. I am grateful that I can sleep but eating not a lot at the moment and I need to occupy myself. 

At this moment I think we should only think some months ahead like not father than 4 months maybe? Maybe Christmas is already to far away? It is hard to think for now, to get back there. I am pulling it together for the talks with my parents. They should not worry about me. 

But I will try my best.

Tueffel

SnapDragon2

Tueffel said:

Another surprise

Another surprise today was when my dad told me "it was not nice to hear on the phone that they are running out of options". Which KRAS mutation do you have? There are some "nicer" ones apparently. My dad of course has according to research the nastiest. 

For now I cant study and I wont till Tuesday after the talk. I wrote to the professor at my university and he is a good guy. But after todays message I feel bad again. 

Almost the rarist of rare <1%</b>
Almost the rarest of rare <1% Q61H 
What is your dads?

Tueffel

SnapDragon2 said:

Almost the rarist of rare <1%</b>
Almost the rarest of rare <1% Q61H 

What is your dads?

Okay

Okay I never heard of it. My dad has G12V. During my recent research I read that G12C and D are like the wild type more or less. G12V is the most aggressive ... How the cancer is right now I am not surprised.

 

PamRav

Chronic

Because I wasnt ever going to be cured, but that we would keep treating it as long as it responded.  What is happening now with me it that Im on the chemo for 6 months then off till it reappears. We are playing a game of whack a mole , if you know what that is.  Currently Ive been off since December. I get scanned every two or three months. Next scan due the end of May.  Right now I feel terrific, except for the neuropathy in hands and feet from folox regime .   Ive been on both Folfox and Folfiri and had radiation to my lungs (which didnt work very well).  of course you are sad and worried for your papa, and rightfully so.  I just wanted you to see that some of us live quite a long time with this disease.  Take care of yourself. The mworld needs compassionate  people such as yourself to be the doctors of the future.  
Hugs to you

SnapDragon2

Tueffel said:

Okay

Okay I never heard of it. My dad has G12V. During my recent research I read that G12C and D are like the wild type more or less. G12V is the most aggressive ... How the cancer is right now I am not surprised.

 

Cordyceps is a good

Cordyceps is a good synergizer to chemo for your dads mutation.  And aspirin keeps Maspin high.

I don't know how to post the link to the study but here is the title to search for it

Cordyceps militaris Grown on Germinated Soybean

Suppresses KRAS-Driven Colorectal Cancer by

Inhibiting the RAS/ERK Pathway