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It grows and grows and grows

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

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's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

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!

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

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

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

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's picture
Tueffel
Posts: 212
Joined: Feb 2020

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. 

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

Almost the rarest of rare <1% Q61H 

What is your dads?

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

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.

 

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

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

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

I didnt know about this. Do you have more? I found out that one former drug my dad due to his MS has shown in lab a positive response against KRAS G12V. Unfortunately its common in pancreatic cancer... so yeah we are fighting hard against colon cancer which actually would like to be pancreatic

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

IV vitamin C is the biggest anti-metastis for KRASmt.  Do a search for KRAS and high dose IV vitamin C.

I take 75g 2x weekly.

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

I added that to the list. Our primary care doctor might be a fan of it I hope so I hope it will be possible. 

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

I have read in a few papers about maitake and vitamin e compliment IVC, especially for KRASmt.  I do take vitamin e with IVC and recently changed maaitake dose to 1hr before IVC for the extra benefit.

If he considers IVC, it will help him overall feel better, strengthen immune system, lessen HFS troubles, nueropothy, increase appetite, regulate digestion, ect.

He would need the G6PD test to determine deficiency. 

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

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

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

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

SandiaBuddy's picture
SandiaBuddy
Posts: 1167
Joined: Apr 2017

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.

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

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

worriedson714
Posts: 223
Joined: Dec 2019

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's picture
Tueffel
Posts: 212
Joined: Feb 2020

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
Posts: 223
Joined: Dec 2019

                      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's picture
Tueffel
Posts: 212
Joined: Feb 2020

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

worriedson714
Posts: 223
Joined: Dec 2019

I finally got threw to my dad and he now takes cimetidine but it wasn't easy it seems like parents have a hard time taking advice from there kids . I do tons of research on good things that I know will help my dad but he won't have any of it . I know that feeling having your dad not listen to your advice it sucks and hurts and you just don't understand why he won't take the advice . It seems like parents struggle to accept advice from there kids even when there kids are older and in your case going to school to become a doctor . All we can do is take it one day at a time and be thankful for each one it sucks but sometimes that all that can be done . One question why is your dad out of chemo options ? I read in another post that you said he only had folfox . My dad's case in complex as well cause he has neurofibromatosis and they told him he has many other chemo options and he has only done folfox as well . 

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

I will definetely now give a lot of advices, supplements etc that might help chemo or his therapy. If I say I found a study to it, I might be able to convince him. But for now conving to a second opinion is more important. 

I have no idea why they said that. Okay surgery is off the table, and the tumor might be less sensitive to oxaliplatin now (found out today that kras gets resistant to it), but folfiri was not mentioned. We could still try immunotherapy later, trials whatever. I asked my professor and he said there still a few more options. I know there are not 100 but more than 1. 

I can only hope for the best.

Staypositive1971
Posts: 13
Joined: May 2021

I'm so sorry about your pops.... i dont Know what's worse, not doing the treatment and your dad living his last days out somewhat normally or doing treatment and he lives another 10+ but can't eat or fully enjoy life.... keep your head up.. we are all in this together... it's like a nightmare and sadly we aren't waking up.. as you stated your dads are your best friends and he is mine... he is Superman in my eyes and it kills me to see him like this... my prayers are with both your dads

beaumontdave's picture
beaumontdave
Posts: 1115
Joined: Aug 2013

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

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

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

PamRav's picture
PamRav
Posts: 294
Joined: Jan 2017

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

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

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

PamRav's picture
PamRav
Posts: 294
Joined: Jan 2017

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

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

I did read your info. It is interesting cause initially the intention for my dad was try to cure him. Now they run out of option. Your case seems to be very similar, but you had a higher time in between recurrences. I am curious why your doctor said some different than ours. I believe there are some that live really goid with it as a treated chronic disease. 

6 months break from chemo? My dad has his last chemo end of November. Now they are back. But it interesting. He had a break due to the surgeries as well from mid April 2020 till end of July, nothing happened during this time. Cancer is strange, it outsmarts me and I dont like it. 

I realized that the scariest thing about cancer is the survival. You dont have it in other diseases but tbh they are hard too. Dialysis patients dont make it long too, people who had an amputation due to diabetic foot have it bad too. 

If it works as a chronic treatment than I am fine with it. If I have my dad with it, I will have it. For now the world can have a break from me and sometimes I feel I am too compassionate at least I am for cancer.

Thank you for the hugs!

Tueffel

MandiePandie's picture
MandiePandie
Posts: 65
Joined: Dec 2020

I'm sorry for this turn of events. I know you aren't in the US, but is possible to get more opinions from different hospitals? I am just familiar with so many stories of people getting a "no" from one hospital but a yes or a possibly yes after chemo from a different hospital. 

I know how you feel about that test. I'm finishing nursing school and my first lectures after my dads diagnosis was caring for cancer patients, with lung, colon and breast being the focus. Felt like the universe was rubing salt into the wound in my heart. 

I'm hoping you can get some of that positivity back and that your dad gets great results from the HAI treatment. 

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

I did not expected this turn. It is strange to get from curable to non curable. Good thing is that the doctors did not provide something like "you only have this long to live". Maybe my parents missunderstood but they said that if the proposed treatment works good, it can work good for some time (parents said years). But the doctor was clear: the tumor is highly aggressive, they never saw in a similar case that it went away and chances are high that the lungs will also get some. 

Good thing is the doctors had no problem to send the files, cds etc to different hospitals. They discussed that, so I dont know if they are already send and to where. The doctor also wants to call me ans abswer my questions so I can go through it with my professor. I think it is a good sign that the patient comes first. The treatmebt they proposed they can only do because my dad is healthy and the MS is no contraindication. Still I do hope that it will go well. 

Tbh I am just happy that I dont have palliative medicine now. Unfortunately we will have it at the end of the year when we know how the treatmebt works but is it so wrong to not be surrounded by cancer. This week I had radiology. I dont want to see CTs of liver metastases (brain MRI was good that is something I like). Next week we will have some classes in pediatric oncology and then the test. I am so not surprised that I kind of were in a depressed mood the whole time. You might know how it is with everything. I would love to have something else now.

I am working on it. My friend today said that cancer is unpredictable so everything will turn out to be better than expected and I am kind of avoiding the phone call with my dads oncologist for now. We will know more on Friday, if it worked. The last 2 times we always got bad news on fridays.

 

worriedson714
Posts: 223
Joined: Dec 2019

Its good to hear that the doctors provided you with some hope back tueffel seems like alot of doctors forget how important hope is . And forget that if they take away hope people's worlds crumble down I will be sending well wishs to you and your dad . 

flutemon's picture
flutemon
Posts: 37
Joined: Jan 2019

I had basically the same thing happen after my 2nd (last) liver surgery - almost immediately had a met pop up in my liver.  Then another showed up in my lungs and took HAI pump and other liver only directed treatments off the table.  Folfox, Folfiri, Avastin, Cetuximab have done very little of the past 3 years.  Surgery and sbrt have been my go-to treatments.  We're now trying Lonsurf to get some control.  As long as it was liver only, the oncologist said curative.  But now I'm looking at having a chronic condition that will at some point shorten my life.  I intend to keep at this until there's nothing left to try, and then some!  I just know when I started all of this, there were fewer options and much less knowledge about crc.  I'm holding on to HOPE!!  Hold on to it, too, for your dad!  You never know, a cure or life changing treatment could be just around the corner!

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

I did post an update that Papa will get TaCE or chemoembolization, so liver only. 

I think the most discouraging was that the cancer was just back in weeks with several mets, jumping from cure to non cure was a shock. But I have no read more encouraging words, that it can happen so quick and that there are still options, not several, but there are. 

I do hope that the treatment, TACE, will work good, that his markers will be good again, that the cancer dies, I am praying for that and more. Papa is fit, has appetite, tomorrow is the procedure. So if it gives him time I am all in. Oncology is unpredictable and even though the doctors said that they cant cure him, that it is will be chronic, I hope for this 1 out of million exception that it will work good.

Thank you for your words! 

Tueffel

Mary_Kat
Posts: 4
Joined: Mar 2021

I will throw in my two cents on the HAI pump. My husband was diagnosed stage IV, cure was not an option at diagnosis due to the amount of mets in his liver, with one giant one smack in the middle, restricting his biliary tree. He went through all the chemo drugs for two years. His doctors then brought up directed liver chemo via the HAI pump last fall. He had the surgery to place the pump in December. And then battled with infections for the next 4 months. They could not get control of the infections, removed the pump without ever using it. He continued to deteriorate and could not beat all the infections that continued to wreak havoc on his body along with other complications. His body finally could not take anymore and he passed away in my arms last Monday. I wish we had never pursued the pump. I don't know if he would have still had the infections due to his biliary complications or not. But I think the stress the surgery put him through made things worse. Sorry, I don't mean to be doom and gloom. But right now, that's what I'm living in. Trying to make it through each day without my husband. He was only 40 years old, and we've been robbed of the rest of our lives. I hope for you and for your dad, that his journey goes better. 

Tueffel's picture
Tueffel
Posts: 212
Joined: Feb 2020

I am very sorry to hear about your beloved husband. 40 is for anyone far too young and you lost him way too early. I am sending you strength for this time and I hope you have friends and family near you to console you.

I do appreciate your concern and your experience. My dad got a chemoembolization and in a few hours or tomorrow they willcheck how thebiggest tumor looks like now. After reading your experience I am glad that the doctors did not pursue this treatment. At the time I wrote that post I did not know that more than HAI pump exist to treat the liver only.

Thank you for hoping for my dad! I appreciate it

Tueffel

abita's picture
abita
Posts: 978
Joined: Dec 2017

I am so sorry for your loss and pain.

Real Tar Heel
Posts: 175
Joined: Nov 2019

I'm sorry this happened to you and your husband.

Staypositive1971
Posts: 13
Joined: May 2021

Keep your head up.... I'm so sorry for your loss. Don't beat yourself up, you can never predict the outcome. I wish it didn't turn out that way. May he Rest In Peace and may you both meet again one day. I'll keep you in my prayers

PamRav's picture
PamRav
Posts: 294
Joined: Jan 2017

Thank you for your heart wrenching, but honest post.  I am very sorry for the loss of your husband and the pain you both had to endure. I hope that in time you will find peace 

worriedson714
Posts: 223
Joined: Dec 2019

so sorry for your loss 

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