It grows and grows and grows

Tueffel said:

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

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 said:

Didnt

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

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 said:

Added

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. 

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. 

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!

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. 

Mary_Kat said:

HAI pump

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. 

I am so sorry for your loss and pain.

so sorry for your loss 

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 . 

    

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