It grows and grows and grows

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  • worriedson714
    worriedson714 Member Posts: 333 Member
    edited April 2021 #22
    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

    Cimetidine

    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
    Tueffel Member Posts: 327 Member

    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

    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

  • Tueffel
    Tueffel Member Posts: 327 Member
    edited April 2021 #24

    Cimetidine

    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 . 

    I will

    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.

  • Tueffel
    Tueffel Member Posts: 327 Member
    PamRav said:

    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

    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

  • SnapDragon2
    SnapDragon2 Member Posts: 714 Member
    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

    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
    Tueffel Member Posts: 327 Member

    IV vitamin C is the biggest

    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.

    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. 

  • SnapDragon2
    SnapDragon2 Member Posts: 714 Member
    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

    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. 

  • MandiePandie
    MandiePandie Member Posts: 109 Member
    edited April 2021 #29
    Damn

    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
    Tueffel Member Posts: 327 Member
    edited April 2021 #30

    Damn

    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. 

    Thanks

    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
    worriedson714 Member Posts: 333 Member
    good to hear

    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
    flutemon Member Posts: 41 Member
    HOPE!

    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
    Tueffel Member Posts: 327 Member
    flutemon said:

    HOPE!

    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!

    Thank you

    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
    Mary_Kat Member Posts: 4 Member
    edited April 2021 #34
    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. 

  • Tueffel
    Tueffel Member Posts: 327 Member
    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. 

    Sorry

    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
    abita Member Posts: 1,152 Member
    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

    I am so sorry for your loss and pain.

  • PamRav
    PamRav Member Posts: 348 Member
    edited April 2021 #37
    To Mary Kat

    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
    worriedson714 Member Posts: 333 Member
    edited April 2021 #38
    mary kat

    so sorry for your loss 

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    edited May 2021 #39
    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'm sorry this happened to

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

  • Staypositive1971
    Staypositive1971 Member Posts: 13

    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 feel for both of you

    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

  • Staypositive1971
    Staypositive1971 Member Posts: 13
    edited May 2021 #41
    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’m so sorry

    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