TACE ahead of us

Tueffel
Tueffel Member Posts: 319 Member
edited April 2021 in Colorectal Cancer #1

So, 

During this week we good a new information how they want to treat my Papafurther and prolong his life. Cure is not an option anymore unfortunately. I thought I am used to it due to his MS but this is more scary.

According to my dad there are 5 to 6 liver metastases there. They were not visible during PET scan at the end of Jan. The procedure they want to do is called TACE, maybe someone heard of it and know someone who had it. They give chemo directly to the liver arteries and then they close the artery. So how I understand: the metastases is getting a batch in chemo. They dont know if it will work and how good. If they reach the tumors easily, everything works fine and my dad stays in a healthy condition, it might go on like this for many years according to my parents. But they are prolonging his life to wait for new medication. Gamma glutamyl transferase as well as bilirubin are increased. LDH is also increased. The CEA is back to 30. I remember in July 2020 it was below 1. I kind if wabt that time back. The procedure is just scary to read because it mentions "palliative".

According to the doctors the tumor is highly aggressive and they never saw a cure, still they are not giving up or provided us a window how long Papahas. There is a high possibility that the cancer will occur outside the liver in lungs or lymphnodes. If so the chemo will have irinotecan. It is scary because I read that overall survival in Papas KRAS mutation is 30 months. We already have 15 months and the 30 months could be over during my 28th birthday. 

2nd opinion: no problem. They will send it to different hospitals. I can also call the doctor to discuss it later with my professor. 

I also read that dimethyl fumarate, a medication my dad was using against his MS, showed in lab cytotoxic potential against his KRAS mutazedcells. So I hope they put him back on it. 

I did study some oncology today, it was terrible but I powered through. Still I hate it. 

Tueffel

 

EDIT: according to my professor the values are detoriating and it does not look, even for systemic chemo. Atm the professor would say the prognosis looks "grim".

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Comments

  • Real Tar Heel
    Real Tar Heel Member Posts: 290 Member
    edited April 2021 #2
    There is a big money push

    There is a big money push behind mRNA-based targeting therapies for kRAS mutations. I don't know if that means as an add-on to chemo or something completely separate, but search for Merck and Moderna partnering on the research. Add that to the researcher who pioneered the COVID vaccine for them saying they were a couple of years away from a cancer vaccine, there is some hope out there. To me, chemo is just like amputation or leeching, but it is what we have right now. Cancer fight will be empowered by knowledge of what really causes things.

    When I was a 3L in law school, my brother was in his final days as an AIDS patient. It was impossible to focus even though I acted like I was participating, I was not really all there (but I'm easily distracted anyway, lol). Don't be too hard on yourself as you are trying to accomplish something important. You will be of value to a lot of people someday.

    btw: my aunt and mom have found out about TACE and are asking me to look into it as you did.

  • Tueffel
    Tueffel Member Posts: 319 Member

    There is a big money push

    There is a big money push behind mRNA-based targeting therapies for kRAS mutations. I don't know if that means as an add-on to chemo or something completely separate, but search for Merck and Moderna partnering on the research. Add that to the researcher who pioneered the COVID vaccine for them saying they were a couple of years away from a cancer vaccine, there is some hope out there. To me, chemo is just like amputation or leeching, but it is what we have right now. Cancer fight will be empowered by knowledge of what really causes things.

    When I was a 3L in law school, my brother was in his final days as an AIDS patient. It was impossible to focus even though I acted like I was participating, I was not really all there (but I'm easily distracted anyway, lol). Don't be too hard on yourself as you are trying to accomplish something important. You will be of value to a lot of people someday.

    btw: my aunt and mom have found out about TACE and are asking me to look into it as you did.

    The goal

    The goal is such a specific drug that will probably only work on the cancer in the persons body and for no one else. 

    I do hope that the mRNA technologywill give us a big step in medicine. I read a few articles in the next weeks how this covid vaccine will influence the big pharma companies to invest, to compete against each other. For now there were this 2 big companies, moderna and biontech, and biontech recently proved in mouse models that themRNA technology could also help in MS so that the mistaken immune system relearns that the nerbous tissue is not bad. The oncology due to the success of the mRNA vaccines will only get a boost. I like to think that when I retire from my job everything I learned will be so outdated. Maybe cancer will be like hypertension, dsily a pill, some scans and then you just live your life? But then we will have other diseases. 

    Thank you for your words! This week is especially hard: onco with my dad, studying onco and in class we have children with cancer. All bad! But HIV is a good example of medical progress in the last decades. Yes it is not curable bitnowdays due to the new drugs you can sleep with someone unprotected and still not infect this person. 

    I dont want to push you into this direction but the approach: we treat the liver regionally and if it spreads we will do systemic chemo might not be bad. So yeah ask why it is not an option or where you can do it. Asking is not a bad thing.

  • Tueffel
    Tueffel Member Posts: 319 Member
    1st TACE

    So Papa had his first TACE today. The procedure toook 2 hours, a lot of rubbish and only local anesthesia. Papa was talking with the doctor, a neurosurgeon, who did the procedure about me. Today they did the big metastases and tomorrow they will check. But the doctor was confident that they can manage it. So good news finally! I hope the imagining will show that the tumor indeed got a lot of negative stress and is really small and dead. In 4-6weeks they will do a bunch of them because they are small and close so maybe only one artery is required. Papa will have 4 procedures in whole. 

    He had no side effects, is tired. One time he experienced back pain when they use the catheter to put fluid in, they dont know why but it disappeared after the administration of pain killers.

    I hope tomorrow that the tumor is small. Cross your fingers with me! 

    Tueffel

  • Real Tar Heel
    Real Tar Heel Member Posts: 290 Member
    Tueffel said:

    1st TACE

    So Papa had his first TACE today. The procedure toook 2 hours, a lot of rubbish and only local anesthesia. Papa was talking with the doctor, a neurosurgeon, who did the procedure about me. Today they did the big metastases and tomorrow they will check. But the doctor was confident that they can manage it. So good news finally! I hope the imagining will show that the tumor indeed got a lot of negative stress and is really small and dead. In 4-6weeks they will do a bunch of them because they are small and close so maybe only one artery is required. Papa will have 4 procedures in whole. 

    He had no side effects, is tired. One time he experienced back pain when they use the catheter to put fluid in, they dont know why but it disappeared after the administration of pain killers.

    I hope tomorrow that the tumor is small. Cross your fingers with me! 

    Tueffel

    sounds great!

    sounds great!

  • worriedson714
    worriedson714 Member Posts: 333 Member
    edited April 2021 #6
    fingers crossed

    Sounds like so far things went the best the could have so happy for you tueffel

  • danker
    danker Member Posts: 1,276
    edited April 2021 #7
    Papa

    Happy for you!

  • grammadebbie
    grammadebbie Member Posts: 464
    Tueffel said:

    1st TACE

    So Papa had his first TACE today. The procedure toook 2 hours, a lot of rubbish and only local anesthesia. Papa was talking with the doctor, a neurosurgeon, who did the procedure about me. Today they did the big metastases and tomorrow they will check. But the doctor was confident that they can manage it. So good news finally! I hope the imagining will show that the tumor indeed got a lot of negative stress and is really small and dead. In 4-6weeks they will do a bunch of them because they are small and close so maybe only one artery is required. Papa will have 4 procedures in whole. 

    He had no side effects, is tired. One time he experienced back pain when they use the catheter to put fluid in, they dont know why but it disappeared after the administration of pain killers.

    I hope tomorrow that the tumor is small. Cross your fingers with me! 

    Tueffel

    So Blessed that you are

    So Blessed that you are getting some good news.  It just proves that we have to be our own advocate for ourselves and our family.  Praying for your family

  • Tueffel
    Tueffel Member Posts: 319 Member
    edited April 2021 #9

    fingers crossed

    Sounds like so far things went the best the could have so happy for you tueffel

    Thank you

    It is 5am here and I just found the negative studies on pubmed... But yes I hope that imagining will show that the tumor really got his a*** kicked. I also hope that his liver markers will get better soon, so I have less to worry. But for now we wait and see how it worked. Fingers are crossed...

  • Tueffel
    Tueffel Member Posts: 319 Member
    edited April 2021 #10
    danker said:

    Papa

    Happy for you!

    Not yet

    Not yet we can not be that happy. The results will be there later when imagining will show that they got the right artery and the tumor did decrease its size. But I was worried that Papas arteries will be terrible or his liver function will not be sufficient enough for the procedure. But I hope we will get good news again. 

  • Tueffel
    Tueffel Member Posts: 319 Member
    edited April 2021 #11

    sounds great!

    sounds great!

    We will see

    We will see later how and if it worked. But with my professor words I was afraid that they wont do it, or that they cant do it. But the procedure did happen and now the decrease supply and chemo need to do their work. Unfortunately, I only found bad studies about TACE today. During the weekend I found all the good ones, now I am afraid like usual. 

    But I do hope! And it is nice to hear that a doctor sounds confident 

  • Tueffel
    Tueffel Member Posts: 319 Member
    edited April 2021 #12

    So Blessed that you are

    So Blessed that you are getting some good news.  It just proves that we have to be our own advocate for ourselves and our family.  Praying for your family

    Thanks

    Thank you! It is nice to hear that at least one doctor is confident. How the treatment will work we will see soon but I hope that the biggest tumor is now smaller and that Papa stays in a good condition. I want him at my graduation next year.

    I appreciate your prayers a lot. 

  • Tueffel
    Tueffel Member Posts: 319 Member
    Imagining

    I hoped that during todays imagining you could already see how the tumor looks like now. But they only checked if there is bleeding or not. Papa has the typical metallic taste of chemo in the mouth. He feels good and is home now.

    In a month 30th May, they will do a bunch of small ones. They are close to each other so they hope its one artery.

    I do hope that everything went well and the tumor is shrinking now. 

  • DanNH
    DanNH Member Posts: 172 Member
    Tueffel said:

    Imagining

    I hoped that during todays imagining you could already see how the tumor looks like now. But they only checked if there is bleeding or not. Papa has the typical metallic taste of chemo in the mouth. He feels good and is home now.

    In a month 30th May, they will do a bunch of small ones. They are close to each other so they hope its one artery.

    I do hope that everything went well and the tumor is shrinking now. 

    Praying that it works

    It is so wonderful and hopeful that this works in destroying the tumors! We all share in the desire that your Papa is with you at your graduation. The procedure seems like a sound one and I am praying for it's success!

  • Tueffel
    Tueffel Member Posts: 319 Member
    Next TACE this week

    The doctors called. Because the tumor is a fast growing tumor they dont want to do the next TACE at the end of May. They want to get ahead of the cancer because they dont know how the situation might be in 30 days. So the next TACE for the next tumors is scheduled on Thursday already. Papa is fine with it. They can help him. The symptoms of chemo disappeared on Sunday already. They also want to discuss another additional therapy. Papa called it gene therapy, no idea what he means with it. Maybe monoclonal antibodies? 

    I hope the next one will go well and we might see some results soon. 

    PS Tomorrow on Tuesday is my oncomogy exam. Cross your fingers that I am done with it. On some days last week I had to study onco, researched Papas condition and had classes in pediatric oncology. Hopefully one is over soon. 

  • Tueffel
    Tueffel Member Posts: 319 Member
    DanNH said:

    Praying that it works

    It is so wonderful and hopeful that this works in destroying the tumors! We all share in the desire that your Papa is with you at your graduation. The procedure seems like a sound one and I am praying for it's success!

    I hope

    I hope you are right that the tumor is shrinking that it gets kicked in his a**. I really do hope that the treatment works. I have not given up the hope yet that it might work really good and Papa may qualify for RFA or microwave ablation. There is a German doctor they talk about on colon talk who is apparently known in the US. When I contact Papas oncologist, I will ask if they can send the info there without Papas knowledge ;) 

    For now I am happy that it does not influence him so much like chemo does. He is fitter after a minimum of time. Still I cant wait to be home and hug my dad. 

  • Tueffel
    Tueffel Member Posts: 319 Member
    Some bad news

    Papas oncologist talked today to Papa. During the first TACE and the CT the number of liver metastases increased, with the fact that the tumor is only in the liver,they dont feel confident at the moment. They basically dont know what kind of tumor they are treating because it does grow too fast (even for KRAS) I assume and it does nlt act like a colon cancer they know. So Papa signed a bunch of papers, tomorrow they will do a biopsy during TACE, they will grow tumor cells in lab at Roche (?). They are rechecking everything they know because so many things dont fit the initial diagnosis anymore. 

    Papa has no problem to "donate" his tumir to science especially if it might help me and my sister. They will check with several collegues in Germany, experts also, if they have an idea. I am afraid now that the tumor will grow to fast that he might not be there till July when I am done with university. Papa feels good of course the news took him mentally down but he is eating good etc. He want to try everything, trials etc, and we will see how and if it will help. 

  • NewHere
    NewHere Member Posts: 1,390 Member
    Thoughts With You and Your Dad

    I am sorry to read about the news Tueffel, and hoping that the biopsy and testing helps.  

    Here is a trial https://clinicaltrials.gov/ct2/show/NCT04166435  

    Perhaps they can test for this and take a look at the drug combination where your Dad is being treated?  25-40% of people have this.  The drugs are successful for brain tumors and then has been expanded.  It seems that it works on other cancers with this.  

     

  • Tueffel
    Tueffel Member Posts: 319 Member
    NewHere said:

    Thoughts With You and Your Dad

    I am sorry to read about the news Tueffel, and hoping that the biopsy and testing helps.  

    Here is a trial https://clinicaltrials.gov/ct2/show/NCT04166435  

    Perhaps they can test for this and take a look at the drug combination where your Dad is being treated?  25-40% of people have this.  The drugs are successful for brain tumors and then has been expanded.  It seems that it works on other cancers with this.  

     

    Thank you

    It is an up and down here. Last week I was in good mood but the cancer thinks otherwise. This cancer is so strange, something mist be wrong somewhere. 

    I do appreciate that the doctors are not giving up and try their best but hearing that even the doctors dont really know why the cancer acts strange is scary. I hope they will find an answer or find something that helps. But I am just afraid now. I was always sure that my dad will be there in July when I come home, now I am afraid I wont have it. 

    I remember this drug in studying for oncology. I dont know what the doctors plan. I think atm they are just trying to answer questions. It is frustrating.

  • worriedson714
    worriedson714 Member Posts: 333 Member
    edited May 2021 #20
    no words

    So sorry to hear this tueffel sending prayers your and your dad's way hopefully they figure out this tumor . 

  • Tueffel
    Tueffel Member Posts: 319 Member
    edited May 2021 #21

    no words

    So sorry to hear this tueffel sending prayers your and your dad's way hopefully they figure out this tumor . 

    Atm

    Atm the tumor is smarter than the doctors. I hope they find something that might help. I cant do more than that atm which is frustrating