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TACE ahead of us

Tueffel's picture
Tueffel
Posts: 255
Joined: Feb 2020

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".

Real Tar Heel
Posts: 203
Joined: Nov 2019

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's picture
Tueffel
Posts: 255
Joined: Feb 2020

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's picture
Tueffel
Posts: 255
Joined: Feb 2020

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
Posts: 203
Joined: Nov 2019

sounds great!

Tueffel's picture
Tueffel
Posts: 255
Joined: Feb 2020

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 

grammadebbie's picture
grammadebbie
Posts: 464
Joined: Jun 2009

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's picture
Tueffel
Posts: 255
Joined: Feb 2020

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. 

worriedson714's picture
worriedson714
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Joined: Dec 2019

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

Tueffel's picture
Tueffel
Posts: 255
Joined: Feb 2020

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...

danker
Posts: 1282
Joined: Apr 2012

Happy for you!

Tueffel's picture
Tueffel
Posts: 255
Joined: Feb 2020

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's picture
Tueffel
Posts: 255
Joined: Feb 2020

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's picture
DanNH
Posts: 98
Joined: Feb 2021

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's picture
Tueffel
Posts: 255
Joined: Feb 2020

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's picture
Tueffel
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Joined: Feb 2020

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's picture
Tueffel
Posts: 255
Joined: Feb 2020

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. 

Real Tar Heel
Posts: 203
Joined: Nov 2019

I'm sorry to hear this. Let's hope they find something helpful. There is a kRAS mutation trial here for mRNA based treatment. I'm not eligible because I haven't been through all of the standard accepted treatments but your father may be. https://clinicaltrials.gov/ct2/show/NCT03948763

Tueffel's picture
Tueffel
Posts: 255
Joined: Feb 2020

For now even an expert does not know but they want to stop the growth asap. Tomorrow he will get chemo. Todays TACE was without comolications and tomorrows MRI they will check again. I dont know what exactly. But they want to stop the tumor growth. I hope his liver will manage. Our primary doctor is into chinese medicine so Mama will ask what he can prescribe that will boost his immune system and liver function. 

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

YES!  TCM will help.

Tueffel's picture
Tueffel
Posts: 255
Joined: Feb 2020

I do hope so. Since my professor told me that the liver does not look good, I am afraid of his liver failing. So I hope because our GP is up to date with Papas condition that he will give us something additionally to help him during chemo.

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

Reishi at max dose is really good, niacin and milk thistle would be in top 5.

And high dose IVC will help with everything.

NewHere's picture
NewHere
Posts: 1333
Joined: Feb 2015

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's picture
Tueffel
Posts: 255
Joined: Feb 2020

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's picture
worriedson714
Posts: 253
Joined: Dec 2019

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

Tueffel's picture
Tueffel
Posts: 255
Joined: Feb 2020

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

Tueffel's picture
Tueffel
Posts: 255
Joined: Feb 2020

2nd TACE was uneventful. They did not dobiopsy but I think it is still a plan. An expert does not know why it is growing fast right now. Tomorrow they will start chemo to prevent spreading to lungs and stop the growth. Papa is okay with it. I am worried about his liver. It is a lot to take for this organ right now.

I think I passed my oncology exam.

Real Tar Heel
Posts: 203
Joined: Nov 2019

Good news about your exam. I'm sure it will cheer up your dad, I know I'd be chuffed.

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