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Terrible August

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

So, we did not gdt good news. The disease is progressing. It might be in the lung. They want to change Avastin to another one, otherwise Lonsurf. Keytruda is not an option. We are searching for 2nd opinions. Cure is not an option. CEA is 80, the highest ever. We are all crying. There is not much anymore to do...

 

abita's picture
abita
Posts: 1069
Joined: Dec 2017

Are they changing Avastin to erbutix? If so, that got rid of my liver tumors, and kept my lung tumors stable for 2 years, with minimal side effects.

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

Erbitux is not possible. My dad has KRAS, so its off the table. I think they will try now Cyramza(ramucirumab). I didnt get the full name. But yeah they might try this with folfiri. Amd no Folfiri,Lonsurf. But I will try to contact different hospitals even around the world. I will also ask if Folfox might be good again. 

worriedson714's picture
worriedson714
Posts: 325
Joined: Dec 2019

So hard to read this all I can say is sending prayers and well wishes to you and your family your such a good daughter to not be giving up there's always hope as you know . 

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

Thanks for your words. This is terrible. You are just worried what happens if the chemo fails. I dont know where to get hope now. It is just crying...

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

That your family is going through all if this.  I think i have the same mutation as your dad, G12V, and unfortunately there arent so many drugs for us. I am doing FOLFIRI now,  have done it previously a few years ago. Praying it works.  I did FOLFOX last year which gave me bad neuropathy  maybe the best thing to do is be with him as much asyou can, and when you cantbe there in person zoom or face time   Try to be present with each and every moment.  Dont give up, we never know whats around the corner that may help.  
sending you hugs 

 

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

The mutation is hardcore kind of. My dad had  the foundation one testing and besides the kras mutation he has many more mutations that just act synergistic with each other. 

I dont know what they are planning but I dont know if Folfiri with another antibody helps. I will call and ask about a discussion about doing folfox. It helped last year and I dont know about resistance. Otherwise only Lonsurf is left. It is the scary thing when treatment options are running out. 

At the moment it just hurts. I love my dad and knowing time is running up is just terrible. I grew up in this house, my dad as well. So everything reminds me of him. Its hard. 

At the moment I just want to cry. 

Tom M.
Posts: 212
Joined: May 2019

I got the same results last week. I know the pain in your heart right now. My lungs have improved allot but my liver is progressing. I will keep you and your Dad and family in my prayers. I know your Dad is worrying about you all, that's what dad's do. Iam going through the same feelings about my family. Peace be with all of you.

Tom M.
Posts: 212
Joined: May 2019

Ask about Lonsurf & Avastian.

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

Thank you Tom. Dads are something special. He consoled me today, saying again and again how helpful I am. I feel like a bad daughter cause he is consoling me. It should be the other way around. But I could not be the strong one today. I am crying for 23 hours now, was not eating for 24 hours. My family is my everythibg, the constant in my life. 

Considering you are going through the same with your liver: what are your doctors planning to do with it? 

Thanks for the Lonsurf Avastin. I will call tomorrow and ask for them to discuss Folfox. Yes there were not many months in between the last Folfox and the recurrence but last year on Folfox we had a partial response. Folfiri no response, so even though the side effects are worse than Folfiri. I think they should discuss it. 

 

Ruthmomto4's picture
Ruthmomto4
Posts: 706
Joined: May 2013

This is big stuff, so cry if you need to. But please don't guilt yourself you have always been there for your Dad and he knows this. No guilt! I am sorry you got bad news i hope you get some good news soon, as long as he is alive there is always hope. 

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

Thank you for your post. Atm I dont know how to handle it. Last year everything was like they wished, this year nothing. It is just bad surprises after another. It is terrible to see when the 2nd line therapy fails. How can I hope for something else when the next therapy is the last one, or if the next one has such one changed component. My dads cancer is more than anything else designed to kill him and atm I dont know how long I have him. I read once with this ras mutation my dad has overall survival is 30 months. I dont know if we have this year. 

Atm we are just vegetating, not real hungry, motivated to do something, able to sleep. This news ruined a lot. My dads wants to fight but death is at the end of it. Thats sure, the cancer is so mean, so aggressive. I feel jealous that people have a drug for some circles more than 5. So yeah our GP will come for these "do not recuscitate" paper etc. 

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