Recent doctors letter

Trubrit said:

Damned if you do, damned if you don't

It really is a mixed bag, knowing and understanding as much as you do.  Having an insight, becasue of your studies, means that the wool cannot be pulled over the eyes - or can it?!!! 

While growth, numbers, tests and more tests all look to be heading the wrong way; it ain't over 'till the fat girl sings. I see no fat girls.

Don't let your advanced knowledge, which we love, when you share it with us, darken your days. Cancer is unpredictable while being predictable. Yeah, my words do not make sense, but Cancer can throw a curve ball in each direction.  Hope and health and a miriad of factors can change the course from bad to good, good to bad.

I wish you were closer to your family, but alas, you are working toward a worthy goal, a worthy career.

Your love for dad, along with the rest of the family, will strengthen him through these times.  None of us know just where the cards may fall, so enjoy life more than worry. 

Tru

 

Knowledge is power they say. Tbh sometimes it just drives me crazy. It can be seen both ways. It is not nice to understand a huge part of it but then how can I be of any help when I dont understand. At least I can double check and explain so my parents can ask the right questions if they want. 

The best way is to just completely ignore it for a while. Especially during practical classes I dont think about it. But yeah sometimes these thoughts come exactly the moment I put my labcoat off. 

I am grateful that we seem to have good doctors who are trying their best. They could just through treatment at my dad but they want to understand the tumor. So yeah I hope that at some point we will get something back that is good. I expect the MRI in 2 weeks to be better, that the chemo showed an effects.

Knowing that my knowledge might give people here a different view or a hint to what to look up for or explain and that people appreciate it, is nice to hear. It helps me more than you cause I need to know how to give knowledge in an understandable way.

It is time that the cards fall to the good side and that we are staying there for some time, preferentially a long time and then the miracle comes. At this moment it is just waiting to see if the treatment works.

At least being away is sometimes easier. I can just cry. But then it would be nice to see my family again. Havent seen them since Jan. 

I am happy that he feels good at least. I know he suffered through a lot already so I am grateful when he can eat, sleep etc. But his goal is to be at my graduation. For this he wants to fight.

Thank you for your words! I will try to follow your advice

Tueffel

worriedson714 said:

blissful ignorance

One of the things I miss the most is my blissful ignorance it's hard to have knowledge sometimes and you have much more then me so I can't even imagin what it's like for you . Just know that your knowledge tueffel has given me so much hope and helped guide me to questions for the oncologist and ways to help my dad . I've learned so much from you and I will always be thankful for that and while your post was alot of bad news cause it's scary to not know what the cancer is going to do may dad's tumor seems the same way . It is at least good news your dad is eating and doing well try to hold onto that . I will be crossing my fingers praying hoping doing it all for your dad that his doctors can figure this out and give you a long time with your dad cause you surely deserve it and so does your dad . 

Tbh the knowledge I needed for oncology exam would have been enough my whole life. But when you start to look there are so many people with cancer. It is scary. 

I miss the times when MS was the biggest issue in our lives. This disease is much more interesting and people rarely die from it. 

I dont know what might be more scary, not knowing or knowing. If I would not know things, I would feel that I could do much better. When I can help, I do read the bad stuff. 

I do appreciate your words that I can help you. I have the feeling I am not doing my best, sometimes I can just translate medical lingo because oncology is complicated. 

Thank you! Your words warmed my heart and I do hope that all praying you, my friends, even my flatmates parents do will help and we do get at one point good news and the doctor figure things out. 

So I got the phone call...

The doctor fears this cancer. Basically everything they are doing is new for them or for the first time in North Germany. They dont understamd why the immune system just lets the cancer grow. They send the liver tissue from the last surgery to other labs because everything could do was normal and typical for colon cancer...  so the culprit might be the MS medication he got. Unfortunately there was then nothing better... Atm no clinical trials in Germany in which Papa would qualify. TACE seems to work. 

Even though Papa is MSS they might want to try keytruda as well cause they cant really say what his immune system is doing so maybe that will have an effect. 

Atm just many if/when and no real facts.

Real Tar Heel said:

I'm sorry, sounds like there

I'm sorry, sounds like there are new questions with every exam, fewer answers. One of the mRNA trials I've seen here for solid tumors will have keytruda combined with the new drug in a test arm, so some are still thinking it can be effective.

My biggest fear is simply that all results will show "normal"colon cancer. My next fear is that they find something that cant be treated... For now we have to wait for the results. This is not nice but for now they will do 4 cycles folfiri before they can say if it works and also do frequently MRIs. 

SnapDragon told me about someone who was MSS and got keytruda. It helped and apparently in a small number of MSS patients it can have an effect. I read something that asmall number of MSS patients might benefit from it.

I think it is sinply to easy giving the MS drug the fault. There are some things that changed compared to last year and the MS drug is the constant in it. Ofc a proper functioning immune system would help but that is not present. My professor said that they should focus more on the future...

I think I will do some research how cancer is in immunocompromised people like after transplants or in Aids. Maybe things can be apllied to Papas case but yeah it is frustrating. 

Tueffel

SnapDragon2 said:

kRAS paper

kRAS paper

Mutant KRAS triggers functional reprogramming of tumor-associated macrophages in colorectal cancer | Signal Transduction and Targeted Therapy (nature.com)

Thanks for the paper!

Unfortunately, this paper stated that the culprit for this progression might be the kras mutation G12V my dad has. So yeah maybe the mechanism this mutation started increases the progression...