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Recent doctors letter

Tueffel's picture
Tueffel
Posts: 262
Joined: Feb 2020

Hello,

 

I asked my family to send me the doctors letter they just got. It was quite long but informative. I am a 5th year med student and feel not prepared to become a doctor after reading this...

First of all the dates and info was really a mess because they talked about the 1st TACE at the 29th April but then how the procedure of the 2nd TACE went.

First: my dad has FOLFIRI plus Avastin now. He does feel good. Good sleep, no pain, nothing. The chemo made him tired but it is not comparable to FOLFOX.

After the first TACE they did an MRI to check for bleeding. The MRI was taken the 30 April. They compared the lesions to the MRI done the 14th April. I was shocked to read it. There are 16 days in between and it was basically a mm a day of growth. The small ones which were 2.3mm was then 7.3mm. But one got from 22 to 40mm during this time. That was also the reason this lesion got the 2nd TACE. The MRI after the 2nd TACE is still not there. My dad got the message that the first TACE helped. Still reading that was scary. My dad has btw 6 mets in whole... and let me say a strange looking borderline lymphnode.

The lab fromthe 5th May was also terrible to read. A lot of markers were suddenly high or even higher. The next day 6th May it did look better for whatever reason. Apparently irinotecan is a lot nicer to the liver so I hope that the markers go down. Our GP did run blood work a few days later and it was encouraging. In a little over a week he will have the next chemo plus maybe TACE. Ofcourse they will do a MRI and I am quite grateful for that. I think these lesions need to be under surveillance, regularly spied on it.

They will send the previous biopsy to a specialists cause they are getting time now with the chemo hopefully to review everything. I hope that they will get at some point a biopsy of the tumor. I think only then you can do all the tests because I want this stupid thing to be examined cause I think the tumor acts so differently from last year that I think it is better to compare it.

Papa also gets Foundation One testing, so more testing, more info and maybe treatments, either available or for trials. They also test for NRTK...

On Monday I will get a call from the doctor so I hope I will get some info and maybe an info how the first TACE went or his recent blood work. 

The doctor is surprised that he feels nothing. My dad actually wanted to do some work but now my mom takes care for him. He even gains weight, eats good, has appetite and good sleep. We have no cows anymore so both deserve the retirement but it would still be nice if they have a long retirement.

My prof states that it does not look nice but there is not much to do. So yeah in around 10 days is the next MRI that will show results from the chemo started 7th May. Cross your fingers for me that fast growing tumors shrink as much. 

PS I dont really want to know how much they did grow in between the TACE...

Tueffel

 

Trubrit's picture
Trubrit
Posts: 5459
Joined: Jan 2013

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

 

Tueffel's picture
Tueffel
Posts: 262
Joined: Feb 2020

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's picture
worriedson714
Posts: 278
Joined: Dec 2019

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 . 

Tueffel's picture
Tueffel
Posts: 262
Joined: Feb 2020

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. 

Real Tar Heel
Posts: 214
Joined: Nov 2019

There could be some external factor other than the type of tumor that is causing rapid growth. How is his iron? Blood glucose?

Tueffel's picture
Tueffel
Posts: 262
Joined: Feb 2020

Maybe there are some factors but tbh I dont know them. It would be nice to know to regulate or benefit him. The measurement of blood glucose I have is HbA1c: it was low normal, now it is a little bit below normal. I just did a quick read and it seems to be good if it is not increased. Fasting glucose is also normal.

Iron should be good. Neither hemoglobin nor MCV are lower than normal and in anemia associated with iron deficiency they would be decreased. 

They measured albimun in serum but that is also in norm. I wrote now on colon talk Papas story, maybe someone heard of a similar case. There was one who said that her/his mom also has fast growing tumors (dont know how fast) but it reacted good to chemo which is my hope. 

Real Tar Heel
Posts: 214
Joined: Nov 2019

Yes there are a few studies from China regarding glucose regulation and that Metformin delayed recurrences in some patients but I don't recall the mechanism. Another study showed recurrences occurring in patients with excess iron. My understanding what we cancer patients usually have bone marrow related anemia not iron deficiency and maybe that's where we mess up by taking excess iron.

Tueffel's picture
Tueffel
Posts: 262
Joined: Feb 2020

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
Posts: 214
Joined: Nov 2019

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.

Tueffel's picture
Tueffel
Posts: 262
Joined: Feb 2020

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's picture
SnapDragon2
Posts: 531
Joined: Nov 2019
Tueffel's picture
Tueffel
Posts: 262
Joined: Feb 2020

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...

SnapDragon2's picture
SnapDragon2
Posts: 531
Joined: Nov 2019

To me, I get out of it to control the inflammation and glucose to help stop progression.

SnapDragon2's picture
SnapDragon2
Posts: 531
Joined: Nov 2019

Just had appt with my ND.  For the CocoaVia, the one for memory plus has more phenols.  He recommends based on kRAS study 1 cap every 2-3hrs to total 4-5 caps per day.  Reason is in the study cocoavia has a short cancer killing life of 2-3hrs.

I just have the reg cocoavia at the moment so I will upgrade to the cocoavia memory plus when I run out.

Tueffel's picture
Tueffel
Posts: 262
Joined: Feb 2020

Thanks for the info!

We told our GP about TCM as additional support. The GP was okay, unfortunately the doctor who is an expert on it, is sick atm. But I know they will get back at us.

I dont think I can get my Papa to eat cocoa tbh. He doesnt even eat chovolate or dark chocolate.

His blood sugar is normal or low. His CRP was increased the last time but that could be due to the cancer and treatment

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