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June, July updates and thoughts

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

Hello,

After somebusy weeks I wanted to give you an update.

So what happened in the last months...
So May was the hardest month ever. One metastasis grew from 22mm to 51mm in 3 weeks time. The doctors were scared and told us so. Due to that they started Folfiri plus Avastin. The MRI 2 weeks after showed stable disease with some regression.
They also started a bunch of tests...
Slowly, the results are coming in. 17th August we have a talk with the oncologist. I am back home so I am joining my dad to ask a bunch of questions. I do hope that we get some good news. Before is a whole body CT and I am grateful for that. They are checking his liver but I want to be sure that lungs and over lymph nodes are free.

For now 6 months of chemo lies ahead of us. Sometimes it is more difficult for Papa to handle knowing there is no end but he responded good to the treatment and handles this chemo better than Folfox.
Recently he had by accident one wee break from chemo. There was a mess up with appintments. So in 4 weeks he only had one TACE but no chemo. That was really nice for him. Because of the TACE we have regular MRIs of the liver, so even though there was a longer break it did not show anything. 2 weeks after he had chemo again. Again there is a mess up with chemo and TACE... New doctors are handling the wards...
His oncologist left but according to Papa the new one is also good. Besides there was always a team of 3 oncologists discussing it besides the tumor board.

But yeah from scared doctors in May, we changed to satisfied doctors. The doctors gained control again.
Except for the high GGT, his liver markers are in the normal ranges. Soon there will be a CT.

We also checked for antibodies after the covid vaccine. He had both doses with no side effects and there is the information that the vaccine can fail in cancer patients. But Papa has antibodies.

I also read that apparently the growth is faster in immunocompromised patients. The aunt of my flatmate asked a collegue. According to the collegue it is the best treatment. She also said 'poor prognosis'. I hate these words obviously. So, I looked around for people with immunocompromised immune system and colon cancer like people with lupus or people with my dads KRAS mutation. I found people who beat it. One has the same KRAS like my dad, one of the worst ras mutations. Cancer free for some years already. Others have lupus and also had nothing for 2 years. With that said: what says that my dad is not one of these cases?

My dad said "when he is healthy again". Why not? The chemo does its work. He eats good. TACE is also doing its work. The intensity of the lesions is decreasing. So they are getting less active.
During the talk, I want to give the oncologist the study about liver transplants. I know he is an oncologist but he can provide this to the surgeon and they can discuss it during the tumor board. My dad is against it, I say it is my decision if I donate or not. But for now I hope that keytruda might be an option for the future. We did not hear anything about it, so I assume for now it does not. But then Papa had no long talks yet.

I am home again now. It was beautiful to see my parents again.
Yesterday I had some struggle... Both my parents dont have the best health. Papa cancer and my mom never takes care fir herself. Others are coming first even before her own health. Mama is 53 but due to the health issues my dad has. It is more important to support him than do a colonoscopy for example. Yes, Papa is important but my moms health is also important and due to the stress she just got another pill to lower her blood pressure. I still have 2 grandparents, both above 80, my grandpa died 2 years ago with 85. I am lucky to have healthy grandparents and I was just shocked that my own future children might not be so lucky to get to know their grandparents like I did. That was hard to take...

Btw next year at this time I am done with my studies. You can call me Dr Tueffel then

Tueffel

worriedson714's picture
worriedson714
Posts: 309
Joined: Dec 2019

So happy your dad's doctors are getting control again and that he is doing well on the treatments and you even found some hope in some cases were people beat cancer like your dads . Been wondering about you and your dad alot makes me happy to hear good news for you guys enjoy it future doctor :) .

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

Yes, scariest part of the journey was May at least for me. For my dad it was the second hardest. But yes during this time a lot of negative thoughts crossed my dads mind. 

Today is not a good day for my dad. His appetite has increased, so he is back to good after chemo on Monday, but he is very very tired. He was sleeping a lot and walking was exhausting. In the ecening he got a little dizzy. Probably his blood pressure dropped. A little afraid he has an infection but there is nothing else. 

Yes it was very encouraging to read that people are in remission even thoigh their immune system is as bad as my dads. I was always worried about the RAS one but one had 2x Folfiri with Avastin and the cancer got in remission. So if you read this you think: why not my dad?

I hope next week my dad is good again. The doctors called and wanted to fo TACE on Monday but dad will probably not do it. He needs this week to get back. It is the 5th chemo, he already had 5x TACE. We need to discuss a proper schedule for chemo and TACE, so the cancer suffers and Papa still has a break. The doctors told my dad weeks ago that they might increase the time to 3 weeks. Having these little things are good to hear after May...

I am a positive person and I dont know. I left my internship one day and I got hit and thought "we can win it". It just came  ;)

Tueffel

DanNH's picture
DanNH
Posts: 147
Joined: Feb 2021

Your update is full of hope and I am very happy for you. Your being with your parents will certainly help them and give them strength. Thank-you so much for posting. I was getting worried from not seeing you post for a while.

God Bless

Dan

 

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

I was very busy until 12th July. I had 5 weeks of internship and 2 weeks were basically 8h standing in the OR with unconfortable shoes. But it was one of these days when I left the hospital and it just hit me. The sun was shining and I just thought "we can make it". It felt like god put this thought in me because I did not really think about home. It just came and since then I feel hopeful. Papa has a good response to the treatment. Now the chemo is one of the hardest, he is tired, exhausted from walking 5m... But a lot that came back from doctors was like "Yes we are satisfied". This is a huge relief. 

I was busy with internships and then I am enjoying home, being with my parents again. CSN did not allow me to post as well... 

Yes, after my dad said that there is a talk with the oncologist, my parents were ok for me to join. My mom is fine because she knows I canhandle the stress, will still listen and ask questions. My dad is also okay with this cause the last big talk was good. It helped him a lot that we were speaking honestly that I was asking questions etc. Even though it was hard for him to hear that 5 year survival is 20%. But my dad only has the liver things and having satisfied doctors is always good. 

Tueffel

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

To call you Dr Tueffel! I love this update and yes your Dad can beat it, hope is a good thing!

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

Thank you! I will defibetely post pictures then cause we will wear proper robes etc .

The doctors did say in April that they never saw a case like my dad with a cure but then they never saw such a huge progression, never did Foundation one testing before etc. I read about ones case with a CEA of 2300. Due to the Foundation one she got qualified for keytruda and has been in remission now. Cancer is an unpredictable thing in medicine. I just think that doctors often see during treatment if it works and maybe they can be positively surprised? Even though I would really like to read an upsated MRI report. The last one was end of May... We had so many odds not in our favor, and I just hope that they are now in our favor. Good response to treatment is good, so lets build on that.

Thank you for your kind words 

DanNH's picture
DanNH
Posts: 147
Joined: Feb 2021

God bless your father and ma his treatments continue to heal him!

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

Thank you Dan! We all here just hope that the treatment will work flr us and our loved ones! 

sreekanth
Posts: 59
Joined: Apr 2017

Tueffel, I have been reading your posts and I can't but remark what an amazing son/daughter you are to your parents

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

Thank you! I do try my best even though I am sometimes in a different country but knowledge is power, they say. 

I am a daughter. Also have a sister. We both handle Papas disease differently, also have different supporters but I am sure we hope for the best!

Tueffel's picture
Tueffel
Posts: 300
Joined: Feb 2020

17th August is the talk with the oncologist. I am joining of course... Its usual and my dad also wants me to come. He said many times the few last weeks that he is very happy that I am here that he appreciates my support. There is some benefit to have a future doctor in your family to understand medicine and oncology.

Considering this date is so close, I am anxious a lot. Good thoughts, bad thoughts are running through my mind what the doctor might say. Beliebe me I would feel better if tge last MRI report I read was not from May. They said it looks good but you kind of hope for something right? You hope that cancer kills the chemo completely for a resection... I was hoping that keytruda might be an option too... Now I am biased. Papa has MS and there are reports with MS patients after immunotherapy, relapse of the MS, also death. I am sure there are others were it is not that case, they are rare, but they can happen. So yeah my mind is overworried, anxious etc. 

Tueffel

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