Papa stage 4 recurrence, daily mm growth

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Tueffel
Posts: 15
Joined: Sat May 15, 2021 12:53 pm

Papa stage 4 recurrence, daily mm growth

Postby Tueffel » Sat May 15, 2021 1:12 pm

Hello,
This is my first post so it will be really long to give an insight.
Jan 2020 my dad got diagnosed with stage 4 colon cancer (adenocarcinoma) with liver mets. He got a stoma, 4 x Folfox, he had a liver surgery then a colon surgery and then from August 2020 8 more chemos with 60% oxaliplatin until Nov. Besides the cancer, my dad has MS and got 2018 and 2019 Lemtrada/alemtuzumab to sto the MS.
2017/18 he had a negative colonoscopy...
The whole year 2020 the treatment with optimal. Nothing to worry.
They did a PET because there was something that concerned the doctors. There was a liver met. In Feb 2021 he had his next liver surgery.

Now comes the bad thing. 14th April he had MRI that showed several liver mets (6). They decided to treat him with TACE. After the TACE they did a MRI to check if everything is fine. The mets doubled in their size. One grew 18mm. It was the 30th April so only 16 days.
Also the doctors were negatively surprised...
A week later he got 2nd TACE and folfiri with avastin. My Papa in general feels good.
The doctors are now rechecking biopsies etc. They will test for NRTK and do foundation one testing.

I am writing to maybe get to know someone who had that fast growing cancer as well.

My Papa is 57, adenocarcinoma stage 4 with liver mets,KRAS G12V, BRAF WT, HER 2 neg, MSS, positive family history.
No medication, chronic disease MS.
Cancer was G2, PN1, rest okay.
We are getting treatment in Germany and I hope I did not forget something.

Maybe someone scrumbled about something similar or has experience. I would be grateful.

Tueffel
Papa
Has MS, 18/19 w Alemtuzumab
01/20 dx adeno
pT3, pN1c (0/13; deposits), pM1 liver
Pn1, R0, G2
KRAS G12V
Treated: Germany
4x folfox
05-06/20 liver + colon surgery
08-11/2020 folfox, 60% oxaliplatin
02/21 2nd liver surgery
04/21 recurrence
2 weeks: 50% growth
Since 05/21 5x TACE, 7x Folfiri + bev
08/21 still growth, ileus surgery and peritoneal mets,
10/21 Lonsurf Cyramza, failed
Papa died 26th November 2021

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Papa stage 4 recurrence, daily mm growth

Postby stu » Sun May 16, 2021 3:00 am

Hi ,
My mum’s liver mets were always fast growing . She had an immediate recurrence where four 1cm lesions were found on her post op scan and a recurrence on a resection margin . The Microdisease was revealing itself !
She ended up with an extensive liver resection removing 73% of her liver . She was quite slow to recover initially but it also removed all the microdisease and her liver has been clear for 10 years despite a pretty extensive spread at her initial diagnosis.

Hope your dad gets a good solution . My mum’s initial tumours were around 5 cm but chemo was very effective. She did not use anything else out with surgery / chemo .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Tueffel
Posts: 15
Joined: Sat May 15, 2021 12:53 pm

Re: Papa stage 4 recurrence, daily mm growth

Postby Tueffel » Sun May 16, 2021 6:02 am

Hello stu,
Thank you for your answer! It was quite a challenge to get to know how the cancer is now. My Papa already had 2 liver resection but now there are 6 of them in each liver segment so I do not know if the liver resection like your mom had will ever be possible. I am hoping that RFA or MWA might be possible at some point...
How many metastases did your mom had and were they everywhere?

It is good to hear that chemo might work good then. We wont get to know how chemo worked until a MRI in a week and a half. Lets hope for something good then
Tueffel
Papa
Has MS, 18/19 w Alemtuzumab
01/20 dx adeno
pT3, pN1c (0/13; deposits), pM1 liver
Pn1, R0, G2
KRAS G12V
Treated: Germany
4x folfox
05-06/20 liver + colon surgery
08-11/2020 folfox, 60% oxaliplatin
02/21 2nd liver surgery
04/21 recurrence
2 weeks: 50% growth
Since 05/21 5x TACE, 7x Folfiri + bev
08/21 still growth, ileus surgery and peritoneal mets,
10/21 Lonsurf Cyramza, failed
Papa died 26th November 2021

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Papa stage 4 recurrence, daily mm growth

Postby stu » Sun May 16, 2021 10:55 am

Hi ,
The first year she had five mets . Segments 1 to 3 were clear but the rest had evidence of disease .
She initially had four wedge resections but to be honest I think other disease was in there also but not big enough to detect so she immediately recurred . They did say they would have to be creative around certain areas as they resected to try and leave a small but functioning piece of liver .
In total she had ten visible mets . To be honest after resection the surgeon just said we found what we expected “ cancer” and did not elaborate on how much by that time . He was being kind and to be honest by that point I don’t think anyone had a appetite to press him on it .
The chemo on its own was fantastic and shrunk it all , most of the scan so I think radio frequency ablation would have become challenging in that it was no longer visible !
However my mum’s oncologist said the research coming through on it is giving surgeons a good run for their money !
I hope your dad gets a good response .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Tueffel
Posts: 15
Joined: Sat May 15, 2021 12:53 pm

Re: Papa stage 4 recurrence, daily mm growth

Postby Tueffel » Mon May 17, 2021 4:32 am

stu wrote:Hi ,
The first year she had five mets . Segments 1 to 3 were clear but the rest had evidence of disease .
She initially had four wedge resections but to be honest I think other disease was in there also but not big enough to detect so she immediately recurred . They did say they would have to be creative around certain areas as they resected to try and leave a small but functioning piece of liver .
In total she had ten visible mets . To be honest after resection the surgeon just said we found what we expected “ cancer” and did not elaborate on how much by that time . He was being kind and to be honest by that point I don’t think anyone had a appetite to press him on it .
The chemo on its own was fantastic and shrunk it all , most of the scan so I think radio frequency ablation would have become challenging in that it was no longer visible !
However my mum’s oncologist said the research coming through on it is giving surgeons a good run for their money !
I hope your dad gets a good response .
Take care ,
Stu


Hello stu,
My dad got segment 4 removed. I checked now and only 2 segments are now without evidence of cancer. The rest either got removed or has a met... So I dont think anyone wants to operate on my dad for now. Maybe if some really disappear, they might want to remove the bigger ones.
For now my dad had 2 times TACE but one lymph node is borderline and the info I got is from 30th April. I feel so outdated now... The last MRI was before the start of chemo so next week we know if the growth stopped or not.

Do you mean she had 10 in total (5 when diagnosed, 5 recurrence?). Got a little confused. Did the doctors every try to figure out why the cancer grew so fast? Our doctors are rechecking everything now. When was the first Post op scan? Sorry for all the questions...

Thank you for your words! You always read about colon cancer how slow it is growing and then I see my dads case which confuses a lot of doctors. You get even more afraid when you see that the mets grew one mm a day. I feel calmer to get to know that other people went through the same even with a good outcome. Maybe at some point my dad can be this case too. Thank you!
Tueffel
Papa
Has MS, 18/19 w Alemtuzumab
01/20 dx adeno
pT3, pN1c (0/13; deposits), pM1 liver
Pn1, R0, G2
KRAS G12V
Treated: Germany
4x folfox
05-06/20 liver + colon surgery
08-11/2020 folfox, 60% oxaliplatin
02/21 2nd liver surgery
04/21 recurrence
2 weeks: 50% growth
Since 05/21 5x TACE, 7x Folfiri + bev
08/21 still growth, ileus surgery and peritoneal mets,
10/21 Lonsurf Cyramza, failed
Papa died 26th November 2021

Tueffel
Posts: 15
Joined: Sat May 15, 2021 12:53 pm

Re: Papa stage 4 recurrence, daily mm growth

Postby Tueffel » Sun May 30, 2021 12:32 pm

We got some results. The disease is stable. We will see how it will be next time with the 3rd chemo. But yeah a little success!
Papa
Has MS, 18/19 w Alemtuzumab
01/20 dx adeno
pT3, pN1c (0/13; deposits), pM1 liver
Pn1, R0, G2
KRAS G12V
Treated: Germany
4x folfox
05-06/20 liver + colon surgery
08-11/2020 folfox, 60% oxaliplatin
02/21 2nd liver surgery
04/21 recurrence
2 weeks: 50% growth
Since 05/21 5x TACE, 7x Folfiri + bev
08/21 still growth, ileus surgery and peritoneal mets,
10/21 Lonsurf Cyramza, failed
Papa died 26th November 2021

Nor Cal
Posts: 89
Joined: Sun Dec 06, 2020 8:18 pm

Re: Papa stage 4 recurrence, daily mm growth

Postby Nor Cal » Mon May 31, 2021 12:04 pm

16 days after TACE seems quite soon for a scan. My doc wanted 30 days after the 2nd session to evaluate things.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 55 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

Tueffel
Posts: 15
Joined: Sat May 15, 2021 12:53 pm

Re: Papa stage 4 recurrence, daily mm growth

Postby Tueffel » Mon May 31, 2021 12:08 pm

Nor Cal wrote:16 days after TACE seems quite soon for a scan. My doc wanted 30 days after the 2nd session to evaluate things.

Thank you for your answer!
The doctors wanted to check if they at least stopped the growth and if there is something outside of the liver. The MRI was to check if it got worse again or not. They are just careful cause one did grow 1mm a day and the others doubled their volume too.
Papa
Has MS, 18/19 w Alemtuzumab
01/20 dx adeno
pT3, pN1c (0/13; deposits), pM1 liver
Pn1, R0, G2
KRAS G12V
Treated: Germany
4x folfox
05-06/20 liver + colon surgery
08-11/2020 folfox, 60% oxaliplatin
02/21 2nd liver surgery
04/21 recurrence
2 weeks: 50% growth
Since 05/21 5x TACE, 7x Folfiri + bev
08/21 still growth, ileus surgery and peritoneal mets,
10/21 Lonsurf Cyramza, failed
Papa died 26th November 2021


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