Disease progression on Folgiri Avastin

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Tueffel
Posts: 13
Joined: Sat May 15, 2021 12:53 pm

Disease progression on Folgiri Avastin

Postby Tueffel » Tue Aug 17, 2021 7:35 am

Hello,

Since May my dad got 5x Folfiri with Avastin and 5x TACE. Unfortunately, it was not helping. The disease is progressing and there might be a 3.6mm big lung metastasis. The liver metastasis got bigger but not more. Instead of Avastin, they will try another antibody now. Other possibility is Lonsurf but thats it then. It is said cause on Folfox my dad had a partial response after only 4 chemos. Now its progressing.
We live in Germany and I will contact Berlin and Hamburg now for 2nd opinion.
I also found that MSK has international patients. So maybe I will contact them as well for HAI pump. I dont know if it is possible with lung mets or not, or how many. I just want to try everything. Next year med school is over and I will regret it if I dont fight.
Tueffel
Papa *64
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, 5x Folfiri + bev
08/21 CT, still growth, maybe lung, ileus surgery and peritoneal mets, 2nd opinion pending

User avatar
O Stoma Mia
Posts: 1654
Joined: Sat Jun 22, 2013 6:29 am

Re: Disease progression on Folfiri Avastin

Postby O Stoma Mia » Tue Aug 17, 2021 8:54 am

Tueffel wrote:...
I also found that MSK has international patients. So maybe I will contact them as well for HAI pump...

Here is the MSKCC web page for German international patients:

https://www.mskcc.org/de/experience/become-patient/international-patients

Tueffel
Posts: 13
Joined: Sat May 15, 2021 12:53 pm

Re: Disease progression on Folfiri Avastin

Postby Tueffel » Tue Aug 17, 2021 9:32 am

O Stoma Mia wrote:
Tueffel wrote:...
I also found that MSK has international patients. So maybe I will contact them as well for HAI pump...

Here is the MSKCC web page for German international patients:

https://www.mskcc.org/de/experience/become-patient/international-patients


Thanks! I already found it before but I will try it. Otherwise I will regret one day that I did not do everything to save my dad
Papa *64
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, 5x Folfiri + bev
08/21 CT, still growth, maybe lung, ileus surgery and peritoneal mets, 2nd opinion pending

boxhill
Posts: 737
Joined: Fri Apr 06, 2018 11:40 am

Re: Disease progression on Folgiri Avastin

Postby boxhill » Fri Aug 20, 2021 8:52 am

I'm sorry that things are not going well for your father now. Best wishes to you both.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

rp1954
Posts: 1574
Joined: Mon Jun 13, 2011 1:13 am

swinging for the fence

Postby rp1954 » Sun Aug 22, 2021 6:20 pm

From my point of view, you need four things to attempt a thorough salvage with a multimodal attack.

1. A full time chronomodulated ADAPT+++ formula to limit spread, stem cell circulation and kill smaller sites;
........intravenous vitamin C (IVC) for the Kras cells.
......"Full time chemo" for us was IVC and daily chronomodulated immunochemo within one day of a different surgery, a different 5FU.
2. Supernutritional support, I list it as an additional step here to be explicit.
........For me, normally it is part of the "+++" and IVC mentioned above.
3. Rolle type laser surgery(s) in reasonably close sequence to
4. Liver surgery(s). The full time IVC/immunochemo is to limit the metastatic spread they helplessly wring their hands while telling you the situation is inoperable and surgery is futile.

As you pull the big nasty stuff out, the new cancer cell circulation may drop and the remaining small tumors may be less mutated and/or less environmentally stimulated. We were able to get a like new response with old chemo once the big, bad stuff was gone.
From early on, my answer to chemo resistant tumors was cold steel.

The surgeons who do the multimodal stuff are often at the top of their national pyramids. The problem is "simply" to get cooperation with your game plan. One of the other big problems in Europe is that they have such teeny weeny vitamins and supplements at astronomical prices under pharmaceutical controls.

I don't see the real problems as technical but rather logistical and political.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Tueffel
Posts: 13
Joined: Sat May 15, 2021 12:53 pm

Re: swinging for the fence

Postby Tueffel » Tue Aug 24, 2021 11:27 am

rp1954 wrote:From my point of view, you need four things to attempt a thorough salvage with a multimodal attack.

1. A full time chronomodulated ADAPT+++ formula to limit spread, stem cell circulation and kill smaller sites;
........intravenous vitamin C (IVC) for the Kras cells.
......"Full time chemo" for us was IVC and daily chronomodulated immunochemo within one day of a different surgery, a different 5FU.
2. Supernutritional support, I list it as an additional step here to be explicit.
........For me, normally it is part of the "+++" and IVC mentioned above.
3. Rolle type laser surgery(s) in reasonably close sequence to
4. Liver surgery(s). The full time IVC/immunochemo is to limit the metastatic spread they helplessly wring their hands while telling you the situation is inoperable and surgery is futile.

As you pull the big nasty stuff out, the new cancer cell circulation may drop and the remaining small tumors may be less mutated and/or less environmentally stimulated. We were able to get a like new response with old chemo once the big, bad stuff was gone.
From early on, my answer to chemo resistant tumors was cold steel.

The surgeons who do the multimodal stuff are often at the top of their national pyramids. The problem is "simply" to get cooperation with your game plan. One of the other big problems in Europe is that they have such teeny weeny vitamins and supplements at astronomical prices under pharmaceutical controls.

I don't see the real problems as technical but rather logistical and political.


Thank you! I am sorry, I consider my English to be good but I dont understand half of your post.. Never heard chronomodulated before.

For now Papa is in the hospital due to ileus. We dont know why, there is a suspicion that it might me a metastasis. We will see.
Please hope for the best
Papa *64
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, 5x Folfiri + bev
08/21 CT, still growth, maybe lung, ileus surgery and peritoneal mets, 2nd opinion pending

User avatar
O Stoma Mia
Posts: 1654
Joined: Sat Jun 22, 2013 6:29 am

Re: swinging for the fence

Postby O Stoma Mia » Tue Aug 24, 2021 2:40 pm

Tueffel wrote:rp1954 -
Thank you! I am sorry, I consider my English to be good but I dont understand half of your post.. Never heard chronomodulated before.

I know it is sometimes difficult to read rp1954's posts with all of the specialized terms and unfamiliar acronyms that he uses, but it is well worth your while to persevere and try to understand what he is saying. The reason has been summarized succinctly by beachsunrise:

    beach sunrise wrote:.... Also, research rp1954 posts. He has posted valuable info you won't find anywhere else.
Yes, this is one of the hallmarks of rp1954's contributions here. He typically brings a well-needed new frame of reference for discussing diagnostic and treatment decisions. He is willing to discuss options that are outside the typical "standard-of-care" framework.

Many members here have benefited from his evidence-based approach to medical decision making, especially those members who are running out of options in the typical "standard-of-care" context and are looking for something different to try.

If you want to see if he has commented on any particular theme you are interested in, you can search his past posts here by keyword (as long as the keyword contains more than three characters). One approach to doing this is listed here:

Some of the keywords you could search for in his archive, one at a time, are : IMMUNO* KRAS G12V LASER AUTOIMMUNE LYMPH LUNG LIVER FOLFIRI AVASTIN FOLFOX ADAPT* LONSURF METRONOMIC etc

You cannot search for keywords like IVC MRI PET HAI MSS, etc., because they are too short.

rp1954
Posts: 1574
Joined: Mon Jun 13, 2011 1:13 am

Re: swinging for the fence

Postby rp1954 » Tue Aug 24, 2021 3:56 pm

Tueffel wrote: Thank you! I am sorry, I consider my English to be good but I dont understand half of your post.. Never heard chronomodulated before.

For Xeloda two major changes in the Xeloda part of the chemo schedule:
1. Instead of two equal doses of Xeloda 12 about hours apart, 2-3 unequal doses. possibly larger, timed for maximum cancer impact but with less side effect is the aim. One dose is the main punch, the other(s) to carry the cells quiescently for the remaining 24 cycle

2. Also our version of chronomodulated chemo was daily, aimed at immunochemo.

Immunochemo - chemo aimed at immune response, partly "self vaccinating" from killed cancer cells
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

User avatar
beach sunrise
Posts: 517
Joined: Thu Mar 05, 2020 7:14 pm

Re: Disease progression on Folgiri Avastin

Postby beach sunrise » Tue Aug 24, 2021 9:04 pm

Chronomodulated made so much more sense for me so it's the protocol I follow. I take smaller dose of xeloda in the am then larger dose at midnight every single day, no days off. I have been on this protocol for over a year.
Cancer is constantly replicating so it made sense to me to hammer it every day with no breaks. I have no toxicity so far, no HF thing, no liver trouble, not even a messed up stomach.
I also take high potency supplements for immune response, IVC twice a week for kRAS mutation and IVM =ADAPT+++. All to keep synergizing the xeloda.
These things are to stop metastatic spread as to not miss the surgery boat if I need surgery down the road.
rp1954 is way ahead of modern medicine in thinking outside the box for personalized cancer treatment. I model my protocol based on ME (my body, my cancer). Bloodwork tells me 90% probably of everything I need to know and I do bloodwork every 7 to 14 days depending on if I switch something up or add something in.
Fighting cancer is very hard work and one where you will not find all your answers in one place.
I hope you research more and develop a good personalized plan for your dad. It can be done.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Cured
Posts: 574
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Disease progression on Folgiri Avastin

Postby Cured » Thu Aug 26, 2021 2:24 pm

Beach Sunrise, Nice to hear your protocol.
Many of us here understand that we are all different, and that there is no "one size fits all" treatment that works. So we aren't Doctors proscribing treatment.

Since I turned stage IV three years ago, I had to comprehend that there is nothing the Oncologists can assure to us who have metastatic colon cancer.
Last year I was often infusing Folfiri with MVASI (biosimilar Avastin). Maybe it had some impact, but it didn't wipeout the tumors in my lungs. At the beginning of 2021 I stopped all chemo so that my blood counts could become normal, so my innate Immune System can do it's job. My Red and White counts promptly got back to good. My target was to be able to be with people at my son's wedding in July; which I did. Most of the time I isolate at home and I wear an N-95 mask with a filter when I am out.
I get sunshine most days; plenty of sleep and take a walk. Plus a full complement of vitamins and supplements, while fasting and staying in a Ketogenic state.

I FEEL GOOD. On Chemo you can feel weak and mouth sores aren't fun.
A strong immune system fights viruses and cancers. Old school Chemo can weaken us to where our bodies cannot fight cancer as they were designed to.

I must testify to the power of God! By prayer, Fasting and taking Holy Communion I am alive and stable. In 2020 the churches were closed, and the cancer started to grow in my lungs. In 2021 I have been able to participate in church and partake in the Body and Blood of Christ each week. CT scans showed that during this time the tumors in my lungs did NOT grow. GLORY TO GOD!

The Cancer Treatment Industry doesn't offer solutions for someone with the typed cancer indicators which I have.
I don't expect them to acknowledge the direct power of Christ.
I do wish that they would acknowledge the power of fasting and starving cancer by limiting blood glucose. At least they could take notes on how patients do when they follow certain fasting protocols. My Oncologist calls what we are doing "watch and wait", since I am not undergoing proscribed treatment.

I hope that you all are able to feel as good as I do.

13 years into my cancer journey and metastatic, I live on.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3,2.3.4.8,8.4,9.1,10
12 rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumor gth =Folfiri

User avatar
beach sunrise
Posts: 517
Joined: Thu Mar 05, 2020 7:14 pm

Re: Disease progression on Folgiri Avastin

Postby beach sunrise » Thu Aug 26, 2021 4:39 pm

Thank you, Cured for telling about your cancer fight. You are tough for sure.
It is an inspiration to all to know other options exist to help your body and chemo work better.
I hope I will be here years from now still telling about my fight like alot of you are.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Tueffel
Posts: 13
Joined: Sat May 15, 2021 12:53 pm

Re: Disease progression on Folgiri Avastin

Postby Tueffel » Mon Aug 30, 2021 3:29 am

Thank you guys for all your input.

Unfortunately, 2 days after posting my opening post my Papa was admitted to the hospital. He had emergency surgery due to an ileus. The surgery went well. They took a lot of samples to check and unfortunately there is more cancer than the CT showed. I dont know if it is the peritoneum or the GI tract but there outside of the liver metastasis. On Wednesday, Papa will leave the hospital. The moment I have the recent report, letters will go out to university cancer centers. We have been at a certified colon cancer center but we need the bigger guns now.
Take care!
Papa *64
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, 5x Folfiri + bev
08/21 CT, still growth, maybe lung, ileus surgery and peritoneal mets, 2nd opinion pending


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