Olymphians

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rp1954
Posts: 1639
Joined: Mon Jun 13, 2011 1:13 am

Olymphians

Postby rp1954 » Wed Dec 07, 2022 6:33 pm

I'm starting a new post to avoid threadjacking Checklists for newly diagnosed Stage IV patients?.
nmorgen wrote:I am curious as to what the “ more comprehensive blood data” is.
I did go back and look at Starbuck30 profile and what her fiancé posted. I’m still not sure what actually happened or why. Obviously her cancer must have been very aggressive. I didn’t see where her grade was posted. Isn’t the grade suppose to give an idea at how aggressive the cancer is? Honestly what happened to her is very scary.

Starbuck is a belatedly recognizable Olymphian, apparently unknown until scanned ~6 weeks after her 12 Folfox cancer treatments for her symptoms, then going on a short fuse. As a nominal stage IIIC colon cancer patient at surgery, she had had no Avastin or extra chemistries either. The Olymphian threads have been mostly quiet for several years but patients with lymph nodes should consider what we have seen cumulatively since 2010.

One of the other graphic Olymphian overviews, was from Buckwirth, a rectal cancer patient diagnosed about the same day as my wife. Buckwirth tried to follow standard schedules of EBM, with some slippage. Again, untreated natural growth intervals and likely inflammation driven periods post treatment(s), showed rapid growth.

One of the things we saw with my wife's mets, dominated by an initial para aortic LN cluster remaining after first surgery, was that CEA took off with a rapid doubling time (14 - 30 days) when even one critical chemo component dropped too low. This happened several times over the years and was often harder to beat down, requiring chemical changes or surgery. My guiding principle was to pursue medical literature that suggested higher therapeutic index when personalized and combined in a continuous multicomponent formulation, for more cancer effect, less (negative) side effects and more side benefits - logically focused on safer versions of nutraceuticals (natural molecules and foods) and milder drugs.

One largely unanswered question that I asked right off the bat in 2010 was whether there was a (potential) crossover from conventional cyclical treatments (Folfox, Folfiri) to continuous chemo treatment (non standard). In retrospect now, standard oncology's greatest trials nearest to this question seems to have been with the basic ADAPT protocol, continuous daily chemo only for 1-2+ years intervals, sometimes several intervals, lower dose failures, no +++, no chronomodulation.

Because of our prior presurgical success with off label neoadjuvant immune treatment and off label chemistries (+ then ++ postsurgery, then +++ well into chemo, 1-3 years), and some important inferences vs conflicted statements, we chose to emphasize continuous treatment, what might be called UFT++ initially, growing out to UFT-LV +++ very analogous to what we are calling ADAPT+++, here with Xeloda.
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

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: Olymphians

Postby nmorgen » Wed Dec 07, 2022 10:37 pm

My husband has never been on chemo, but I wonder if it’s any different for immunotherapy. I’m 100% sure, but I think he will have to stay on this treatment for at least 2 years unless it doesn’t work or it stops working.

Honestly I feel a little lost right now.

Thank you for the information.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

stu
Posts: 1601
Joined: Sat Aug 17, 2013 5:46 pm

Re: Olymphians

Postby stu » Thu Dec 08, 2022 3:25 am

I was around way back when Starbucks was active on the board .
The other thing to remember , everything was very different back then . Even the scans where only able to detect tumours at a certain size . Treatments like immunotherapy were not around or approved like they are now .
A lot of patients did not have proactive oncologist either .
She was a wonderful person but at the end of the day your husband is a statistic of one . It only needs to work for him to change everything . It’s easy to get knocked by other peoples stories to begin with . You almost need to develop a form of tunnel vision .
That certainly helped my family !
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 .

rp1954
Posts: 1639
Joined: Mon Jun 13, 2011 1:13 am

Re: Olymphians

Postby rp1954 » Thu Dec 08, 2022 4:57 pm

nmorgen wrote:My husband has never been on chemo, but I wonder if it’s any different for immunotherapy. I’m 100% sure, but I think he will have to stay on this treatment for at least 2 years unless it doesn’t work or it stops


The Olymphian story was in response to Jacques' request for comments on his "Checklist" construction and personalization of treatment in advanced CRC to address patients. I underscore the missed, delayed identification, or understaged, and for a segment of readers with mets in the lymph nodes we don't see posting much right now.

MSI-H treatment is a special situation and opportunity, now. I would be very hopeful that the recommended immunotherapy could be a miracle treatment for your husband's MSI-H tumors. My comment for you is that better follow up can catch residual problems while they are solvable. Also some nutraceuticals may interact with that immunotherapy, so I would be careful in that area for specialized advice.
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

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: Olymphians

Postby nmorgen » Mon Dec 19, 2022 9:07 pm

Thank you for creating this thread and for everyone who gave some insight. I have been looking for anything additional that might help, but it does seem that there aren’t that many recommendations for immunotherapy. I have read that adding prebiotics is good because gut bacteria might affect immunotherapy. Some things I have read say add probiotics others say don’t add probiotics. I’m assuming natural probiotics like yogurt would be okay.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9


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