Mixed bag kinda day: progression, genomic results, and trial

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Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Mixed bag kinda day: progression, genomic results, and trial

Postby Cmac1275 » Mon Nov 26, 2018 10:06 pm

Hello everyone,

Wanted to post about my day at Duke Cancer Center today. I guess for a bit of encouragement and support. But also, in case any of this information is helpful to others.

Last Wednesday, 11/21/18, I had a CT scan after 4 rounds of FOLFOX + Avastin. Note that I had 6 rounds of the same between 3/18 and 5/18 before I had my liver resection. Scan shows there are two new liver lesions. And there is slight growth on two existing liver lesions. In addition, CT scan showed an inflamed lymph node next to my aorta. However, the mild tissue around the peritoneal lining that showed up in the PET scan back in September is not visible on this CT scan.

In summary, my onc suggests we’ve reach the end of the line with FOLFOX. She explained that this is not out of the ordinary. And since I had a dramatically good response to FOLFOX initially, she expects positive results moving to FOLFIRI. As such, I am now registered to start a Phase II clinical trial beginning December 10th 2018. I will either be on the control group receiving FOLFIRI + Avastin. Or, I’ll be getting FOLFIRI + ABT-165, a new drug from AbbVie that is being tested for better efficacy than Avastin.

I also received my Foundation One CDx results today. The genomic findings are as follows:
KRAS G13D
NRAS wildtype

Other alterations and biomarkers observed included:
BRCA1 T276fs*14
CARD11 R179W
RBM10 R793*
SMAD4 R361H
TP53 G266R

Duke has been working with Memorial Sloan Kettering and Dr. Kemeny to begin HAI pump treatment here in North Carolina. But right now, because of the lymph node inflammation (which is believed to be disease), I don’t qualify for it. Hoping that after a few rounds of FOLFIRI this changes.

Finally, I’ve been taking supplements as I work with a naturopathic doctor. It’s only been two months. So, hard to say if it’s working or not. But, for what it’s worth, I’m taking Curcumin, Fermented COD fish oil, Sulforaphane Glucosinolate, Modified Pectin Citrus, Vitamin D, Conium Maculatum, and loads of green tea.

I’ll update my signature shortly. But appreciate any input / feedback from anyone with similar circumstances. Good news is that for now, I feel amazingly good except for 2-3 days during chemo week. So, on I go living my life and trying to turn any possible stone that will keep me on this earth with my friends and family for as long as possible.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby stu » Tue Nov 27, 2018 6:33 pm

Hi ,
Sorry you have a rough day but you are a great responder to chemo and certainly in my mum’s case it took two years for most of disease to make itself know and be controlled .
Great that you tolerate chemo so well .
Hope the next cycle sorts it out for you .
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 .

cartech78
Posts: 45
Joined: Thu Oct 25, 2018 6:22 pm

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby cartech78 » Tue Nov 27, 2018 6:46 pm

Sorry to hear about these results. I posted to you awhile back about that Abbvie trial, My wife works there. I was at MSK when the Duke people were shadowing Dr.Kemeny earlier in the Month. What a small world. Im currently doing 3 rounds of FolFox here in Chicago and going back to MSK on Dec18th to see what surgery options i may have available if any. I also started my own little supplement regimen sorta under the table. Im taking 2g a day of Curcumin, 3g of Micronized Reservatrol, baby aspirin and considering another. Anyways I just wanted to wish you some luck with your new plan and I hope they get things under control.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.

Punky44
Posts: 130
Joined: Mon Oct 01, 2018 4:29 pm

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby Punky44 » Wed Nov 28, 2018 1:39 am

Praying for you that your new plan brings you as much success as the first time!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby Cmac1275 » Wed Nov 28, 2018 10:51 am

cartech78 wrote:Sorry to hear about these results. I posted to you awhile back about that Abbvie trial, My wife works there. I was at MSK when the Duke people were shadowing Dr.Kemeny earlier in the Month. What a small world. Im currently doing 3 rounds of FolFox here in Chicago and going back to MSK on Dec18th to see what surgery options i may have available if any. I also started my own little supplement regimen sorta under the table. Im taking 2g a day of Curcumin, 3g of Micronized Reservatrol, baby aspirin and considering another. Anyways I just wanted to wish you some luck with your new plan and I hope they get things under control.


Thank you, Cartech. Small world indeed. My oncologist was telling me how incredibly detailed and thorough Dr. Kemeny is. When my onc and I were discussing the possibility of Duke offering HAI, she cautioned me about the success rates at other hospitals that perform HAI implants. She said, Dr. Kemeney's results are basically unmatched. Having spent time with her in NYC, my onc understands why. That woman pioneered this treatment. Made a career out of it, actually. My onc told me she literally has binders upon binders of data, notes and algorithms to treat different situations. I'm glad a couple of MSK surgeons will be working with the oncology team here at Duke. Their experience will be key once they start performing the procedure.

I admit that I'm also considering using CBD/THC oils as well. It's hard to ignore the data suggesting real clinical benefit for cancer patients. But, I'm hopeful that this next round of chemo will resolve the lymph node inflammation so I can become eligible for HAI.

Side not on the supplements. I see a naturapathic doctor myself. She's cautioned me on taking Reservatrol during chemo. Data suggests it may interfere with the chemo treatments, apparently. Something to keep in mind in case you want to dig into.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby Cmac1275 » Wed Nov 28, 2018 10:54 am

stu wrote:Hi ,
Sorry you have a rough day but you are a great responder to chemo and certainly in my mum’s case it took two years for most of disease to make itself know and be controlled .
Great that you tolerate chemo so well .
Hope the next cycle sorts it out for you .
Take care,
Stu


Thank you, Stu. I know your mom was in a similar boat where she had recurrence shortly after her resection. Glad she managed to sort that out in the end. It's also encouraging — in a weird way — to know that it took her a couple of years to get over the hump. I try to remind myself I'm on a lifelong marathon and need to manage life with cancer as my new normal. Rather than panicking every time I feel something off or I get less than positive news from my onc.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby Cmac1275 » Wed Nov 28, 2018 10:54 am

Punky44 wrote:Praying for you that your new plan brings you as much success as the first time!


Thank you!
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby stu » Wed Nov 28, 2018 1:18 pm

Hi ,
Strange as it is the first year the rest of my family were really positive and if I am honest I really struggled with it . However the second year when I knew she responded well to treatment it was me that really believe this was doable .
It became logical to me that the cells were all part of the original spread and whilst some people are fortunate enough to deal with it in one procedure , it was also a possibility that there would be a timeframe for them to manifest themselves and then be dealt with . Being chemo responsive was the game changer in my mind . However my mum was initially really disappointed as you can imagine and it did take a couple of weeks to find her feet and focus back into treatment . She is made of strong stuff .
With time I think we did learn to deal with it as a chronic condition but they are really annoying and anxiety provoking too . So be kind to yourself . It takes a lot of managing and adjusting but I think your oncologist has been very wise . They often have a good grasp of who does well with treatment .
Two steps to NED !
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 .

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby Cmac1275 » Wed Nov 28, 2018 3:54 pm

Thank you Stu. This is helpful. Particularly as I sit here with a very sour stomach. Achy and bloated. Good thing CT scans did not show any spread.

But of course, now I wonder if I have a bowel blockage due to a post-surgery adhesion. Or, is it something I ate yesterday.

Sigh. This cancer mental warfare is for the birds!
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

cartech78
Posts: 45
Joined: Thu Oct 25, 2018 6:22 pm

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby cartech78 » Wed Nov 28, 2018 7:25 pm

Cmac1275 wrote:
cartech78 wrote:Sorry to hear about these results. I posted to you awhile back about that Abbvie trial, My wife works there. I was at MSK when the Duke people were shadowing Dr.Kemeny earlier in the Month. What a small world. Im currently doing 3 rounds of FolFox here in Chicago and going back to MSK on Dec18th to see what surgery options i may have available if any. I also started my own little supplement regimen sorta under the table. Im taking 2g a day of Curcumin, 3g of Micronized Reservatrol, baby aspirin and considering another. Anyways I just wanted to wish you some luck with your new plan and I hope they get things under control.


Thank you, Cartech. Small world indeed. My oncologist was telling me how incredibly detailed and thorough Dr. Kemeny is. When my onc and I were discussing the possibility of Duke offering HAI, she cautioned me about the success rates at other hospitals that perform HAI implants. She said, Dr. Kemeney's results are basically unmatched. Having spent time with her in NYC, my onc understands why. That woman pioneered this treatment. Made a career out of it, actually. My onc told me she literally has binders upon binders of data, notes and algorithms to treat different situations. I'm glad a couple of MSK surgeons will be working with the oncology team here at Duke. Their experience will be key once they start performing the procedure.

I admit that I'm also considering using CBD/THC oils as well. It's hard to ignore the data suggesting real clinical benefit for cancer patients. But, I'm hopeful that this next round of chemo will resolve the lymph node inflammation so I can become eligible for HAI.

Side not on the supplements. I see a naturapathic doctor myself. She's cautioned me on taking Reservatrol during chemo. Data suggests it may interfere with the chemo treatments, apparently. Something to keep in mind in case you want to dig into.

She truly is an amazing women. She is about 73 years old and im sure is very wealthy. She probably could of retired years ago but I can tell helping people is all she really cares to do. I admire that greatly. Its weird talking to her because she really is very matter of fact and doesn’t have the best bedside manor but she is caring and is the best at what she does. I chose MSK because as you stated no one has done more pumps with greater success then they have. There liver surgeons are also some of the best as well. It is a pain to have to travel from Chicago to NewYork frequently but if you want the best i dont mind the sacrifice. I hope duke develops a successful pump program as I believe it can save A lot of lives. By the way the only supplements i take during Chemo are the baby Aspirin and the curcumin. I only do the others on my off weeks. Good luck my friend.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby Cmac1275 » Thu Nov 29, 2018 9:41 am

cartech78 wrote:
Cmac1275 wrote:
cartech78 wrote:Good luck my friend.


Same to you. I’ll be following your journey as long as you keep sharing it with us.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

User avatar
ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby ktwmn » Thu Nov 29, 2018 10:30 am

I also am going to Duke to start a trial. I sent you a PM.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

rp1954
Posts: 1393
Joined: Mon Jun 13, 2011 1:13 am

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby rp1954 » Thu Nov 29, 2018 7:37 pm

I hope that you are able to track some of the extra blood markers and panels that I've talked about, at least before and after any treatments, particularly CA199 (especially at least once), AFP, LDH, with hsCRP(and ESR) for an inflammation level(s). Also the trial is likely to be tracking more blood data, I would try to insist on all your personal blood data, especially after the administration period.

Cmac1275: ...I’m taking Curcumin, Fermented COD fish oil, Sulforaphane Glucosinolate, Modified Pectin Citrus, Vitamin D, Conium Maculatum, and loads of green tea.

If you list your supplement dosages, it will help our conversations distinguish usage between supportive amounts and cancer therapeutic amounts, for your benefit. Although I avoid "over advertisement", I did list many of ours early on (eg 2010) and discuss quantity in many areas since.

Cmac1275: ...a naturapathic doctor myself. She's cautioned me on taking Reservatrol during chemo. Data suggests it may interfere with the chemo treatments, apparently. Something to keep in mind in case you want to dig into.
If you could get more definite names or references from her, it might be important to you what basis she is reacting to.
Whether it is a series of animal experiments, what particular chemo molecules that might interact. We and other have used it for long times with 5FU (e.g. UFT, Xeloda) with good results. No so sure on data for oxi- and iri-.

Some papers:
Regulation of Cell Signaling Pathways and miRNAs by Resveratrol in Different Cancers
Resveratrol Oligomers for the Prevention and Treatment of Cancers
Resveratrol: A Double-Edged Sword in Health Benefits (despite its title, its pretty positive)
Resveratrol, a natural polyphenol, prevents chemotherapy-induced cognitive impairment: Involvement of cytokine modulation and neuroprotection
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby Cmac1275 » Fri Nov 30, 2018 9:59 am

rp1954 wrote:I hope that you are able to track some of the extra blood markers and panels that I've talked about, at least before and after any treatments, particularly CA199 (especially at least once), AFP, LDH, with hsCRP(and ESR) for an inflammation level(s). Also the trial is likely to be tracking more blood data, I would try to insist on all your personal blood data, especially after the administration period.

Cmac1275: ...I’m taking Curcumin, Fermented COD fish oil, Sulforaphane Glucosinolate, Modified Pectin Citrus, Vitamin D, Conium Maculatum, and loads of green tea.

If you list your supplement dosages, it will help our conversations distinguish usage between supportive amounts and cancer therapeutic amounts, for your benefit. Although I avoid "over advertisement", I did list many of ours early on (eg 2010) and discuss quantity in many areas since.

Cmac1275: ...a naturapathic doctor myself. She's cautioned me on taking Reservatrol during chemo. Data suggests it may interfere with the chemo treatments, apparently. Something to keep in mind in case you want to dig into.
If you could get more definite names or references from her, it might be important to you what basis she is reacting to.
Whether it is a series of animal experiments, what particular chemo molecules that might interact. We and other have used it for long times with 5FU (e.g. UFT, Xeloda) with good results. No so sure on data for oxi- and iri-.

Some papers:
Regulation of Cell Signaling Pathways and miRNAs by Resveratrol in Different Cancers
Resveratrol Oligomers for the Prevention and Treatment of Cancers
Resveratrol: A Double-Edged Sword in Health Benefits (despite its title, its pretty positive)
Resveratrol, a natural polyphenol, prevents chemotherapy-induced cognitive impairment: Involvement of cytokine modulation and neuroprotection


rp1954, Thanks as always for your feedback. I've been meaning to PM you about about the blood markers and supplement recommendations. I've been scouring your posts, but you have so many of them it's overwhelming at times.

Anyway, I asked my onc about testing for CA199. She kinda poo-poo'ed it as not being very useful for me. We'd considered it when we believed my CEA markers were no longer reliable. But, CEA is increasing and correlating with my new liver mets and growth.

As far as my dosages, here's what I'm taking:

Modified Citrus Pectin: 9.6g / day
Theracurcumin HP: 1200mg / day (provides 30% curcumin per dose)
Fermented Cod Liver Oil: 1500mg / day
Sulforaphane Glucosinolate: 70mg / day
Vitamin D3: 4,000 IU / day
Conium maculatum 200ck: 5 pellets each week. Don't know exact mg content.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

DarknessEmbraced
Posts: 3186
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Mixed bag kinda day: progression, genomic results, and trial

Postby DarknessEmbraced » Sun Dec 02, 2018 1:15 pm

I'm sorry about the new liver lesions!*hugs* I hope your chemo and clinical trial go well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17


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