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

Posted: Mon Nov 26, 2018 10:06 pm
by Cmac1275
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.

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

Posted: Tue Nov 27, 2018 6:33 pm
by stu
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

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

Posted: Tue Nov 27, 2018 6:46 pm
by cartech78
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.

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

Posted: Wed Nov 28, 2018 1:39 am
by Punky44
Praying for you that your new plan brings you as much success as the first time!

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

Posted: Wed Nov 28, 2018 10:51 am
by Cmac1275
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.

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

Posted: Wed Nov 28, 2018 10:54 am
by Cmac1275
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.

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

Posted: Wed Nov 28, 2018 10:54 am
by Cmac1275
Punky44 wrote:Praying for you that your new plan brings you as much success as the first time!


Thank you!

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

Posted: Wed Nov 28, 2018 1:18 pm
by stu
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

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

Posted: Wed Nov 28, 2018 3:54 pm
by Cmac1275
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!

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

Posted: Wed Nov 28, 2018 7:25 pm
by cartech78
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.

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

Posted: Thu Nov 29, 2018 9:41 am
by Cmac1275
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.

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

Posted: Thu Nov 29, 2018 10:30 am
by ktwmn
I also am going to Duke to start a trial. I sent you a PM.

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

Posted: Thu Nov 29, 2018 7:37 pm
by rp1954
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

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

Posted: Fri Nov 30, 2018 9:59 am
by Cmac1275
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.

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

Posted: Sun Dec 02, 2018 1:15 pm
by DarknessEmbraced
I'm sorry about the new liver lesions!*hugs* I hope your chemo and clinical trial go well!*hugs*