First post - looking for opinions on next treatment move

[FJE]

Hello everyone:

I wanted to check in with my first post and introduce myself to everyone.... I also wanted to see if anyone had any opinions as to what I might want to do with my next treatment move. Looking around the forum here, it seems like there is a host of knowledge and experience to draw on.

About me:

I was originally diagnosed in July 2015 (at age 38) with a stage IIIa (locally positive lymph nodes) NRAS mutated rectal tumor. I underwent neoadjuvant radiation + capecitabine, surgery, then a full course of adjuvant FOLFOX6. I finished in May 2016. In January 2017, a few lung mets were found, and for the last year I have been using surgery and SBRT to address those. However, on my most recent PET a few bone mets and ‘hot’ lymph nodes were identified, so I am now looking at moving into systemic treatments.

My question:

My disease burden is still very light, and remain exceptionally active (I was contemplating running my first ultra marathon before these new mets were found). I have no other medical problems, and am in excellent health. FOLFIRI + Avastin would typically be the next step. I am also in a position where I am able to participate in and qualify for a few different immunotherapy clinical trials. Has anyone had experience with skipping the FOLFIRI and doing a clinical trial? I’m thinking about it mostly from a quality of life standpoint..... I realize a lot of these new immunotherapies are unproven, but their side effects seem more tolerable. If something doesn’t work, I can always go on FOLFIRI later. I don’t have much disease and even if it gets worse it will likely take a while to catch up to me. On the flip side, there is no reason to think that I wouldn’t tolerate FOLFIRI (I worked full time on FOLFOX) and my impression is that in my situation people can be on and off FOLFIRI for many years with survival extending benefit. In a few years, immunotherapy might be improved. Any thoughts?

Thanks.

[ppanamared]

Your health, age and experiece with chemo sounds like what I have went through and the folfiri has been basically some hiccups for a day or so and thats it really. I am out playing with my baby outside after work all week of the treatment so I bet you will have no problem working(just like the folfox with avastin, just less tingle). I will have to say the folfiri with avastin has really only kept things stable for me, the folifox was a beast and really did its job. Just keep watching things closely if you decide to just do maintenance chemo or other options, things that are hidden can grow and spread fast for some people. I started maintence with nothing showing anywhere, 2 months later my abs were full of deposits.Take care I sure you will do fine whatever you choose:)

[WarriorSpouse]

Welcome here, but I am sorry to see that you are going through.

My wife is on maintenance chemo with Zeloda (5FU pills) and Avastin. It has kept her NED for a number of years now and is still working.

It sounds like, from your post, that you are at Stage IV now with lung mets... so make sure you visit a major cancer center in your area for a serious second opinion. The major cancer center should outline the most aggressive treatment; and based on your youth and current excellent physical health (minus CRC) you will be well positioned for success.

My wife has heard lots of opinions from various oncologists, but the Doctor from the major cancer center said to hit it hard and often because it is easier to control. Avastin seems to be the magic drug for her and has not allowed any growth that has been seen with scans. She has been on it for over 3 and a half years now with great success.

Best wishes with your progress forward.
WS

[rp1954]

First, although fitness and prior lack of side effects on folfox may have some positive correlation, individual variation including genetics make such predictions very speculative. There have definitely been patients with inversion, fine on one chemo, a trainwreck on another.

If you are looking for a low footprint option with a big upside, I would look into ADAPT papers by Dr Edward Lim, with capecitabine (Xeloda) and celecoxib (Celebrex) for mCRC. This therapy has been posted on this board extensively, especially by Maia. It is also possible to extend an ADAPT type strategy with additional biomarkers and mild adjuncts for immunological and targeted molecular attacks by supplements and mild drugs. My posts more concern this latter part.

Folfiri based treatments (plus or minus Avastin, Erbitux) have tended to wear down patients over 1.5 - 4 years of treatment time. Metronomic 5FU drugs and maintenance regimes can run 7 yrs to over 10 years with more grace. Both approaches have been ameliorated for side effects, and had further extended run times by immunological and integrative support.

[O Stoma Mia]

..About me:

I was originally diagnosed in July 2015 (at age 38) with a stage IIIa (locally positive lymph nodes) NRAS mutated rectal tumor. I underwent neoadjuvant radiation + capecitabine, surgery, then a full course of adjuvant FOLFOX6. I finished in May 2016. In January 2017, a few lung mets were found, and for the last year I have been using surgery and SBRT to address those. However, on my most recent PET a few bone mets and ‘hot’ lymph nodes were identified, so I am now looking at moving into systemic treatments.

My thoughts are that it would be good if you could create a Signature so that readers could see at a glance what your situation is. Then more people might be encouraged to reply to your post.

Here is a template that can get you started in creating a signature:

To create a signature, click on the link below. You can have up to 512 characters (including spaces) in your signature.

http://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

Some items that you could include in your signature are given below:

Age & Sex
DX: Rectal Cancer (RC) or Colon Cancer (CC)
Tumor Location: If RC, then upper, middle or lower rectum, and distance from anal verge (AV). If CC, then cecum, ascending colon, hepatic flexure, transverse colon, splenic flexure, descending colon, sigmoid colon, or recto-sigmoid junction, etc.
Tumor type: Adenocarcinoma; villous adenoma; signet ring-cell carcinoma, etc.
Tumor size (in mm or cm)
Tumor grade:

G1: Well differentiated (low grade)
G2: Moderately differentiated (intermediate grade)
G3: Poorly differentiated (high grade)
G4: Undifferentiated (high grade)

TNM code: e,g, T3N0M0, etc
Stage : Stage I, Stage II, Stage III or Stage IV (with subscript, if applicable)
Positive lymph nodes: eg., X positive out of Y sampled.
Mets: Location of remote metastases, if any (e.g., mets to liver, mets to lungs, etc)
Baseline CEA value (if known)
Lymphovascular invasion (LVI) (if known): present vs. absent
Perineural invasion (PNI) (if known): present vs. absent
Surgical margins (proximal, distal, circumferential): clear or involved
MSI status (if known): MSI-H, MSS, etc.
Lynch status (if known)
KRAS/BRAF status (if known)
Primary surgery type:

LAR, ULAR, TME, EMR, APR, Laparascopic vs. open resection, polypectomy, proctosigmoidectomy, colectomy, hemi-colectomy, sigmoid-colectomy, etc...

Ostomy surgery: Ileostomy, or colostomy, or no ileo surgery
Radiation therapy (if any): Chemo/radiation
Chemotherapy (if any): e.g., XELOX(CAPEOX), FOLFOX, FOLFIRI, Xeloda monotherapy, 5FU/LV, etc.
Immunotherapy, targeted therapy (if any)
Clinical trials (if any)
etc.
- - -
NOTE: Here is a list of acronyms if you need some help in understanding the jargon typically used in signatures:

List of Acronyms
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=5366&p=419139#p419139

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[FJE]

I put some information into my signature, as suggested. It’s a work in progress......

Thanks to everyone for the input.

At this point, I’m actually kind of leaning toward doing a clinical trial. I get care at a big cancer center (one of the biggest) and as was implied in this string earlier, everyone has told me to be as aggressive as possible - FOLFIRI or otherwise. I was actually a little surprised to have my primary oncologist tell me he thought doing an immunotherapy trial was a reasonable gamble in my situation. His thought was that my disease burden is light enough that I can tolerate a failure or two of a clinical trial without any significant impact on my clinical situation. I can always go back to FOLFIRI. My local center has its own clinical trials, and I have also gotten put in touch with NCI/NIH folks. Talked with the TIL folks there, and looked into cancer vaccine stuff as well. I’ll keep everyone updated as to what this next adventure brings.......

[rp1954]

Our experience with lymph nodes - everyday without meaningful enough chemistry increases hazard. Kind of what we see frequently, at least with KRAS/BRAF mutant and CA199 related biologies, types for a majority of advanced CRC patients.

As for clinical trials, many are too early stage or too unambitious to yield likely benefits over other choices, like ADAPT well monitored and extended. ADAPT extended can be a high quality of life option.