Genetic mutations

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Peregrine
Posts: 48
Joined: Tue Mar 01, 2022 1:18 am

Patient Navigator and "CRC Buddy" programs

Postby Peregrine » Tue May 10, 2022 10:14 pm

Lo-oc -

It seems to me that you might benefit from having contact with a Patient Navigator, or a Nurse Navigator.

Does your hospital have such a program? If not, you could try applying for a colorectal cancer "buddy" from one of the organizations that offer buddy programs:
.
  1. Colorectal Cancer Alliance, Patient Navigator Program

      "Call our free Helpline at (877) 422-2030 to speak with a Certified Patient & Family Support Navigator. We’re here to support and guide you through your screening and colorectal cancer journey.

      Our certified Patient & Family Support Navigators are here to connect you with a vetted Buddy who has been through a similar diagnosis to offer meaningful and useful advice that helped them get through colorectal cancer."

    CCA Buddy Program application
    https://ccalliance.tfaforms.net/77

      "... I actively participate in a buddy program with the Colon Cancer Alliance. The program allows me to share my story with newly-diagnosed patients and offer them hope. This is one of the most rewarding things I do..." Marty Andrews (Colon Club) - Reference: https://www.colonclub.com/our-stories/colon-cancer/marty-andrews
  2. The Colon Club's buddy program: The Colon Connection

    Link to apply for a Colon Connection "buTTy":
    https://www.colonclub.com/programs-support/colon-connection
    .

Lo-oc
Posts: 14
Joined: Sat Mar 26, 2022 4:40 pm

Re: Genetic mutations

Postby Lo-oc » Thu May 19, 2022 9:50 am

follow up on my liver enzymes situation - I had a consultation with the liver surgeon today. Although the rise in liver enzymes does not overly concern him, he is in agreement with the oncologist on not putting more strain on the liver right now. He was pleased with the shrinkage in the two mets, and is planning on operating in two weeks - he does not feel more chemo right now is the way to go, so I am assuming chemo treatment scheduled for next Tuesday will be canceled. The liver surgeon is planning on doing the surgery laparoscopically, completely resecting the larger met, and using ablation on the smaller one which is very close to a major vein. The met is under 1 cm, (.9) so he will use ablation on that, which he says is just as effective as resection of a smaller met. both of this mets are in the right lobe posterior.
After recovery from surgery, I will start radiation for 5 weeks (the cold-rectal surgeon said this will determine how he prcoeeds, the rectal tumor shrunk width wise after my initial chemo, but the radiation is the only think that may make it shrink from the AV.
Genetic testing was ordered on the original tumor, so waiting on those results.
Is there anything I should consider at this point (still wondering about a second opinion?) It's worrying not to have any more chemo at this point (I believe that is what the oncologist will choose to do with the liver surgeon on board) -chemo feels like a crutch to me, I worry about disease spread without, but you have to be off it to go through some of these procedures, and of course, there will be more chemo after, hopefully my liver will allow it !l Thanks........
2/22 - Dx with stage 4 rectal cancer 4cm on/1cm from AV - age 60
T4, poorly diff., EMVI + MSS
3/22 - CT/MRI 2 liver mets 2.1 cm and 1 smaller close to hepatic vein
3/22 Infusion - plan 6 treat. Folflox 6, liver res., chemoradiation, rectal surgery 6 more cycles Folfox
5/5 - CT/MRI, lung nodules no change, liver lesions red. to 1.1 and .9cm, rectal tumor/suspicious lymph node red..

Nor Cal
Posts: 55
Joined: Sun Dec 06, 2020 8:18 pm

Re: Genetic mutations

Postby Nor Cal » Thu May 19, 2022 11:37 am

I believe a 2nd opinion is a good decision for everyone. They'll likely confirm your current treatment plan, and if so, should give a little more confidence in the approach (at least worked that way for me). Plus I think it's good to be on people's radar in case you need to discuss your case further with them in the future.

I've gotten opinions from 3 oncologists, 3 colorectal surgeons, 2 liver surgeons, 2 interventional radiologists, and have been referred to 2 hepatologists I've yet to meet with.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - Present: 30 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

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Peregrine
Posts: 48
Joined: Tue Mar 01, 2022 1:18 am

Re: Genetic mutations

Postby Peregrine » Thu May 19, 2022 12:50 pm

Lo-oc wrote:... Anticipating a liver resection soon, do I need to ask to have the genetic testing done?

Lo-oc wrote: ... Is there anything I should consider at this point (still wondering about a second opinion?) ........

Lo-oc -
One thing you might do is to ask the liver surgeon if he is planning to send the large met out for any kind of genomic testing after it has been resected. Or perhaps your oncologist might have an opinion on this, too. It might be interesting to find out if the metastatic tissue in the liver has the same mutation profile as the tissue biopsied from the original primary tumor. Presumably they would have the same profile, but you never know... Sometimes strange things happen and then they take you by surprise.

Lo-oc
Posts: 14
Joined: Sat Mar 26, 2022 4:40 pm

Re: Genetic mutations

Postby Lo-oc » Thu May 19, 2022 1:30 pm

Thank you, I will definitely ask about this
2/22 - Dx with stage 4 rectal cancer 4cm on/1cm from AV - age 60
T4, poorly diff., EMVI + MSS
3/22 - CT/MRI 2 liver mets 2.1 cm and 1 smaller close to hepatic vein
3/22 Infusion - plan 6 treat. Folflox 6, liver res., chemoradiation, rectal surgery 6 more cycles Folfox
5/5 - CT/MRI, lung nodules no change, liver lesions red. to 1.1 and .9cm, rectal tumor/suspicious lymph node red..

Rock_Robster
Posts: 679
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Genetic mutations

Postby Rock_Robster » Thu May 19, 2022 7:28 pm

Hi Lo-oc, thanks for the update. It sounds like a very sensible plan to me. I’m glad the liver surgeon isn’t worried and is happy to proceed to resection now - that’s great news! I’m always happier if the person actually doing the surgery makes the call on how much chemo, as they know what they need in terms of margins etc. (and preserving enough liver function).

One question - do you know what type of ablation they’re proposing? Reason I ask is I understand that the more common thermal ablations (like RFA and cryoablation) tend to be less effective when performed close to major veins and arteries, due to the heat sink effect (where the blood flowing essentially carries the heat away from the tumour and can result in an under-treated margin). My surgeon was never comfortable ablating my tumour near my hepatic vein for this reason, and we went for a wedge resection instead. There are other techniques which may be less susceptible to this effect (eg IRE, MWA) that might be worth discussing as alternatives.

Good luck with it all,
Rob
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

Lo-oc
Posts: 14
Joined: Sat Mar 26, 2022 4:40 pm

Re: Genetic mutations

Postby Lo-oc » Thu May 19, 2022 7:49 pm

I do not know what type of ablation he will be doing. I did not realize there were different methods. Great question I will direct to him, thank you for that.
2/22 - Dx with stage 4 rectal cancer 4cm on/1cm from AV - age 60
T4, poorly diff., EMVI + MSS
3/22 - CT/MRI 2 liver mets 2.1 cm and 1 smaller close to hepatic vein
3/22 Infusion - plan 6 treat. Folflox 6, liver res., chemoradiation, rectal surgery 6 more cycles Folfox
5/5 - CT/MRI, lung nodules no change, liver lesions red. to 1.1 and .9cm, rectal tumor/suspicious lymph node red..

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Peregrine
Posts: 48
Joined: Tue Mar 01, 2022 1:18 am

Re: Genetic mutations

Postby Peregrine » Fri May 20, 2022 1:31 am

Lo-oc -

Another couple thoughts ...

  • For a second opinion you could try to find a good Naturopathic Doctor (ND) near you who could give you some alternative ideas on how to tackle your liver problem and how to change your lifestyle and diet to reduce systemic inflammation in your liver, since systemic inflammation is one of the things that promotes rapid growth of micro-metastases. See this post for more details. I think there are probably some good ND's near your location. It's worth it trying to find a good ND near you who can explain things to you and give you good tips on how to reduce systemic inflammation. Also, he can give information on biomarkers of systemic inflammation, like hsCRP, and others, that you might want to monitor on a regular basis.

    How to Find a Naturopathic Doctor Near You
    https://naturopathic.org/?
    .
  • I think you should also re-read Rock_Robster's list of red flags, because you really need to get a good understanding of what all your options will be in the future, especially if the post-op chemo fails and you need to advance to 2nd-line or 3rd-line treatment options. You need to have your team explain to you the range of options available to you. And this might even include eventual participation in an MSS clinical trial if one is available for your type of tumor mutation status.

    Late Stage MSS Colorectal Cancer Clinical Trials Finder
    https://fightcolorectalcancer.org/resources/late-stage-mss-crc-trial-finder/
Last edited by Peregrine on Sat May 21, 2022 10:25 am, edited 1 time in total.

User avatar
Peregrine
Posts: 48
Joined: Tue Mar 01, 2022 1:18 am

Re: Genetic mutations

Postby Peregrine » Sat May 21, 2022 12:01 am

Lo-oc wrote:... Is there anything I should consider at this point (still wondering about a second opinion?) ........

Lo-oc -

As others have already said, getting a second opinion is very important, especially for patients initially staged as Stage IV "inoperable, incurable". Even if you have to get 2 or 3 additional second opinions it may be worthwhile making the effort and enduring the extra expense. Actually, it could be a bit risky to "put all of your eggs in one basket" and depend on only one doctor's opinion, because this single opinion might turn out to be narrow, biased or uninformed.

You can read the story of one such Stage IV liver met patient here. I encourage you to take the time to read the article.

Lo-oc
Posts: 14
Joined: Sat Mar 26, 2022 4:40 pm

Re: Genetic mutations

Postby Lo-oc » Sat May 21, 2022 6:14 am

Thanks Peregrine. I totally agree with what you’re saying regarding being proactive re 2nd opinion. Right now I am an “early” stage IV if there is such a thing, two Mets to the liver that were initially operable, the liver surgeon wanted to get them smaller with chemo, which has happened. The oncologist has gone with what seems to be standard treatment 6 cycles Folflox, liver resection, radiation, rectal resection, possible reversal and 6 more cycles of Folflox. Given the good response to 3 cycles of folflox I will have the liver resection in two weeks. The liver surgeon told me that 1 in 4 will have no more liver Mets, so I know that reoccurrence will probably happen From everyone’s advice here on this really helpful forum, this is what I need to find out - what’s the plan if a..b.. or c occurs going forward.
I will be paying out of network going to the major cancer hospitals in Boston or NY, if that’s what I have to do I will, have a large deductible right now….
I’m waiting on the genetic profiling of the tumor. Having some issues with the oxi pushing up the liver enzymes, so this is why I am questioning the oncologist, the liver surgeon seems in agreement with the oncologist to resect now and not stress out the liver anymore. I am going to inquire about the ablation as the one met is close to a major vein. There’s a lot to take in with this, lots of information and overwhelming . I am benefiting from everyone’s experiences on here. Thank you
2/22 - Dx with stage 4 rectal cancer 4cm on/1cm from AV - age 60
T4, poorly diff., EMVI + MSS
3/22 - CT/MRI 2 liver mets 2.1 cm and 1 smaller close to hepatic vein
3/22 Infusion - plan 6 treat. Folflox 6, liver res., chemoradiation, rectal surgery 6 more cycles Folfox
5/5 - CT/MRI, lung nodules no change, liver lesions red. to 1.1 and .9cm, rectal tumor/suspicious lymph node red..


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