Genetic mutations

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L0729
Posts: 21
Joined: Sat Mar 26, 2022 4:40 pm

Genetic mutations

Postby L0729 » Sun May 08, 2022 9:57 am

Can anyone explain about genetic mutations, I see some tumors are designated BRAF, KRAS, etc....looks like there's many....having these mutations makes chemo less effective?
Are these mutations there from the start or does the cancer change in response to chemo, radiation, time....so that these mutations evolve? Or is it unknown what causes the mutations?
Anticipating a liver resection soon, do I need to ask to have the genetic testing done?
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: 100
Joined: Tue Mar 01, 2022 1:18 am

Re: Genetic mutations

Postby Peregrine » Sun May 08, 2022 7:51 pm

Lo-oc wrote:Can anyone explain about genetic mutations, I see some tumors are designated BRAF, KRAS, etc....looks like there's many....having these mutations makes chemo less effective?

Are these mutations there from the start or does the cancer change in response to chemo, radiation, time....so that these mutations evolve? Or is it unknown what causes the mutations?

Anticipating a liver resection soon, do I need to ask to have the genetic testing done?

Hello Lo-oc,
You have asked about "genetic" mutations, but first of all a clarification needs to be made in the terminology you are using. What you are really inquiring about are called "genomic" mutations, not "genetic" mutations. The difference is explained in the post below:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65682&p=509935#p509935

In particular, what you are really concerned about is how genomic mutations might affect your treatment outcomes, and how treatment choices might depend on the genomic mutation profile of your primary tumor or depend on the genomic mutation profile of your metastases (which might possibly be different from each other).

In short, what you are interested in is personalized medicine based on a thorough and extensive review of your tumor and metastasis genomic profiles. This kind of objective is discussed in books such as those below:

https://www.amazon.com/Genomics-Personalized-Medicine-Everyone-Needs/dp/0190234768/

https://www.amazon.com/Introduction-Genomics-Arthur-Lesk/dp/0198754833/

Yes, as a patient initially diagnosed as Stage IV you definitely need to have genomic testing done. This should have been done already as it is the standard of care for Stage IV diagnosed patients, and it is needed in order to determine the best 1st-line treatment to start with (e.g., FOLFOX+Avastin, or FOLFOX+Vectibix, depending on the outcome of the genomic testing).

If you have not had any genomic testing done so far, then this suggests that you are not being treated at a hospital that follows current standards of treatment for Stage IV patients. If so, then it is urgent to get second- or third-opinions on your case from highly-qualified cancer centers near you. The fact that your medical team started you off on simple FOLFOX-6 regimen suggests that they are not paying close enough attention to your situation.**

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62768&p=494630#p494630

Thread: Can anyone help explaining what KRAS BRAF mutations mean?
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65789&p=509939#

=====
** Added later.
Since you have an MSI-status of "MSS" this means that they did in fact sample some tissue from your tumor and send it out at least for MSI testing. What is not quite so clear is whether they also requested to have the tumor tissue sample tested for KRAS/BRAF mutations. This is what you need to ask the oncologist about.
Last edited by Peregrine on Sun May 08, 2022 9:00 pm, edited 2 times in total.

Rock_Robster
Posts: 694
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Genetic mutations

Postby Rock_Robster » Sun May 08, 2022 8:33 pm

While I 100% agree with the message of Peregrine’s post, I’d also reflect that it’s reasonably likely that genomic testing was done, but the results not communicated. I’d be surprised if they did immunohistopathology to the point of MSS/MSI testing etc. without doing the basic SoC biomarkers. Rightly or not, many oncologists seem to start on FOLFOX as a kind of ‘default’ neoadjuvant treatment regardless of genomic results (although one could argue adding an EGFR inhibitor for RAS-wild would potentially be better).

So I suppose in short I’m saying - I would ask your oncologist before making too many other decisions around this.
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

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Peregrine
Posts: 100
Joined: Tue Mar 01, 2022 1:18 am

Re: Genetic mutations

Postby Peregrine » Sun May 08, 2022 9:14 pm

Lo-oc -

I agree with what Rock_Robster just said. He is Stage IV, while I am only Stage II, so it would be better for you to rely on feedback from Stage IV patients whenever you can because their feedback is based on first-hand experiences while mine is based only on second- or third-hand reports.

Take care. The journey is difficult, to be sure, and you need to inform yourself to the best extent possible as you travel onward.

L0729
Posts: 21
Joined: Sat Mar 26, 2022 4:40 pm

Re: Genetic mutations

Postby L0729 » Sun May 08, 2022 9:29 pm

Thank you for the insight. Will check with oncologist on 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: 694
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Genetic mutations

Postby Rock_Robster » Sun May 08, 2022 9:52 pm

Peregrine wrote:He is Stage IV, while I am only Stage II, so it would be better for you to rely on feedback from Stage IV patients whenever you can because their feedback is based on first-hand experiences while mine is based only on second- or third-hand

Sorry Peregrine, I wasn’t trying to be “stageist”! I have no doubt your knowledge on this is superior to mine. Just a recent observation that some oncs are very transparent with information, giving copies of reports, etc - while others seem to work on a more “need to know” basis and keep details to themselves. Will be interesting to hear if the testing had indeed been done.
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

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Peregrine
Posts: 100
Joined: Tue Mar 01, 2022 1:18 am

Re: Genetic mutations

Postby Peregrine » Sun May 08, 2022 10:13 pm

Lo-oc -

Since you have liver mets and possibly some lung mets, you might be interested in reviewing the profiles of some of the members here who have had both.

In the post referenced below you can click on the profiles that are coded LU+LI. These are some of the members here who have had to deal with both kinds of mets, and you might be able to tell from their signatures what sequence of treatment interventions they had.

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65477&p=508458#p508458

In your case, you would be focusing mainly on the liver mets, but the lung nodules are important to consider, too, since some of the possible liver interventions might not be approved if there are also confirmed mets in the lungs.

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Peregrine
Posts: 100
Joined: Tue Mar 01, 2022 1:18 am

Re: Genetic mutations

Postby Peregrine » Mon May 09, 2022 6:12 am

Lo-oc -

Do you have more details on the timing of the various interventions that you mentioned?

In particular, have you been given a timetable telling exactly what type of intervention will be done, how long each intervention will take as well as how long a recovery period will be needed between each intervention?

3/22 Start Folfox 6,
??/?? finish Folfox 6
?? - ?? recovery period (if any)
??/?? liver resection
?? - ?? recovery period (how long?)
?? - ?? chemo/radiation (what type? how long)
?? - ?? recovery period (how long)
?? - ?? rectal surgery (what type, and with or without temp ileostomy?)
?? - ?? recovery period (how long?)
?? - ?? Folfox 6
??/?? reversal of temp ileostomy(if relevant)
?? Start of 5-year surveillance period

In this journey, I think that it is very important to pay attention to all of the details and to leave no stone unturned. I think that you will always need to be on top of things to make sure that your treatment plan is proceeding as planned.

Do you know who your liver surgeon will be? Is he/she Board Certified? Do you know who your Radiation Oncologist will be, and whether he/she is Board Certified? In other words, do you know who all the members of your team will be and what their qualifications are? These things can be very important for successful completion of your series of interventions.

L0729
Posts: 21
Joined: Sat Mar 26, 2022 4:40 pm

Re: Genetic mutations

Postby L0729 » Mon May 09, 2022 10:51 am

Met w oncologist today. He said geonomic tests were ordered when pathology came in on rectal tumor. Those results were not posted in my chart , he had to check to let me know what they were We had a stand-off on infusion treatment today he is being very conservative with regard to liver enzymes (large spike after only 3 treatments). Today they are Alt63,AST 36. He’s afraid of causing damage to the liver , my position is the liver is already damaged with cancer Mets so why not just keep going. The compromise was no oxy, just 5fu. I’ve made good progress with 3 infusions of folflox, would hate to lose ground. He is checking w liver surgeon about doing the resection before the 6 folflox treatments , both Mets were originally resectable, he just wanted to see some shrinkage. I will be contacting him myself After the liver surgery I will be doing 5 weeks chemo radiation (I do not know how long recovery from liver surgery? I’ve met with colorectal surgeon who is top in this area for sphincter preserving surgery, dependent on how the rectal tumor responds to radiation. Mine is very low lying near anal verge. The hope is a temporary ileostomy, if he tells me it would be permanent I might not go that route, even if it would mean chance of Ned I’m not sure how long all the will take and then a follow up of 6 more cycles of folflox. Timing still seems kind of vague? Please let me know if there is anything I’m missing on asking questions/treatment protocol. Thanks for the tip on searching for other stage 4s with liver Mets
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: 100
Joined: Tue Mar 01, 2022 1:18 am

Re: Genetic mutations

Postby Peregrine » Mon May 09, 2022 10:20 pm

Lo-oc wrote:... Please let me know if there is anything I’m missing on asking questions/treatment protocol. Thanks for the tip on searching for other stage 4s with liver Mets

Questions to consider asking, some of them being more important than others ...

  • Medical Oncologist
    - How often are blood tests being done under Folfox? Before each cycle?
    - Which tests are being done? Liver panel/kidney panel/blood cell count WBC,RBC,etc.?
    - What were the results of your KRAS/BRAF genomic tests? Any mutations found?
    - What is the plan if any of these tests go out-of-range during treatment?
    - Are you taking any Tylenol Extra Strength medication - Note: too much Tylenol/paracetamol can cause liver failure: - Does your oncologist have a complete list of the medications you are taking, including any over-the-counter meds, herbal concoctions, etc.? This is important, because of possible drug-drug interactions.
    - Managing oxaliplatin under Folfox - Was anything ever done to modify or lower oxaliplatin dosage?
    - Is anything being done now to minimize long-term peripheral neuropathy due to oxaliplatin exposure?
    - What will be the regimen for your adjuvant chemotherapy, given that you dropped the oxaliplatin in the neo-adjuvant Folfox? Will it be 5FU alone? Folfiri (i.e., 5FU + Irinotecan)? or something even stronger?
    - Do you know which of the other approved chemo regimens are acceptable for your tumor mutation status in case your current regimen stops working?  And which regimens will not be recommended for you?
    References:
    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65284&p=510813&hilit=approved+drugs+colorectal#p507610

    https://www.empr.com/wp-content/uploads/sites/7/2020/08/FDA-Approved-Colorectal-Cancer-Treatments-0820.pdf

    -Ask the oncologist to explain to you the differences between standard chemotherapy, targeted therapy, and immunotherapy.
    .
  • Rectal Surgeon
    - What type of surgery is envisioned? AR, LAR, ULAR, APR, PE, etc.
    - What mode of surgery will be used? Open surgery? Laparoscopic surgery? Robotic surgery? Hybrid surgery?
    - Your T4 tumor .. is it aT4a or T4b tumor? Where, exactly is it located and where exactly is the T4 tumor breaching the lining of the rectum? How close is the T4 bulge to nearby important organs/structures, e.g., sphincter muscle? How easy will it be to get good circumferential surgical margins with a T4 tumor present?
    - What kind of protective or preventive measures will be taken during surgery, e.g., stents to protect the ureters from collateral damage, etc.
    .
  • Liver surgeon
    - Which lobe(s) have the mets? Are both mets in the same lobe?
    - What if other suspicious areas are seen visually during surgery? What then?
    - How long will it take for the liver to regenerate itself?
    - Has this surgeon already done a lot of complex liver surgeries? What kind of past liver-surgery experience has he had?
    - Will this surgery go ahead as planned if, in the meantime, the lung nodules have increased in size?
    - Will this surgery be an open surgery or a laparoscopic surgery?
    .
  • Radiation Oncologist - What kind of linear accelerator machine will be used for targeting the radiation to the T4 tumor? Varian? Siemens? other?
    - Will you be on your back, face-up in the machine, or on your stomach,face down in the machine?
    - How often will MRI scans be done during chemo/rad in order to monitor tumor regression?
    - What type of chemo will be used along with the radiation? 5FU by infusion? Capecitabine pills by oral route?
    - What kind of collateral damage could be done to adjacent uro-genital structures?
    - How long after completion of chemo/radiation before surgery can be attempted?
    .
  • Other questions
    - Are you male or female? This may be relevant for rectal surgery since the relative width of the pelvic cavity is different in males and females, with the male pelvis being narrower.
    - Do you have any important co-morbidities that are currently under treatment, e.g., Type II diabetes; hypertension; hypothyroidism, etc., etc.? (Some of the possible treatment interventions may be off-limits when a patient has certain serious co-morbidities.)

Rock_Robster
Posts: 694
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Genetic mutations

Postby Rock_Robster » Tue May 10, 2022 3:30 am

Good job following up with your oncologist. So does this mean no notable mutations (KRAS, NRAS, BRAF) were found?

I’m very surprised he’s concerned about those liver numbers enough to withhold oxaliplatin - they are very close to normal range now. I’m wondering if a second opinion might be in order here, although there may not be time for that anyway if you only have 1-2 cycles to go. It’s very good that the surgeon is now involved in the discussion now anyway.

Recovery from liver surgery depends a lot on the size and nature of the resection plus overall health/fitness of the patient, but 4-6 weeks is often given as a typical guide. It’s common to want at least a month’s recovery before commencing another treatment, to ensure proper healing isn’t interfered with.

It’s also usual to wait 8-10 weeks after long-course radiation before doing rectal surgery. This is because radiation takes some time to have full effect, and also the area will be very inflamed and difficult to operate on for at least 4-6 weeks. Some oncologists may recommend doing some more chemo during this 8-10 week period, although it isn’t standard.

Your primary tumour is very low at 1cm from the anal verge. Although it’s very understandable why you might want to avoid a permanent ostomy, I would recommend having an honest conversation with your colorectal surgeon about likely bowel function after stoma reversal if you went down this path. This is a decision that everyone has to make for themselves, but you should at least be informed of the pro’s and con’s. There is a lot of information about this topic available on the forum too, when the time comes (search for ‘LARS’).

Best of luck for the remaining chemo and liver surgery!
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

L0729
Posts: 21
Joined: Sat Mar 26, 2022 4:40 pm

Re: Genetic mutations

Postby L0729 » Tue May 10, 2022 6:20 am

thankful for all the information - it's helpful going forward, and there's a lot I don't know!!! Thank you for the references and your input, I really appreciate the help.
After meeting with oncologist, I checked on MYChart and it looks like he just ordered the tumor profiling. When we first met him, his take was there is only one stage IV, but your situation is an early stage IV and my aim is for cure. He explained the protocol would be 12 chemo treatments of FOLFLOX 6. The tumor profiling will be something he looks at once he sees scans that aren't favorable. Although I have nothing to compare to since he's the only oncologist I've had, he seems to not want to dwell on some of the negative stuff upfront, I on the other hand like as much information as possible. I have not had a CEA test, thought I did but that was a C reactive protein test (CRP), which is different, and that was in the normal range.
The oncologist seemed very hesitant about the oxy treatment with my liver, I think having metastases in the liver, delaying treatment is not great, even with the good scan results - I know he's concerned that if the liver gets too vulnerable I might not be able to treat at all, he mentioned seeing a liver doctor for some insight into what's going on. He has me scheduled for a reduced dose oxy with slower infusion in two weeks if the liver enzymes are okay. I am older than you Rock_Robster, so maybe age is a factor? though I don't have any other health issues. My scan does show the liver has mild hepatic steatosis, which I believe is mild fatty liver? probably from the chemo treatment. I think the liver surgeon will be able to give me his thoughts -and I meet with him next Thursday. He originally explained to me that one in four liver resections result in cure (no occurrence), my situation I may see recurrence. I'm not sure who I would seek out for a second opinion, should I be looking at major cancer hospitals, (I live in-between Boston and NYC), I don't think my insurance will cover that.
As far as the rectal resection/stoma, that's a tough one I haven't wrapped my head around yet, I know if it's life saving, and I'm faced with that decision I probably will go with the permanent bag, though I can't imagine a life like that, I need to talk to others who have that experience. If the chemoradiation shrinks the rectal tumor away from the AV enough, and he gets the margins he needs, he says it will be temporary, though I have read about LARS and I might not ever get the normal bowel function back.
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: 100
Joined: Tue Mar 01, 2022 1:18 am

Second opinion resources

Postby Peregrine » Tue May 10, 2022 7:00 am

Lo-oc wrote:I'm not sure who I would seek out for a second opinion, should I be looking at major cancer hospitals, (I live in-between Boston and NYC), I don't think my insurance will cover that.

  • There are several major cancer hospitals in your part of the country. Here is a link to search for NCI Comprehensive Cancer Centers:

    How to Find an NCI Designated Comprehensive Cancer Center:
    https://www.cancer.gov/research/nci-role/cancer-centers/find

  • For second opinion support you might want to check out this web-site:

    The Second Opinion Project
    https://paltown.org/second-opinion/

      "Most Stage IV CRC patients are considered terminal by their care teams, and the standard of care is “chemo for life.” Some Stage IV patients can benefit from more aggressive treatment, however; these patients can survive well past 5 years, and can even achieve a durable “no evidence of disease” response. In most cases, patients need to seek out a second opinion to understand and access these more aggressive treatment options.”

      Felix Lu
      The Second Opinion Project provides reimbursement of up to $500 for expenses for patients seeking a second opinion on treatment options.
      Applications are open to COLONTOWN members who are currently stage IV. Patients with primarily liver involvement will be given top priority; other stage iv patients will be considered as resources are available.
      This program is administered by PALTOWN on behalf of the Lu Family Fund. Applications are reviewed and approved by the Lu Family Fund.
      How the Program Works
      Once your completed application is submitted, it will be reviewed by PALTOWN staff and forwarded to the Lu Family Fund for consideration. You will be contacted about the status of your application within 10 business days.

      If approved, we will ask you to submit receipts via email within 5 business days of your appointment; these can be photos or screenshots. Eligible expenses include:

      Travel, including air or train fare, parking, gas, rideshare or taxi
      Lodging (Hotel, AirBnB) for up to 2 nights
      Out-of-pocket expenses for the appointment itself
      You will receive reimbursement from the Lu Family Fund via PALTOWN as soon as your receipts have been submitted and processed. Reimbursement can be paid via check or PayPal"
  • Here is a link to the  U.S. News & World Report rankings for best cancer hospitals in the U.S.

    https://health.usnews.com/best-hospital ... ngs/cancer

    You can select your state or city by using the Filter drop-down list, then you can click on View Matches to see the hospitals in your area that meet your filter requirements. Then scroll down the list to see if you can find your hospital there.  If your hospital is among the top 50 in the U.S. then there will be some ranking statistics on cancer, otherwise all you will see is just a basic description of your hospital and its facilities and perhaps its ranking in other, non-cancer specialities.

    In this way you can tell if your hospital is highly ranked or not. If you are not being treated in a hospital that's highly ranked for cancer, then you might want to consider transferring to a different nearby hospital that your insurance will cover. If this is not possible then at least you should consider getting second opinions from the best cancer hospitals nearby.

    You can also use the link above with a  different set of filters to search for specific procedures such as Colon Cancer Surgery. You can also use filters to find the best cancer doctors (oncologists) in your area. You just need to practice using the different filters available.
    .
  • Board Certification
    Once you have found your hospital and have names of the doctors there, you can check whether they have been Board Certified in their specialty. To do this, click on the link below and look for the "Is Your Doctor Board Certified" section near the bottom of the web page. Then enter the doctor's last name, select your State from the list then select the relevant specialty from the drop-down Specialty list. Then click on the "Find my Doctor" button to check his/her certification status.

    Certification Matters website
    https://www.certificationmatters.org/
Last edited by Peregrine on Tue May 10, 2022 6:59 pm, edited 2 times in total.

Rock_Robster
Posts: 694
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Genetic mutations

Postby Rock_Robster » Tue May 10, 2022 7:48 am

Thanks again for the update. I definitely have to put my hand up here and say “Peregrine was right”. I’m not a doctor, or your doctor, but there are a lot of red flags for me here. You are in a great location geographically to get second opinions from a wide range of NCI designated centres, provided you’re able to find one that works with your insurance. MSKCC is an an obvious one of course, but you also have Dana-Farber, a few others in NYC, and even MGH.

At this point, I’d strongly encourage it. It may well be that nothing changes with your treatment plan in the short term (what you’ve done so far seems very standard and reasonable), but there’s a number of things going on here that do not give me confidence that you would be getting gold-standard care if things get more complex down the line. And if there’s one thing I’ve learned, with stage IV it pays to think a couple of moves ahead and play the long game.

PS: for the record, “Rob’s red flags” so far:
1. no basic (standard of care) biomarker testing done for stage IV patient
2. believing genomic testing is only relevant if 1st line treatment fails
3. no baseline or routine CEA / CA19-9 testing done
4. has not mapped out the overall treatment plan for you with timings, etc.
5. withholding standard-of-care neoadjuvant chemo for seemingly normal asymptomatic liver enzymes (suggesting a specialist consult but not referring/speaking directly?)
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

L0729
Posts: 21
Joined: Sat Mar 26, 2022 4:40 pm

Re: Genetic mutations

Postby L0729 » Tue May 10, 2022 9:20 am

thanks for clarification on red flags!!!!
I just spoke to the oncologist on the phone this morning as I feel I have to push on the treatment delay.
He told me he is being aggressive with treatment - He agrees that people do get treated with oxy (which he feels is the culprit in the liver enzyme jump), while having higher than normal liver enzymes. His caution is because only after 3 treatments with FolFLox, the liver enzymes went from 37 before the third treatment to 319 before the fourth treatment for ALT, and 30 before the third and 127 before the fourth treatment for AST. He says he does not usually see that kind of jump so early in the FolFLox treatment, he does not want the liver compromised and not able to treat at all, thus his decision to withhold oxy for the third and fourth treatment and only 5FU on this fourth treatment. He is waiting to hear back from the liver surgeon on this issue, and like I mentioned he is planning on doing half dose of oxy next cycle with the 5FU, if liver enzymes are okay. I told him my concern is withholding the oxy, I'm risking spread, his reply is my scans last week I have improved, and another 2 weeks is not going to make a difference, I'm still not comfortable with that. Maybe the liver surgery will happen sooner, but I'm guessing on still have to get on the surgical schedule so do not want to stop treating with the oxy. I might start the process of obtaining on second opinion, but feel I should hear out the liver surgeon next week. You are right, I think you have to plan ahead for the curveballs with a stage IV diagnosis.
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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