Stage 4 colon Cancer moved to Lungs for the 2nd time AGE of Patient 55

persistance2
persistance2 Member Posts: 5 Member
edited July 2 in Colorectal Cancer #1

Age: 55

male

Living in Mexico and will fly anywhere in the world for top notch

care

Current medical provider: Kaiser SoCal

Treatments/Diagnosis: Jan 2019 colonoscopy found a tumor.  No sign of cancer in my blood.  CEA normal. 

March 2019 colon resection to remove stage 3n2 tumor and lymph nodes of

descending colon.  After 3 months of

healing June 2019 full spectrum chemo using Oxaliplatin for 6 months. Discontinued

the oxi about 4 months in due to neuro damage. this chemo took out my left knee

and now have bad arthritis. gained 50 lbs during chemo.  I was fasting 2 days before chemo at the time

and 3 days during and taking pro-biotics.

Metastasis to new location Aug 2020 then told in Dec 2020: CT

showed metastasis to Right lung now stage 4 and PET/CT along with lung biopsy

confirmed this finding. Bloodwork normal no increase in CEA.  Spring 2021 did SBRT radiation for 3 treatments

and then did chemo I believe with Fulfox. Chemo lasted for 4 months out of 6

due to me getting pneumonia.  Then pneumonia

cleared up after 2 months of treatment and CT in NOV 2021 show No signs of

tumors. gained 50 lbs during chemo.  Diet

or fasting protocol wasn’t followed during this treatement

2021 OCT began keto diet and intermittent fasting and lost 50lbs as

of end of Feb 2022

2022 March: CT results showed a tumor at old location 1cm, however

I felt it might be due to having covid or some nasty bug in Jan. so I redid CT

in May 2022 and tumor increased to 2cm. June 2022 did a Pet/CT and CT guided

biopsy.  Conclusion is tumor has returned

or a new one in same location has developed. Pet/Ct shows no other sites where

it has moved to. Tumor has no Uptick in MMRd or MSI.  I don’t believe I am a candidate for

Dostarlimab which works on 10% of colon cancer tumors but they need to have the

MMrd/MSI deformations.

Kaiser oncologist wants to start me on Xeloda 500mg asap and get

blood work done while I wait for Pulmonary consult to see if tumor can be

removed. I don't feel a 3rd round of "STANDARD CARE" with chemo only

will give better results.  So I am

looking in other directions.

I have come across a Dr by the Name of Jonathan Stegall MD out of The Center for Advanced

Medicine.

Has anyone had any success or know of successes via his process? I

am leaning towards spending the $80k for his treatment, however I am at a loss

because as I can't find reviews of his clinic or his work. His podcast Cancer

Secrets is how I found him. However, he has a bunch of ecomm stuff attached to

him and since I did ecomm for many years I know how that space can be and it’s

making me skeptical. Obviously, they don't take insurance and will want a %

paid up front. Thankfully we have plenty of savings even in this horrid economy

so that the 80K won’t hurt us or how we live.

I have 3 young kids (1 a newborn) and they are what keep my

mindset on point and keep me visualizing beating this disease and being there

for each of their weddings.  I am a

massively strong minded individual and I know for certainty mindset is 90% of

this battle. However, I am asking for assistance in regard to the other 10% and

that is treatment options. I like the integrative idea because standard Kaiser

HMO has not succeeded to my expectations on the last 2 tries and I feel a 3rd

will not be different.

 

I am looking for assistance with:

Is there someone better than Dr Stegall i might want to fly and

meet?

Is there better clinic that deals with stage 4 colon cancer that i

might want to fly to and meet?


Do you have a recommendation on a different Integrative Oncology Dr that

specialized in stage 4 non-mutated colon cancer?

is there a treatment protocol i am not aware of that might want to

research?

I am open to suggestions, and I can fast and do things that are

difficult.


Thanks in advance for any positive input

Comments

  • Diane_K
    Diane_K Member Posts: 82 Member

    I'm sorry you have this terrible cancer. I have stage 4 colon cancer and I have now been cancer-free for 5 years and 5 months. Who knows if I have just been lucky, or if my treatments and lifestyle changes contributed to this long remission. I went through two six-month periods of chemo. My cancer spread to two tumors in my liver and three in my lungs. They were able to remove all of them with clean margins surgically. In addition to these conventional therapies, I followed an integrated cancer plan from Dr. Keith block, https://blockmd.com/ I had a phone consultation with Dr. Block and followed the cancer plan in his book, Life Over Cancer. I never visited his clinic but it's located outside of Chicago. They treat patients with surgery, radiation, and chemotherapy in addition to a whole-body approach.

    Best wishes with your search for a treatment plan.

  • persistance2
    persistance2 Member Posts: 5 Member

    Thanks for the referrall. What chemo cocktail worked for you?


    Also

  • Diane_K
    Diane_K Member Posts: 82 Member

    The first was Folfox for six months, and then after it spread to my lungs I had another six months of Folfiri.

  • persistance2
    persistance2 Member Posts: 5 Member

    I want to say I did oxiplatin for 4 months but I don't know what it was Paired with and then spread to my lungs and I think then I did folfox.

    I am going to review my record to confirm. I wondering if I shouldn't have had my lobe removed after it went away to keep it from reoccurring

  • abita
    abita Member Posts: 1,135 Member

    Your oncologist was okay with you getting surgery when it was in lungs and liver? I had a liver resection and colon resection at original diagnosis. When I had my liver recurrence was told that too close to something to remove surgically. Chemo shrunk them to foci cells but then they grew back and showed one in lung when that chemo stopped working. Was referred to a specialist. Where I am now, when I asked about surgery, my oncologist said that was possible because I was metastatic. So very curious, since I am now down to the "last line" of chemo drugs.

  • Diane_K
    Diane_K Member Posts: 82 Member

    Hi Abita,

    I think because all my tumors were in places where they could remove, the surgeons agreed to take them out. It's really the surgeons who decide. My oncologist wanted to radiate my last lung tumor but I wanted it cut out, so I made an appointment with my surgeon and he agreed to do the surgery independently of my oncologist's plan to radiate.

  • Diane_K
    Diane_K Member Posts: 82 Member

    I didn't have a lobe removed. They removed three small wedge sections of my lungs. It did not affect my lung capacity. I'm still able to jog and exercise as I did before surgery.

  • abita
    abita Member Posts: 1,135 Member

    Interesting. I wish I had known I could do that 2 years ago. I guess I just trusted that my oncologist would get all this info for me. Maybe because I was diagnosed after being hospitalized by my oncology surgeon I didn't understand that the oncologist doesn't think surgery first. Whereas that is definitely what I would want to do first to get it out and hopefully not have a recurrence.

  • persistance2
    persistance2 Member Posts: 5 Member

    Sorry i wrote my comment incorrectly. they offered a wedge on 1st time when they found it in my lung

  • beaumontdave
    beaumontdave Member Posts: 1,223 Member
    edited June 25 #11

    Welcome, I share the SoCal Kaiser experience, after the initial colectomy on my sigmoid section. After Kaiser's main liver Onc., Dr. Defronzo[ in 2014] did my 2 liver resections spanning a 6 year period, I've been NED since. They looked hard at 'nodes' in my lungs especially when after the second resection, my right lung kept filling with fluid, but nothing malignant came from it all, and I'm nearly 8 years out. One of the regulars here had a recurrence met in her lung and had it ablated, and she just passed her 8 years NED anny., so that avenue is a possibility. I don't know who she was with when it was done, but she may show up to be able to say. I'm sure many places could do such a procedure, even the assembly line at SoCal Kaiser. Good hunting and good fortune in your search and outcome.............................Dave

  • Soundings
    Soundings Member Posts: 14 Member
    edited June 27 #12

    I hope that you are able to get to a cancer center that takes insurance to get a second (and even third) opinion. Sending positive vibes 💙

  • persistance2
    persistance2 Member Posts: 5 Member

    Thx but not likely. i am ok to cash pay even cash pay a different chemo that Kaiser doesn't offer. Why make all this money if you don't get to spend it on extending one's life?