No Evidence of Disease!

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No Evidence of Disease!

by DragonBoater on Thu Apr 04, 2019 11:25 PM

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I had a PET scan on Monday, and according to my oncologist:
"the cancer had great response to chemo to the point that scans can not detect active cancer growth currently"
This is, of course, a dramatic improvement from what she told me 4 months ago:
1. There is no cure for gastric cancer at this stage.
2. Eventually the disease will develop resistance to all available chemotherapy treatments.
3. Surgery will not prevent the spread.
4. On average, her patients with my condition (she specializes in gastric cancer) survive between 6 and 24 months.
(5-year survival rate for patients with stage IV gastric cancer is about 4%)
That prognosis is changed now.  The cancer may be completely gone, or remnants may still be surviving but essentially inactive.  Either way, it's contained, and my goal now is to keep it from coming back.  For at least the past 6 weeks, my body has felt as if the disease was gone.  I've gained back 15 pounds of the 30 I'd lost, and I'm running regularly, (in the 2nd week of my chemo cycles) as much as 6 miles at a time.
When I first got my diagnosis, I researched the nature of my cancer and a great many established and alternative treatments to see what might help.  My goal was simply to extend my time with friends and family as long as possible. Along the way I identified a lot of approaches that appeared to be scams and/or quackery, but I also found promising therapies and theories, with solid preliminary research backing them, suggesting ways I could work to slow or reverse the progress of the disease.
It's impossible for me to know at this point how much each of my therapies has contributed to my improving condition.  My best guess at the main factors:
1. Chemotherapy
2. Artemisinin (extract from a Chinese herb)
3. Curcumin (extract from an Indian spice)
4. Low carb diet
5. Sulforaphane (extract from broccoli)
6. Phytochemically rich foods (like berries, green vegetables, etc.)
7. Lifestyle changes (lots of rest and relaxation, staying positive, avoiding stress)
Cancer Stem Cell Theory is a relatively recent development, that has not gained much attention, but which seems to me to beautifully explain the difficulty in treating advanced cancer.  The theory holds that cancer stem cells are different from most cancerous cells found in tumors.  They survive and develop resistances to chemotherapy, rebuild damaged tumors, and spread throughout the body to create metastasis. 
My oncologist doesn't seem to be aware of CSC theory.  When I emailed her asking her opinion she responded talking about stem cell therapy for cancer, which is unrelated and totally different.  She isn't opposed to my exploring alternative therapies, but I get the feeling Kaiser doesn't allow her to recommend anything other than chemotherapy for my condition and she seems strongly biased in favor of chemotherapy as my only effect treatment option.
I adopted CSC Theory as my operating theory for attacking my disease.  My strategy was to let chemotherapy attack the main cancerous growths in my stomach, lymph nodes and liver, while most of my other therapies targeted the cancer stem cells.  Based on results so far, I may be on the right track with my approach.
Now that my PET scan is showing "no evidence of hypermetabolic disease," my inclination is to discontinue chemotherapy and focus on the CSC Theory based therapies, but my approach to treatment is evolving all the time.  I'll go through at least one more chemo cycle starting next Monday.  I have an appointment scheduled with my oncologist for the same date, where we'll discuss in more detail my current conditions and my next steps forward.
Here’s the full PET scan report if you’re curious:

Impression
No definite evidence of hypermetabolic disease. No residual gastric uptake beyond physiologic levels. Resolution of prior hypermetabolic gastrohepatic node and hypermetabolic liver lesions.

Narrative
FDG PET/CT SCAN SKULL BASE TO MID THIGH

HISTORY :
52-year-old man with metastatic gastric cancer, referred for subsequent treatment strategy.

COMPARISON: PET/CT, 11/19/2018.

TECHNIQUE :

Radiopharmaceutical: 9.76 mCi F-18 Fluorodeoxyglucose (FDG), IV
Injection site: Left antecubital vein
Blood glucose at FDG injection: 80 mg/dl
FDG uptake time: 62 minutes

Low dose noncontrast CT scan (intended primarily for attenuation correction and anatomic localization; not optimized for visceral and vascular evaluation) was acquired from skull base to mid thighs followed by PET emission scanning of the same anatomic region. Reference image numbers provided below correspond to CT image numbers unless otherwise specified.

CTDI: 2.2 mGy; DLP: 199.0 mGy-cm

FINDINGS :
HEAD/NECK:
BRAIN: Minimally visualized and not reliably evaluated.
PARANASAL SINUSES: Clear.
AERODIGESTIVE TRACT: No suspicious FDG-avid lesions.
LYMPHADENOPATHY: No suspicious FDG avid adenopathy.
THYROID: Unremarkable.

CHEST:
LYMPHADENOPATHY: No suspicious FDG avid adenopathy.
LUNGS: No suspicious FDG-avid pulmonary nodules. Atelectasis at the lung bases.
PLEURAL/PERICARDIAL EFFUSION: None.
VASCULATURE: Unremarkable.

ABDOMEN/PELVIS:
LIVER: No FDG-avid lesions. Resolution of prior focally hypermetabolic lesions.
GALLBLADDER: Unremarkable.
SPLEEN: Normal in size and metabolic activity.
PANCREAS: No FDG-avid lesions.
ADRENALS: No FDG-avid lesions.
KIDNEYS/BLADDER: Physiologic FDG excretion. Right renal cyst.
GI TRACT: A prior hypermetabolic proximal gastric metastases appears to have resolved, mild FDG uptake in this region is not beyond physiologic levels (image 148) with SUV max of 2.6, previously 16.3. No focally FDG-avid lesions.
LYMPHADENOPATHY: No suspicious FDG avid adenopathy. The prior metabolic gastrohepatic lymph node has resolved.
VASCULATURE: Normal abdominal aortic diameter (<3 cm). #aaa0
PELVIC ORGANS: No suspicious FDG-avid pelvic lesions.
ASCITES: None.

MUSCULOSKELETAL/SOFT TISSUES:
BONES: No suspicious FDG-avid or destructive osseous lesions.
MUSCLES: No suspicious FDG-avid lesions.

RE: No Evidence of Disease!

by ToddlerFather on Fri Apr 05, 2019 12:21 AM

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Consider adding LDN and/or ALA (Alpha Lipoic Acid) to your toolchest. I've seen in me the good effects of LDN; ALA hasn't made any difference yet, but I'm still adjusting its dosage. 

Note that this would not be in lieu of anything, conventional or alternative. Even in conventional cancer treatment, chemo is weighted in benefits x drawbacks; for instance, my oncologist wasn't recommending any therapy even when LDN hadn't yet made any effect, because to overall balance wouldn't make the side effects worse than the disease. 

So while your MD might not prescribe you LDN, ALA or any other integrative medicine solutions, she might say for you to wait and see. 

RE: No Evidence of Disease!

by DragonBoater on Fri Apr 05, 2019 01:07 AM

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Thanks, TF.

A quick search revealed this research on Alpha Lipoic Acid on the NCBI database:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3542233/

Based on what I just read, I would rank it as potentially helpful, though not one of the most promising alternative treaments out there.  It's definitely something to consider if my cancer makes a comeback.

I couldn't find anything reputable supporting LDN.  It's promoted on some the quack sites that I don't take seriously.  I'll keep an eye out for more information, though.

RE: No Evidence of Disease!

by ToddlerFather on Fri Apr 05, 2019 01:26 AM

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And on Alpha Lipoic Acid, a more recent article is this one:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6142095/

LDN is the only thing that can be said to be working so far (lung metastases of a non-RAI-avid thyroid cancer) for me, so I hope the docs above can provide clearer and more trustworthy information on it. 

RE: No Evidence of Disease!

by DragonBoater on Fri Apr 05, 2019 02:35 AM

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Checking out those sites, they don't meet my ideal for unbiased scientific research.  I see lots of annecdotal cases where patients using it along with other treatments have had remarkable success.

Perhaps it works for many.  Perhaps the other treatments would work with or without the LDN.

Best of luck to you in your treatment.

RE: No Evidence of Disease!

by ToddlerFather on Fri Apr 05, 2019 03:08 AM

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While those associations are moving towards making clinical trials, it's not easy when there is no patentable drug in the end to pay for them. And until standard-of-care testing is made, no doctor will be able to prescribe LDN instead of another treatment; it would be malpractice. It's a catch 22 that will take time to solve, and will probably be resolved first for autoimmune diseases, where the efficacy of LDN is clearer than cancer and other applications. 

That's why the most interesting cases are ones where the conventional knowledge says not to treat it, either because there "is no chance" or because the side effects are worse than the disease (my case at this point). 

And that's why I started suggesting to add it to the toolchest, not to replace any conventional or alternative treatment you are doing. 

I've just uploaded the graph I keep of my tumor marker (Thyroglobulin) over time at:

https://imgur.com/a/2dum5cf

(Y axis is Tg concentration, X axis is number of days since the first measure that should have been zero but wasn't)

So far, it seems it turned an expontential growth curve (which is the standard for cancer) into a decrease trending towards a plateau. 

Will it do the same for you ? No idea. 
Will it keep working for me ? Hope so. 






RE: No Evidence of Disease!

by ToddlerFather on Sun Apr 07, 2019 04:16 PM

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To add to possible treatments to try, there is also DCA:

https://www.dcaguide.org

No experience or referrence, and I'm still working thru ALA dosage so I won't add anything else just yet in order to keep track of what works and what doesn't. 

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