Remission But You Need To Stay on Chemo for Life ~ WHAT???

 

The definition of insanity is doing the same thing over and over again and expecting different results.

That is truly what I feel about Drs these days.  Gone are the days when they truly cared about their patients and healing them.  Don't get me wrong we love our oncology team but most Drs only know what they were taught.  They don't take the time to ask "could there be a better way".  Of course there are exceptions to that, but they are often hard to find or insurance doesn't cover it or...

We started asking that 12 years ago, long before our cancer journeys.  I found a passion for all things natural health related as I shared previously.  Due to that, I knew there were much better ways than the "standard of care", many natural ways that don't take you to the brink of death, have worse side effects and leave lasting issues forever.  

They now have what is called "circulating tumor DNA" tests that are specific to specific cancers, mine was even typed to my cancer specifically and are more accurate than all the scans (which by the way, pump your body full of radiation, which can cause cancer (insanity?))  My ctDNA test on 12/31, came back ZERO - NO cancer in my blood. My NP wanted a PET scan to verify before declaring remission.  So last Thursday (2/6) I had that scan and on Friday I saw the results.  Today our Dr said "remission" BUT we will do chemo every other week for life.  WHAT?

I said No!  He was taken aback and didn't like that.  I said the NP said I could do every 3 weeks and only need today and 3 weeks from now.  He said he told her he didn't agree with that.  I continued to fight back, respectfully!  I understand his point, but he doesn't know I am using alternative treatments and supplementation, which I will maintain for life.  Infact, had this not been pancreatic cancer I never would have done chemo at all.  He did finally agree, that redoing the ctDNA test today (results in approximately a week), providing it is zero again (no doubt in my mind it will be) we can go 3 weeks.  So 3 more weeks we likely will have this discussion again, but I will advocate for myself (as I urge everyone to).

Please know I am still fighting, but continuing my natural regimen, possibly adding in many of the other natural options out there on occasion.  I will remain a survivor.  More importantly, our God is bigger than even cancer and He isn't done with me!

If you want to chat about my regimen (you can see it here) or about any of the other natural options I know of, please reach out!

Cancer Again... WHAT???

Late Summer 2024 I began experiencing pain nearly every time I ate, as time went on, it morphed into acid like heartburn feeling too.  After the year we had in 2023 with Kevin's journey (that also included some major financial things), I assumed due to stress it was an ulcer and tried several natural things to help the acid, which helped temporarily.  On 9/11 I finally decided I needed to go to Urgent Care (as I didn't have a GP, due to being generally healthy).  I told the PA what was going on and that I thought it may be an ulcer, and that I would like to deal with it as naturally as possible.  She felt my stomach (I only had pain when I ate, never on touching), offered an acid blocker med and sent me on my way.  When I looked at my chart, she noted "acid reflux" never telling me this or seeking any kind of testing.

6 days later, I woke up in pain, previously I had only had pain on eating.  We were headed to a follow up appointment 1 1/2 hours away for Kevin that morning.  I was still hurting.  We stopped for lunch, which I ate and then immediately didn't feel well and had to run to the restroom and vomited.  We had one more stop for an errand, during which I was still feeling miserable, so told Kevin we needed to stop at the ER before we headed home.  After labs and a urine test, they said it was gallstones.  I asked how as I do not have a gall bladder (something I wish I never would have done), they said stones are still possible.  Finally, they did a CT scan, the Dr comes in, sits down and says "I hate having to give news like this.  We found a mass on your pancreas and liver".  I was in shock and denial.  I live a healthy life, I have removed most of the toxins from our home and my personal care. My first thoughts were "I live and eat healthy, use good supplements, there is no way this is what is happening".  I spent the next several hours processing this news.  Pancreatic cancer is typically terminal because there are no symptoms and by the time it is found, it has spread and is hard to fight.

Relationships are so important in life and this proved it all again.  Due to Kevin having walked this journey just a year before (see Post here) and having an incredible Oncology team who gave us their personal cell phone numbers, he was able to text his Dr that evening.  Dr was on vacation in Croatia, but responded almost immediately and said "it is cancer until we prove otherwise, we will get her in right away".  I received a call at 8am the next morning, scheduling my appointment the following day, 9/19 with labs. We asked the Dr how long she thought I may have had this and her reply was "18 months or more".  Which means I actually had it before Kevin was diagnosed with his, without a single symptom.  Which just solidified how blessed we were to have just walked this with Kevin in order to get my treatment very quickly.

In order to truly get a diagnosis, I had to get a bunch of testing.  On 9/23 I had a PET Scan, on 9/24 I had a ERCP scope/biopsy.  During the ERCP/EUS they were unable to get a good enough pancreas biopsy and no liver biopsy at all due to inflammation and bleeding but assumed that liver spot was scar tissue based on what the Dr saw. 9/25 was back to Oncology with more blood work and results of PET (Pancreas lit up, Liver didn't).  At this appointment we were told "it is curable with surgery and chemo".  On 9/29 I was scheduled for an MRI, after many IV's and people touching, poking and prodding, then being strapped to the table in an extremely narrow MRI tube, I had my first ever panic attack and couldn't complete it.  It was rescheduled for 10/1, at a different location, as it was needed to get an accurate idea of the liver involvement, it did indeed show it had spread to the liver, making it stage 4, which changed the prognosis from curable to incurable, but treatable and remission possible within 6 cycles of treatment (essentially 6 months).  Next was genetic testing to determine if this was genetic (Pancreatic, Ovarian, Prostate, Breast and Thyroid cancers are in the same genetic line).  All of this was so much to process, but our faith is strong and we know God has a plan for everything, even this and we trust His will fully!

On 10/10 I had a port installed and 10/15 started my first chemo infusion.  The plan at this time was 3 weeks on 1 week off for treatment with a strong chemo cocktail, but my body had other plans.

I am going to back up just a bit, when Kevin was diagnosed, I did a ton of research on natural ways to treat cancer.  So, I knew I was going to take this route, infact we had had a conversation in July, and I said, "If I ever have to deal with this, I will not do chemo".  With this diagnosis being Pancreatic cancer, I felt like I had no choice as my children are young adults and I have young grandchildren.  I have too much to live for!  I decided I was doing both.  I started taking Iver mec tin and Fen ben dazole (words intentionally separated to avoid being flaged) as well as some other supplements to support liver and inflammation.  I will share my protocol and links to purchase what I have been using below.

Though my health and wellness journey I have learned to advocate for myself and my family. I was very upfront and told the Dr I would be using these, infact started on them immediately and got approval for all my supplements as well.  She said, "there isn't enough info, but I know people doing ok with it".  Know that many Dr's will have issues with this, but you need to do what is right for you, your family and your situation, even if that means finding a new Dr.

My first infusion was 10/15, I struggled a bit with the Abraxane, they had to stop and give me Benadryl to calm things down, then it was easy going.  I had my second infusion 10/22, come 10/29 my Neutrophils and White Blood Cells dropped too low, so they opted to go to 2 weeks on 1 week off.  So, I had the week off.  On 10/29 I started to lose my hair.  This was the hardest thing of all for me.  I have been a hairdresser for 26 years and hair is a big deal in my world. On 11/5 I had infusion #3, the following week, my numbers were again too low, so they decided we would do week on, week off.

12/13 I had my first CT scan to check progress - it showed minor shrinkage on a couple of tumors, but was classified as "stable"

There are a couple of very specific blood tests for pancreatic cancer, one called CA19-9.  Normal is 35 or under.  My first one on 9/19 was 1795, 10/2 was 3014, 10/15 2889, 12/17 136 a 95% decrease and 1/21 59.  2/11 56.  I will have another on 4/25 and will update here with those results.

The second is called circulating tumor DNA test.  This test is being done for many cancers and is the test used to tell us Kevin was all clear.  It is more accurate than a scan as it shows whether or not there is any cancer cells circulating in the blood.  My test is called a "Signatera" they type my cancer cells so the test is specific to me and my cancer.  This was done 10/15 and was 2.21, on 11/19 was .83 and on 12/31 was ZERO.  Just 3 1/2 months since diagnosis.

This was after only 7 infusions, but with all the alternative treatments I have chosen to do.

As of 2/6 I had a PET scan to verify the Signatera results.  The results stated "No pathological uptake in the region of the pancreas" which means there is no active cancer cells.

We were both blessed to have minimal side effects due to getting the nutrients our bodies needed through supplementation!

It is our goal in sharing our stories to help people by sharing what has worked for us (and many others as well).

Here is my protocol:

Designer drink first thing (These are ones I sell (Nootropic (brain health), Minerals, Energy all unflavored so can mix into favorite beverage) www.blessednhealthy.com

Around 9:30-10am:

Pectasol C (or MCP) ~ 6/day on empty stomach ~ This is a binder that is important to take when taking FenBen or Iver to carry the dead cells/parasites out of your body.

WITH Food:

FenBen ~ 4/day (M-Sa, ***Must take with fat***) 1332mg total (worked up to this dose) 444mg Increase dose every 7-10 days (Must take a liver support as this can raise liver labs.  I use Milk Thistle, linked below) (PM or contact me for another source)

****NOTE ~ STOP Fenben 48 hours before a PET scan (ok to continue for just a CT)****

Ivermectin ~ (daily) 72mg (1mg/kg) – worked up to this dose as well.  There are many sources of this, most easily you can get it at your local Vet Supply (yes, it is sold for animals) or offshore via alldaychemist.com or righttotry.bz (Contact me for another source)

How to start and work up to full dose; 

Example:

High Dose: Week 1 ~ 1mg/kg body weight/day; Week 2 ~ 1.5mg/kg/day; Week 3 and beyond 2mg/kg/day

Atermisinin ~ 1/day (6-12 months) 900mg 

Milk Thistle ~ 1/day 111.1mg (with Dandelion 12.5mg) ***Don’t use if cancer is hormone driven. Use Tudca instead.

Black Cumin Seed Oil 1/day 1000mg 

Telomere ~ 4/day

Turmeric ~ 1/day

Turkey Tail ~ 6/day

Soursop tincture and have been occasionally drinking the tea

Multi Vitamin and Immune Support patches (as well as other options)

CBD patches as needed

Sweet Dreams sleep strip

I also have access to Hyperbaric Oxygen Therapy.  My goal is 3x per week but haven't been able to get there regularly yet.

A few resources you can do your own research on are below:

Dr. William Makis on X, YouTube and Substack is a great resource for all the success stories with these off label uses.

Joe Tippens is one of the first I had heard of who used these off label meds with great success.

Here are a couple Facebook group I have been following where I have done some research – take it with a grain of salt as EVERYONE has their own opinions and not everything there is positive.  (4) Fenbendazole And Other Alternate Choices   There are some others I found too, but I like this one the best.  Here is another one I use too Fenbendazole - Cancer Support Group

I will continue this protocol for life, just altering some of the doses as a preventative measure.

***Updates will be made to this post as I learn more.  I am continually researching for my own info and am happy to share what I find in order to help others!***

****NOTE ~ I am not a Dr and this is NOT medical advice.  This is what I researched and chose to implement.  Please do your own research and do what is best for YOU and your situation****

Cancer

In early 2023, Kevin had a fever, then noticed a lymph node swelling.  He didn't think much of it, but a couple months later, it was still swollen and pretty large.  He finally told me about it and I made an appointment with an ENT dr to get it checked out.

The appointment was 2 months away.  When the day finally came, we were in the office and the Dr comes in.  He introduces himself and takes a look, feels the lymph node and says "I don't know what it is, but it is usually cancer".  Just like that.  We have never met this man, are sitting there, with our almost 1 year old granddaughter on my lap and this Dr. drops the "C" word.  We are sitting there in shock.  So he refuses to biopsy without an ultrasound, which makes sense as there are a lot of veins and such in the neck.  We push to get it done (as the dr is 1 hour 15 minutes away from us), so they make a call and can get us in immediately about 20 minutes away.  We rush over, get the ultrasound, then rush back to the Dr for the biopsy.  This was the Thursday before Memorial Day weekend.  So we anxiously await the results.  Finally the call comes in on Tuesday.  It is cancer.  Officially diagnosed as Squamous Cell Carcinoma.  They then tell us, you should get a call by Friday to schedule a PET scan, if you don't call us.  No call comes, so on Friday (6/2) we call and are told the first available appointment is not until 6/19.  We again are shocked at this.  Being in health and wellness and the knowledge we have gained, we have learned one of the most important things in your health journey is to advocate for yourself.  Sometimes that means, making your own appointments.  We found a place in the next town that could get us in on 6/8.  Upon recommendations from some friends we made an appointment with an Oncologist as well as a 2nd appointment with another facility.

We walked into the first office, Beacon Clinic, and found it warm and welcoming.  We had a great meeting with the Dr and his NP.  He shared the PET results (which the ENT still hadn't called us with) telling us this is Squamous Cell Carcinoma, Head and Neck Cancer.  This cancer is what the call P16+, coming from the HPV virus - so nothing he did or didn't do to "get cancer".  This Dr shared that they had another Dr in their other office in Post Falls was involved in a current immunotherapy trial for this cancer.  WOW ~ divine timing.  We asked about the supplements we use and were told absolutely you can and should keep using them.  Our 2nd opinion appointment was that afternoon, so we headed over there.  Night and Day difference just walking in the door, very cold and sterile and definitely not a welcoming atmosphere and that just continued through the appointment.  When we asked the Dr about supplements she said "absolutely not, you can ONLY follow this specific plan".  We knew right then, this place wouldn't be an option.

We scheduled an appointment with the trial Dr and again were incredibly impressed with the facility and staff.  We got the info and decided to pursue the trial avenue.  There was lots of testing involved (things like hearing, dentist, etc.) to get a starting point and keep an eye on things the immunotherapy could affect.  Over the next 2 months we jumped through all those hoops and get the testing.  Then came the "randomization".  With a cancer trial you can't do a placebo, so it is what they call "standard of care" which is chemotherapy and radiation OR the trial drug.  From the beginning we were told you can pull out at any time.  So when he was randomized we got the call that he fell into the "standard of care" arm of the trial.  They called us into the office and the Dr walks in and says "You are out of the trial.  You are too young and too good looking to just do standard of care, so we will get you this immunotherapy drug."  They had a grant to get the drug from free since it is being trialed for this cancer (it is approved for 17 other cancers at this time) and insurance wouldn't cover it.  He was approved for 12 doses of the medication.  So finally on 8/2 he got his first dose of the Immunotherapy.

We were told he would get 2 doses every 3 weeks.  We had some things on our schedule that we were concerned about being able to still do, so the dr moved it to 3 doses every 3 weeks.  Thankfully he had zero issues with the immunotherapy meds.

THEN the bomb dropped.  With the overwhelm of a cancer diagnosis and all the info we were trying to take in and things moving so fast, we were not aware that the Dr still planned to do a regimen of chemo and radiation.  So, in total shock as this is dropped on us, we try to process.  He is to do 5 doses of chemo, 1 per week and 30 radiation treatments.

Chemo and daily radiation started on a Tuesday.  On Thursday, his blood sugar which had been pretty stable DOUBLED to over 300.  Which makes him feel sick, and very tired.  I quickly do some research and discover that the steroid they give in "premeds".  That was a long weekend!  Once we talked to the Dr and dropped the dose down, it was much better.  Radiation was another beast.  They wanted to do 30 treatments, daily Monday - Friday (an hour and 15-minute drive for a 15-minute appointment).  We talked to the radiation Dr and were able to cut that down by doing 2 treatments on Fridays, one at 8am and another at 2:30pm (there has to be a set number of hours between).  We were gifted a hotel grant for 5 nights in a local hotel, so spent Thursdays close to the Dr, making Fridays easier.  We also advocated for just radiating where the cancer was instead of the "preventative" all around on both sides.

Radiation was the most challenging for a couple of reasons, they strap you to a table to hold you still, so for head and neck cancer, they make a mask to strap your head to the table to keep it still AND radiation literally is cooking you.  So as a result, midway through, he got huge burns in his mouth and throat making it hard to eat or drink anything.  We worked hard to focus on making protein a priority to maintain muscle health.  He did end up losing around 25lbs in about 2 1/2 weeks and did have to get IV fluids a few times.

All in all he did really well throughout his treatment and we attribute that to our supplements providing the nutrition he wasn't fully able to get through foods.

Once chemo and radiation was finished, he continued with immunotherapy until the end of May.  The end of December he took a blood test called a NavDX which is a circulating tumor DNA and is a more accurate indicator of cancer than all the scans.  This test came back NEGATIVE!  Meaning he was cancer free!!!  On May 22nd he has the last immunotherapy treatment and was able to ring the bell!

One benefit through all of this is that he is no longer diabetic and off all the diabetes meds!

This is a journey we don't wish on anyone, but is becoming more and more frequent, an epidemic really due to so many things happening in our world.

Life Changing Products

I mentioned in my first post "Health and Wellness Journey" that I found a new company in 2016, and that we relaunched in 2020.  One of the things that will change everything is a quality product.  How do you know the difference?  I felt the difference when I started using good supplements.

As I mentioned, in 2013 I was 112lbs overweight.  I was only looking for weight loss but I found so much more.  I started with a vitamin, sleep formula and the weight loss product.  I waited a few days to get everything in order before I started the weight product but started right away on the vitamin and sleep formula.  That was the first day in longer than I can even remember that I didn't need my 2-hour nap that afternoon.  I am not exaggerating, I literally took a 2 hour nap every single day because I couldn't keep my eyes open, because I couldn't sleep well.  Once I started sleeping well and supporting my body with a good vitamin, it all changed!

I started the weight loss program and lost the weight, quickly.  I started learning about supplementation and what can happen when we give our bodies the nutrients they need.  I found a passion for learning all the things about supplements, nutrition and all things health.

Then I had an opportunity to join a ground floor company launching in 2016 with incredible leadership full of integrity, a phenomenal manufacturing facility and fantastic products!  This company had liquids, powders and some capsules which were great and gave great results.  THEN it all changed in 2020 with a new technology that was easy to use and provided great results and living up the meaning of our name, Innov8tive!  We have grown, added other innov8tive products

Because the results were so amazing, Kevin finally jumped on board and started getting his own results and joined me in my passion for sharing and helping others.

We are truly blessed!

 Homemade Remineralizing Toothpaste

Equipment

• Glass or ceramic bowl

• Wooden mixing spoon

• Non-metal measuring cups & spoons

Ingredients

    4 Tbsp Bentonite Clay                                1 tsp Calcium Carbonate

    1 tsp Lakanto Monkfruit                              1/2 tsp Baking Soda

    1/2 tsp Salt                                                 4 Tbsp Coconut Oil

    1-2 Tbsp Hot Water                                    8 drops Cinnamon Leaf Essential Oil

Instructions

• Combine all the dry powders in a bowl or jar.  Remove any clumps

• Add Coconut oil.  Mix until paste forms

• Add Hot water 1 T at a time, stirring well until a thickish paste that resembles toothpaste.

• Add Essential Oil, stir well to incorporate.

NOTES:

• When using Bentonite Clay, you want to avoid contact with metal bowls and spoons.  This specific clay has the ability to bind to heavy metals and draw them out of our bodies.  If it interacts with a metal bowl or something similar, the effectiveness may decrease.

• This has a bit of an earthy flavor, so may take some adjustment, but my teeth feel so much cleaner and there is a whole lot less scraping at the dentist!

Removing Toxins

Starting to feel better sent me on a journey to rid my life of the toxic products in our home.

I started with laundry detergent and some household products that were all natural.  Slowly moving into self-care products.

That has grown into anything with fragrance such as candles, paraffin based wax melts, sprays, bathroom spray, fabric sprays, dryer sheets, etc... are all filled with toxic ingredients and even endocrine disrupters.

That morphed into our foods, filled with starches, sugars, seed oils, coloring, so called natural flavors and more.  I make most of our condiments and sauces, I cook from scratch with whole foods (foods that are ingredients, not that have ingredients).

I started using Norwex face and body cloths instead of toxic body wash, natural moisturizer and toner.  I make my own remineralizing toothpaste and replaced my plastic toothbrush with ones made from bamboo and charcoal.

I am working on replacing plastics in our home (this is seriously daunting as plastic is so convenient, but leaches microplastics into your body, that sit and cause health issues.

Don't get overwhelmed, start with one thing at a time and make better choices.  

You and your family are worth it.

A Diabetes Diagnosis at 40

The first step in my journey was making food changes.  This actually began before my personal journey when Kevin was diagnosed with Diabetes.

After a back injury and life, Kevin also put on weight.  We were on a path to destruction.

When he recieved his diagnosis, we took a nutrition class and I started making changes in our diet.  Moving from regular pastas and breads to whole wheat (as this was one of the things they said we should do).  I also got rid of the "junk", bought natural sweeteners and started researching diabetic recipes.

As I mentioned previously, I am a researcher, so I dove into learning about diabetes and how to get healthy.

Little did I know at the time that NOTHING they teach in the diabetes nutrition classes are actually what a diabetic should do.

Not long ago I found the shopping list they gave us and they are all things that they taught that are healthy, however all things that are grains, starches, natural sugars, etc... that WILL raise your blood sugar when you eat them and cause inflammation which is the root of all diseases and disorders.  Definitely NOT the diet you should consume as a diabetic.

What I have since learned is a well formulated Keto diet (believe it or not there is A LOT of bad Keto diet information out there and most is not actually healthy) will reverse not only diabetes, but many other health issues as well.

In 2016 I jumped into living a Keto lifestyle and ever since I have learned even more about what your body needs to function as it was created to!

First, Keto is NOT high fat.  Second ingredients matter (hint; if it says Keto on the package it really isn't).  I would love to share more with you about the resources I use and how easy it is to live a Keto lifestyle!

Here are a few of my favorites that have helped me:

Cookbooks by Maria Emmerich.  This is a great starter book, though she has many more, let me know if you need a suggestion.

Lakanto Monkfruit sweeteners (not all Lakanto products are keto, please read the ingredients)

Sweet Leaf Stevia drops.  There are many flavors to choose from.

Most important however are just whole foods - foods that are ingredients, not foods that "have" ingredients.

If I can help you get started on the path to better choices, better health please reach out!