What I’ve been doing…

 

**For those wanting to know what I did to achieve No Evidence of disease, this is a long post but everything I did, the off label meds, supplements, therapies, are all in bold in this post so they are easy to scan through and find. Please remember that these meds/supplements at these dosages worked for *my* cancer and yours might need different dosages or meds/supplements.**

It has been far too long since I last sat down to write in this blog. So much has happened during that time. I meant to sit down and write so many times but life has been, well, life! Most of you reading this follow me on FB so this comes as no surprise to you but some of you may not know. August of last year (’17), I felt a lump in my breast, next to my implant. I hoped and prayed it was just scar tissue but test after test finally led to a diagnosis.

In November, I finally received the results; the cancer was back. It wasn’t just in my chest. No, there were 3 tumors along my mastectomy line, it was in lymph nodes and had metastasized to my liver (still ER/HER2+). I read my results and felt like someone punched me in the gut. I felt my throat close up and my spirit was crushed.

Up until this point, “stage IV” was never confirmed and, we thought, was ruled out. Looking back, I think my first blood biopsy (’16) showed the beginning of metastasis but I trusted my Oncologist and Naturopathic Oncologist that I was probably just fine. I trusted them that I didn’t need any follow up PET scans after I completed my Herceptin (HER2 antibody) treatment. In my gut, I wanted to demand more but my mind wanted to trust them and pretend it was all ok.  I could be angry….at my Dr.’s for failing me, at the system for failing me, at God for allowing this to happen, but was not. In fact, I believe that God allowed this “terminal” diagnosis because He know I wouldn’t sit idly by and die at the hands of “standard of care” treatment. He knew I would research, think WAY out of the box, and fight for my life.

The morning I called to schedule my MRI (which led to u/s, PET/CT scans, bone scans, and liver biopsy), I fought back tears and choked out my words as I schedule my scan. In my heart, I think I knew it was back. I had no idea it was stage IV but I somehow knew; just like I knew with my first diagnosis. I hung up the phone and ugly cried at the thought of my family going through the cancer rodeo again…not so much me but for my children, husband, parents, siblings, etc. With tears streaming down my cheeks, I closed out the calendar on my laptop and there behind it was my browser, open to Facebook. There, staring in front of me was a post from a woman named Jane who was celebrating her cancerversary. She had been diagnosed with terminal cervical cancer and a few years later terminal AML…and here she was, over a decade later, posting that she has been and still is free from cancer, thanks to treating her cancer as a metabolic disease. My jaw dropped and I felt God speak to my heart and say, “follow her…..this is your answer…you will be ok….trust me.” I was overcome with a sense of peace and immediately began to search this woman’s group. Truth be told, I don’t even remember how I found her group or how I joined. I just knew I had to find out what she did.

In Jane’s FB group, she recommended a clinic (Care Oncology Clinic) based in London that was using repurposed medicines to treat cancer metabolically with far better outcomes than “standard of care” treatments offered. I knew I needed to contact them so I did. It didn’t take long for me to hear back from them that they had JUST opened a sister clinic in South Dakota, of all places. PERFECT! Traveling to SD would be far easier, and less expensive than traveling to London (although certainly not as glamorous a destination). To my surprise, I could do all my appointments via video chats….I didn’t even have to travel!

Of course, during that time there were so many tests, Dr. appointments, and planning on how to conventionally treat this beast. My oncologist was recommending Kadcyla, the “best” med on the market for my type of cancer (ER/HER2+); it was a combo of chemo and Herceptin which had the best length of progression free survival of any of the med combos. However, it also comes with some nasty side effects and would affect my quality of life and probably my heart function again. Intuitively, I had a bad feeling about it and informed my oncologist I would like to know what every option available was. Thankfully, my oncologist respects me and knows I am a researcher and need ALL the facts before making a decision so she printed out the “doctor” version of every single med option available rather than what she joked as the “dumbed down” patient version…haha!

I did so much research about all my options…..SO. MUCH. RESEARCH! I wasn’t ready to buck “the system” completely and only do alternative treatments. I had a feeling I needed both conventional treatments and alternative together. I was offered a very uncommon but usually very successful alternative treatment but it was expensive and it is something I really can’t discuss because well, let’s just say the people in the US who were studying it are all dead or missing. That sort of thing. I could feel God telling me I needed to SHARE my journey PUBLICLY and I wouldn’t be able to do that using this treatment. I was happy to know it was always available to me if the other stuff didn’t work. The only thing I will say on the treatment is it includes something called “GcMAF” but it’s virtually impossible to obtain it here in the US.

Since I didn’t feel God wanted me to do that specific treatment and the conventional route alone ensured I only had a 20% chance of surviving 5 years, I decided to pursue the Care Oncology Clinic that Jane suggested in her FB group and treat my cancer metabolically alongside “conventional” treatments. I was able to obtain information on the 4 “repurposed” meds they prescribe and to make a long story a bit shorter, I had a video appointment with them and was very pleased with my appointment. They said they could write my prescriptions or if my Oncologist or GP were willing to, I could have them do the prescriptions. Thankfully, although my oncologist was extremely skeptical of the “metabolic” approach, she was willing and did write the prescriptions after her pharmacist confirmed there were no interactions with the meds I was choosing.

During this time, I also went to Bastyr Center for Natural Health in Seattle to be seen by Dr. Standish, one of the most highly regarded Naturopathic Oncologists in the nation. I brought along a list of possible conventional meds and the Care Oncology information. Dr. Standish had never heard of Care Oncology but was intrigued and ended up having her team contact them for information about the medications prescribed and their results. At that appointment, I expressed a desire to have another blood biopsy (liquid biopsy) drawn and she “just happened” to have biopsy kits available from Guardant Health so I ended up being one of her first patients to have the blood biopsy drawn (totally God’s timing).

I decided to hold off on starting the conventional treatment until the blood biopsy results were read. The blood biopsy measures the amount of circulating tumor and stem cells in my blood and then finds over-expressions or genetic mutations in those cells. With that information, they can recommend drugs/therapies that would target those specific over-expressions/genetic mutations. This is NOT yet standard of care but it SHOULD be. When I went back to Dr. Standish to go over my results, they showed that I certainly had an over expression of HER2/NEU as well as more mild over expressions of EGFR and PI3K. She was also very supportive of trying the Care Oncology medications after having read their study results and talking to their team!

I decided to start Herceptin (to target the HER2/NEU) and chose Xeloda (capecitabine) as my chemotherapy along with the Care Oncology meds. I had read many reports of liver tumors responding fairly well to Xeloda and it seemed to have fewer side effects than the other meds and I instinctively felt it was the right choice for me. My oncologist supported my decision but did caution me that statistically, it offered one of the shortest progression free spans but did offer a better quality of life than the other meds. I had also had another CT scan which this time showed “innumerable” liver mets and as far as I understood (and I still need to ask for clarification) I thought I had only had 2 liver mets just 2 months prior. However, I feel this just goes to show that biopsies can cause the cancer to spread (I’d had a liver biopsy between the 1st and 2nd scan to confirm liver mets).

I started the Care Oncology meds, which (for me) consisted of: 

-Metformin- 500mg 2/day

Atorvastatin- 80mg 1x/day

Doxycycline- 100mg 1x/day for one month then alternate with Mebendezole.

Mebendezole- 100mg 1x/day for one month then alternate with Doxycyline

** I also must point out that this worked for me and my specific cancer with my specific mutations. My dosage of all my various meds/supplements will not necessarily work for another cancer patient so I encourage you to seek medical advice from the Care Oncology Clinic  and read Jane’s book to ensure you receive the proper dosages, appropriate for YOUR cancer. Some patients take a different statin, some take far higher doses than I do. **

**My oncologist prescribed all these and insurance covered all but Mebendezole so I pay about $50 out of pocket to have a local compounding/specialty pharmacy make it. You can do a google search for a compounding pharmacy near you.

I also added (at the suggestion of Dr. Standish):

6g Turkey Tail Mushroom Supplements (I took turkey tail faithfully during my 1st round of cancer)

2-4 capsule of Curcumin (I was prescribed 8 capsules but couldn’t get that many down)

At the suggestion of one of my other naturopaths:

1/4 cup Bravo yogurt every day (wonderful probiotics and contains some GcMAF) I have purchased it here  and here

I switched my diet to a low GI, Mediterranean style diet (easy info to google) with organic/non-gmo ingredients. 

I was also gifted powdered mushroom supplements from Four Sigmatic and I add 1 Tbs. of those into my daily morning shake that I make with Vega Chocolate Protein & Greens powder, Green Zone Chocolate Powder, and Blue Green Algae 

Unfortunately, at the end of my first round of chemo, I became incredibly sick. I had uncontrollable diarrhea and horrendous GI/abdominal pain that wouldn’t quite. I ended up in the ER early Friday morning for fluids as I wasn’t able to keep anything in my body. I saw my oncologist who prescribed a plethora of meds, some of which I couldn’t keep down and just threw up. I was in so much pain that even drinking water burned the whole way through my GI system. I called Dr. Standish and she suggested straight aloe juice, slippery elm bark (Throat coat tea) and Glutamine as we realized I had systemic mucositis. I had sores in my mouth and my mucus lining in my entire GI system was gone.

God knew this was going to happen and had essentially urged my MIL to ask if they could come up to help that week so thankfully, they were here to help with the kids and watch the kids while we were in the ER, while my husband had Navy Drill that weekend, and at many dr appts. I was so dehydrated that my electrolytes were severely out of balance. I went in Monday afternoon for more IV fluids and they realized my potassium was so low that they prescribed potassium pills for me to pick up asap and start taking and to come back the next day for IV potassium. Y’all….my resting heart rate was 120 and I have a history of heart failure due to Herceptin. That could have ended VERY VERY VERY BADLY.

My Oncologist realized they’d prescribed the maximum dose of Xeloda because I was young and they thought I could handle it. However, she realized that her only patients who had trouble with Xeloda all had liver mets. Needless to say, I ended up taking an extended break from the Xeloda; 2 weeks off instead of 1. Thankfully, the aloe, glutamine, and herbs helped my GI system heal in about 4 days instead of the normal 14. I lost about 10+ lbs in those 5 days and was grateful to be able to eat and drink again without excruciating pain.

For my next round of chemo, I mistakenly took WAY TOO LOW of a dose. I had already ordered my crazy high dose and had it delivered when we decided to take a break and then realized my dose was way to high. The nurse called and told me how many pills to take and I misheard her and ended up taking a crazy LOW dose. I felt amazing that round. When I went back to my oncologist, we realized my mistake and she was seriously concerned. She didn’t say it but I could tell she was sure my cancer would spread with such a low dose. They check 4 tumor markers every visit and my Oncologist was super surprised when we got those results a few days later and the tumor markers continued to drop! My 3rd Xeloda round I took the lowest recommended dose, or perhaps a little less…I honestly can’t remember?

At the end of this third round I had a follow up CT scan in April that, despite my crazy low and then moderately low doses of chemo following the high dose, showed no evidence of disease in my chest (formerly 3 tumors along my mastectomy line and multiple lymph nodes diseased) and only TWO remaining liver mets (formerly “innumerable”) that were the main two and both had shrunk in HALF! WOW!!!! My oncologist was SHOCKED and I was giddy with excitement! My oncologist of course said I was having a great response to chemo and Herceptin but I knew my metabolic approach had just as much, if not more to do with it!

Around this time, I ordered and read a great book called Tripping Over the Truth, in which the author (whom I didn’t realize I “met” during my video meetings with Care Oncology Clinic) explains the metabolic theory of cancer. It’s a great book, an easy read…it reads like a novel.

I continued with a low dose of chemo and dropped it again when it started to cause GI problems at the end of each round as well as hand/foot syndrome. My oncologist warned me that by dropping the dosage again, statistically, my cancer would likely stop responding to this chemo faster (that’s basically what metastatic cancer does…It may respond to a treatment for a time but eventually it stops responding and grows again).  I also continued my COC meds, supplements above, and glutamine twice a day as needed when my GI flared (little did I know this repeated use of glutamine would actually do more harm than good).

In May, I started weekly Hyperbaric Oxygen Therapy (HBOT) and IV Ozone therapies with another Naturopath about 35 minutes away (rather than having to travel to Seattle).  I also started a fairly strict Ketogenic Diet and water fasted for 3-5 days in between chemo rounds for 3 or 4 rounds. I thought for sure that my CT scan in July would show us no evidence of disease, considering how much regression the scan in April showed and adding all these therapies and diet change!

In June, an echocardiogram (I have them every 2 months since Herceptin caused heart failure in me 2 years ago) showed my heart function had dropped from 60% down to 50%. Anything under 50% was considered borderline heart failure and I’d need to go on protective heart meds (that make me feel like junk) and if it continued, I’d have to stop Herceptin. I had discussed this possibility with Dr. Standish (Naturopathic oncologist) and she suggested taking hawthorne berry extract to protect my heart and I asked about taking an aspirin which she replied was “a no brainer.”   My other naturopath recommended Fruit Anthocyanins, which I purchased at her clinic. I began taking the berry and fruit extracts immediately but didn’t take the aspirin quite yet. 

With July came another CT scan, but I didn’t achieve the results I was hoping for. There was no evidence of new disease, there was still no evidence for cancer in my chest, but the two stubborn liver mets were still there. Albeit one was stable at like, 3mm and the other shrunk from 1.3 to 1.2 cm. My oncologist was super happy b/c she explained many times even though the primary and current mets may be responding, often the cancer pops up elsewhere and they play “whack-a-mole” trying to snuff out new spots. Despite this, I was quite disappointed and felt a bit defeated. Here I had added in two weekly treatments AND changed my diet AND water fasted……and all I got was .1cm shrinkage?!?!

Remember Jane? My lovely inspiration who beat terminal cervical cancer and AML? Well, she wrote an AMAZING book about HER cancer journey and how she beat those TWO beasts! I’d order it from her and it was sitting on my table. I read most of it but had stopped short of the nitty gritty…..WHAT she did/took. I chatted with her a bit and she suggested my cancer may use GLUTAMINE and FATS as fuel if they were starved of GLUCOSE and that perhaps my Keto diet and glutamine supplementation were fueling my cancer while I was doing the weekly treatments. I dove back into her book to check out her “metro map”…..showing how her cancer used glucose, glutamine, and fats and that there are multiple pathways for each of those. However, she lists multiple supplements/meds that BLOCK each of those pathways (and cites scientific studies) so I sat down and decided to stop Keto and return to the low GI, Mediterranean diet, stop taking Glutamine,  and add the following to my regimen:  enteric coated aspirin (81mg 1x/day),  Berberine (500mg 2x/day), Resveratrol (250mg 2x/day), ALA (200mg1x/day), Hydroxycitric Acid (2x/day), drink 2-3 cups organic green tea (full of ECGC), 1-2Tbs flax seed meal in my shake or bravo yogurt.   I also had my naturopath prescribe Low Dose Naltrexone (4mg/day) and Dipyridamole (100mg 1x/day), both of which I had made at my local compounding pharmacy. I also combined some IV vitamin C therapy with my doxycycline round  as the combo of both are extremely effective against circulating tumor cells and circulating stem cells

To understand WHY I chose these supplements/meds, please, PLEASE purchase and read Jane’s book, How To Starve Cancer! She explains each metabolic pathway the cancer may use and which meds/supplements block those pathways. Reading her book, I realized I left a number of pathways wide open and these additions helped me block every single pathway. 

I made these changes and continued to ask God to show me if I needed to do anything else and he just gave me such peace. The next couple months were mostly uneventful, apart from my hand/foot syndrome and GI symptoms flaring at the end of every round of Xeloda (I dropped down to 1500mg am/1000mg pm and then down to 1000mg am&pm). In September though my next Echocardiogram showed IMPROVED heart function!!! It was back to 55-60%!!! The fruit/berry extracts and perhaps the aspirin must be helping!

As the end of October neared and another scan was coming up, I requested a PET/CT instead of a simple CT. My doctor said she’s put one in but wasn’t sure insurance would cover it; thankfully they did! I went into that scan with total peace but also mentally prepared for another “disappointing” scan….either growth or “just” stability.

I also saw Dr. Standish again and we discussed doing another blood biopsy to see if there were still a lot of circulating tumor & stem cells and if they’d changed at all. We also discussed detoxing my body from heavy metals as I feel I probably have some stored up from exposure from places we’ve lived and multiple MRI’s with contrast. We do have a tentative game plan to start a gentle heavy metal detox using sweat therapy and I have a blood biopsy scheduled for Nov. 28th.

Much to my surprise and my joy, my PET results showed NO EVIDENCE FOR DISEASE in my chest (still) AND my liver….those two pesky liver mets were GONE!!! It did show a cyst on one of my ovaries but I have cysts that come and go on them with nearly every scan) and a mild PET uptake near that cyst that they recommended an ultrasound of just to be safe. My oncologist is not concerned and said if I didn’t have cancer, they wouldn’t think anything of it & would assume it was inflammation but she did request the u/s just to be thorough. I’m not concerned and the u/s will hopefully just confirm it is nothing.

I’m still in shock, to be honest. It’s quite surreal to go from terminal to NED! I’ll feel even better when the U/S is over and we get my blood biopsy results back! If those are both clear or the blood biopsy shows significantly reduced CTC, I’ll discuss stopping chemo in the near future and perhaps Herceptin a while after that? I’m not sure if/when/how I would stop or taper any of my metabolic meds/supplements. There really aren’t any “standards” for what to do b/c well, metastatic disease normally ends in death….there is no stopping of meds until the body expires. But clearly, that doesn’t have to be the case. In addition to myself and Jane’s success stories, there are many more in Jane’s group!

I forgot to add that I use essential oils almost daily, personally I love frankincense, rosemary, tea tree, copieba, and immune blends. I apply them topically and diffuse them. I’ve also read the benefits of melatonin, boswellia resin/supplements, and a few other things but have yet to implement them routinely.

I hope and pray that this information is helpful to many. I encourage you to BE YOUR OWN ADVOCATE or find a friend/family member to help you advocate for yourself. Any words in this blog that are in blue contain a link to that product or to studies/articles showing why it’s beneficial. Having a support system, supportive doctors,  walking even just 15 minutes a day briskly after meals, letting go of past hurts (addressing mental/emotional health is imperative), reducing stress, reducing exposure to EMF (don’t keep cell phones near your beds), and so much more!!!! This though focused on the physical aspect of my treatment but please DON’T discount the other aspects as well!

A year ago, I was diagnosed with metastatic, terminal cancer and God covered me with peace and told me he was going to use me. Today, I can look back at this journey and realize he was right and what seems like the end, is often the beginning. I give all the praise and glory to God for showing me this path and allowing me to share it with YOU! 

cropped-651330_11.jpg

It is no accident that you have come across this blog. I know how to heal from a physical terminal disease but more importantly I know how to heal from a spiritual terminal disease and want to share that with you as well. 

There is one, amazing God who created this world and everything in it. Adam and Eve, the first two humans, were deceived by satan and sin entered the world, separating us from a perfect God. Humans offered blood sacrifices to atone for their sins but God knew those weren’t enough so he sent his son, Jesus Christ, fully God & fully human,  to live, be brutally beaten, and die as the ultimate perfect, pure, sacrifice. One day that son will return, reclaim this world and restore the heaven & earth and those who **trust in Jesus Christ alone as the perfect sacrifice** will spend eternity with God. 

Friends, may you be richly blessed today. Know that there is One God who loves you deeply and wants what is GOOD for you and me. May this knowledge lead you to healing both physically and spiritually!!!

Shalom and Hesed to all who read this,

Cheryse

 

**The Content of this blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website.**

7 thoughts on “What I’ve been doing…

  1. Dear Cheryse
    Xeloda is a great drug to be combined with repurposed drugs. Did you take it continuously/metronomic of two weeks on and one week off?

    Like

  2. So so wonderful, I have tears in my eyes. God is soooo good. I’m dealing with a recurrence, (my mum has thyroid cancer too, lost my dad to cancer already) and through God’s amazing orchestration, I found myself on Jane’s Facebook group, and saw your post and here I am. My BC is same as yours and currently on third round of chemo. Thank you so much for writing, thus are the power of the written word “Write so it may be believed”

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s