DRUG H$LL

In my January 6 post, I talked about boarding the Big Pharma bus and how my journey was taking a turn down a road I am reluctantly following. To review: I am taking two new drugs: Afinitor (drug name "everolimus") and Aromasin ("exemestane"). I was under the impression that the Afinitor was NOT considered chemotherapy. I was wrong. Upon further researching, I found that it is indeed labeled "chemo," it's just supposedly more targeted to specific cancer cells than standard chemo (which pretty much kills everything).

I was able to begin both drugs right away because my oncologist gave me a week's supply of the Afinitor (although it was double the dose I was prescribed) and I was able to continue on Tamoxifen (an estrogen blocker I already had) until the Aromasin arrived.

So I thought all was well. I took the drugs and carefully monitored how I was feeling, hoping I would not experience any of the (absolutely terrifying) side effects that were listed in the drug description. So far, not a big deal. I have experienced stomach upset, loss of appetite, fatigue, and general loopiness -- but nothing that has kept me from average daily functioning.

Then I got a call from Humana, my drug prescription people. It seems I was being red-flagged because of the Afinitor order. The possibility existed that I might NOT be approved for the drug based upon my low-premium / high-deductible prescription plan with Humana. I was told that the cost of the drug was .... are you ready?..... $11,532.69 for a 28-day supply!! That comes out to approximately $412 per tablet. MY CO-PAY for this drug would be $2,600! I was asked if I wanted to go ahead and process the order and accept responsibility for this co-pay.

I was near tears. "Are you kidding me?" I asked the Humana rep. "Do you actually expect people to be able to pay this much out-of-pocket?" After a shameless rant to the poor Humana person, I apologized, told her that I knew it was not her fault; her name was Jessica and she was really very sweet and tolerated my rant with extreme patience. I then said that someone out there... not her, not me, but someone.... was making an obscene amount of money off the backs of "we the sick" in this country. Jessica agreed and sympathized. We mutually agreed that we were both in the system and could do nothing about it. She then said, "Humana has a finance department; they might be able to find you some financial assistance. Would you like me to begin that process for you?" It took me a brief 20 seconds to process what she had just said to me. I then responded: "WOULD I!? You bet, Jessica!" 

So the past week has been spent waiting for phone calls from Humana. Jessica put my claim onto the top of the "urgent" pile. I love Jessica for that. A few days later, I got a call from Carlyn (who happened to be in Ohio -- when I am on the phone with customer service people, I don't know why, but I enjoy knowing where they are when they talk to me); Carlyn gave me an update, letting me know that the Afinitor had been temporarily approved by Humana, PENDING my acceptance for financial assistance. I still wasn't out of the woods.

Today, I received a phone call from Tiffany (in Phoenix -- she enjoyed hearing that we were about to receive snow in the DC area). Tiffany was the angel of mercy blowing the trumpet of good news: I was approved for assistance. My co-pay would be 0 (that's ZERO) dollars. Amazing -- from $2600 to $0. 

So.... this has been a two-week excursion into drug hell. But ultimately, the news is good: the drug is approved and paid for and will be here in two days. My side effects are not great, but so far tolerable.

In the process with Humana, I found out from Carlyn that the foundation that is footing the bill for my drug is called Patient Access Network. I went to their website; it's a non-profit with HQ in Washington, DC. I plan to send them a thank you note; I might even deliver it in person because I would like to learn more about this organization. Meanwhile.... if you are ever feeling inclined to make a donation in my honor, whatever you do, DON'T let it be to one of those useless "walks for cancer awareness" or pink-ribbon organizations; let it be for Patient Access Network.

And let's hope this drug works! At $412 per pill, it oughta be the elixir of eternal life!!

Worry

A dear friend of mine posted the following on Facebook, just as I was sitting in my stew-pot of anxiety last week. It hit home -- hugely:

Worry is a waste of time.

It doesn't change anything.

All it does is steal your joy and keep you very busy doing nothing.

Well now, ain't that the truth!

The Bus: Driver or Passenger?

I am not sure why, but I use the metaphor of a bus for a lot of situations. For instance, when having a conversation about leaving this earthly plane, I often say something like, "Well, when my time comes, I would like to just get hit by a bus." This idea worked for me until someone pointed out that such a situation would create bad karma between myself and the poor bus driver, who would be overcome with guilt and remorse -- so much for that plan!

In my journey to overcome my cancer, if you have followed this blog from its formation, you will know that I am a proponent of natural therapies, and have tried to keep as far away from Big Pharma as possible. Since my initial diagnosis in the fall of 2013, I have prided myself on "being the driver of my bus."

After a visit with my oncologist today, my status has changed -- from driver of the bus to passenger. Which bus? The AMA-approved bus, the Big Pharma bus, a bus that travels a road much more heavily traveled than the less-traveled road I have been taking.

My C-T scan a week ago came back showing some signs of improvement in the original cancer sites; but it also revealed some new anomalies in liver and bone. For reasons that are very personal (and not to be discussed in detail here), I have decided to board the Big Pharma bus. This is not a happy decision for me, but will provide peace to my family instead of fear.

This means that chemotherapy might be in my future. But first, I am on two new meds: Afinitor and Aromasin. These are usually given together to try to force the body to overcome its seeming resistance to hormone blocking activity. Afinitor (scientific name Everolimus) is a type of drug that supposedly targets cancer cells more precisely than chemotherapy drugs. Aromasin ( Exemestane) is a kinase (enzyme) inhibitor. Using these drugs together is supposed to stop the tumor from making new cancer cells and cuts off the blood supply to the cancer.

Sounds perfect, doesn't it? Until you read the two-page list of side effects -- everything from nausea, mouth sores, cough (which I already have!) and diarrhea to rash, anorexia and hair loss.

But alas, I am now on the Big Pharma bus and no longer driving or choosing the route. Those side effects are just part of the road trip.

Some of you are probably thinking: Wow, Betsy must be so disappointed. Yes, I am. This is not the road I wanted to take and, quite frankly, it stinks. But then again.... I have been dreading my visit with my oncologist today, worried that she would say something like: "Well, look sister, you are in really bad shape. Ain't nothin' we can do for you. Go home and put your affairs in order." I did not get this message from the doc. I left her office thinking, "Well, dammit, this just might work." And she said, "Look, I could give you these meds plus chemo right out of the starting gate. But let's just see if the drugs themselves have an effect." So I will go back in three weeks and see how the blood work looks.

Keep those good thoughts and prayers coming.

Snowflakes

Wow! Evidently a lot of you DO read this blog because I received some messages yesterday asking how the PET-CT scan went (it was scheduled for December 9). Ok... so the scan..... it didn't happen yesterday because I rescheduled it to the last week in December -- one reason: because I couldn't get an oncologist appointment close to the scan time. But in reality, I wanted more time to apply some new protocols based on my visit with Barbara.

Who is Barbara? She is an acupuncturist/nutritionist/bio-feedback practitioner whom I saw 15 years ago for problems I was having with chemical sensitivity. When I found she was still in the area and doing bio-feedback, I made an appointment.

I have been having a lot of "wonderings" about all the things I am doing and about the protocols I received in Mexico. I know that all of the therapies I am on have been reported to be successful for fighting cancer. They can each contribute to pushing open the door to healing. Question is -- which one is the "key" to that door? I needed to find out before I headed back to Tijuana -- was it the IV Laetrile? the IV vitamin C? Selenium? Glutathione? Was the key to that door the dendritic cell vaccines (which I am still taking, by the way)? Was it diet? Supplements?

Barbara reminded me that we are all snowflakes -- not one like any other. This is why some folks are highly successful with one therapy while others might not be.

Trying to describe how Barbara gets the answer she does is not something I feel I can adequately describe. She uses a Bio-Mat (heated mat filled with amethyst crystals), which the patient lies on. She uses a computer program to assist her. However, most of the work she does herself. Suffice it to say, she can "read" my body. I'll never forget my first visit with her (15 years ago!) when she told me my gall bladder was in a bit of distress; I had just (well, the previous month) had a gall bladder attack and hadn't informed her of that. She just "knew." And she asked me if I was thirsty; when I said I was, she said, "I figured as much as your body seems to be in need of hydration."

Barbara went through the list of all the therapies I was on in Mexico and all the supplements and protocols I am on presently. She rated each one numerically, 10 being the highest, 1 being the lowest.
Interestingly, according to Barbara, the one therapy I was given in Tijuana that rated a 10+ was intravenous vitamin C. Now this is interesting because the Greek Test (blood test sent to Greece to evaluate my cancer cells' sensitivities to certain supplements or drugs) rated vitamin C with a high score; and Barbara was NOT aware of this. So her results paralleled the Greek Test. A couple of other supplements also scored highly -- but for the most part, the supplements I am taking did NOT rank up there with what I needed the most.

So -- based on this finding and others (it was a 3-hour session.... no way can I go into detail), I have increased my vitamin C intake 4 times what I was taking before. The other major changes (which are really pretty simple) are:
1) consuming 40 ounces of warm water with lemon juice every morning before consuming food, and 2) exercising on my rebounder (mini-trampoline) for 5 minutes, twice daily.

Barbara was also able to determine that making these simple changes would most likely have a significant impact on scan results, even in a three-week period. Thus, my change of scan date to December 28.

So, that's the news, folks. My visit to Barbara reminded me that just when we think we have all the answers, someone offers up another idea. We are, indeed, all SNOWFLAKES!

November.... and still holding

So many have asked how I am doing, so here is just a brief update:

All is well, inflammation in the breast is still under control. I am still taking loads of supplements, vitamins, and enzymes and following a strict diet. Latest addition to the protocol is a new juicer. It's awesome. I try to juice every day. It's quite labor-intensive, but provides superior nutrition, especially when I add wheat grass or kale. And it's delicious!

I have made an appointment for another CT scan -- it'll happen on December 9. I do not expect it to reveal that the cancer is gone; but I am hopeful that it will show a lessening in tumor growth. Once I have these results, I may be better able to determine if I will be returning to Tijuana for a "tune up." Everyone keep your fingers crossed that the scan shows improvement!

I am still injecting myself weekly with dendritic cell cancer vaccines. Also still injecting with mistletoe, every other day. I have found a health clinic in Columbia (Maryland) that offers colon hydrotherapy, massage, Reiki, reflexology, ionic footbaths.... and more. I had an amazing lymph massage there. After the December CT scan, I will be heading up there for colon hydrotherapy and a footbath to detoxify from the scan's radiation.

Another new therapy on the horizon: 2-way bio feedback. That'll be in December.

Happy Thanksgiving, everyone! I am thankful for all of my dear friends who are praying for me and supporting me on this "road less traveled."

October Update

It is difficult to post to this blog with frequency when I am in a "holding pattern," which is the case at the moment. Day to day, now that I am back from the clinic in Mexico, there just isn't much happening!

I have visited both docs, my regular oncologist and my mistletoe doc in Baltimore, both of whom were pleased to see that my physical symptoms have improved. I am lucky to have an oncologist who is, if not enthusiastic with and accepting of the alternative path of treatment I have taken, at least tolerant of it. She asked what my Mexican doc thinks about doing a follow-up CT scan; she agreed with his advice to revisit this (a scan, that is) in early December, to give my present protocol time to hopefully further my progress. Having frequent CT scans is NOT good for the body.

In discussing the results of my Greek test with my mistletoe doc, she is looking into changing my supplementation. But for the most part, she has combined her recommendations with those of Dr. Alvarez. This means I am taking a boatload (!) of supplements every day. The regimen is a bit overwhelming; many are taken with meals, many without, all at specific times of the day. It's a lot to keep track of!

Diet is key, of course. Lots of fresh veggies and fruits, smoothies, very little animal protein, no alcohol, no coffee. Still doing the daily coffee enemas. Have now added hydrogen peroxide (food-grade) baths to de-tox and to oxygenate the cells transdermally.  Daily sun-bathing to up my intake of Vitamin D is also in the protocol, weather permitting. Love these sunny October days!

I am looking into hyperbaric oxygen therapy; also looking for practitioners who offer IV Vitamin C.
According to my Greek test results, my cancer cells are "sensitive to" vitamin C; taking it orally is very rough on the stomach, so IV therapy is preferred.

I am back to singing and piano-playing gigs, as well as piano teaching. The routine is welcome, but I miss that proactive feeling I had of "doing something!" each day in Tijuana. I am feeling good physically and all those little bee-sting sensations on my right side are totally gone. Inflammation is almost non-existent.

I love Saturdays. That's the day I inject myself with my own cancer vaccine that I brought back from Tijuana. I am so very grateful that this new therapy exists and that I was able to find a physician who could make it happen for me.

Adjusting... and preparing for Change?

It feels good to be home after my intensive 3-week cancer therapy in Mexico. It is taking me a while to adjust -- back to church music gigs, back to teaching piano students, back to preparing my own meals, back to twice-daily dog-walking, back to ROUTINE. It was a bit confusing at first to re-configure my supplement schedule (some with meals, some without) and to get accustomed to daily coffee enemas (now, THAT was an adjustment!).

My personal vaccine supply, which needed to remain cold on my flight home, did arrive safely and (thank goodness) nicely chilled, although my backpack was a bit soggy upon arrival at BWI. The night before leaving Tijuana, I spent a rather sleepless night creating an "ice bed" for the vaccines in the hotel bathtub and keeping the ice supply fresh and cold. I had to make a long trip down the elevator, outside and to the opposite end of the pool, to retrieve ice from the hotel's ice-maker. After my first trip doing this, there was no way I could get back to sleep. Meanwhile, I had asked a hotel clerk to store my ice pack in the restaurant's freezer so that I could keep the vaccines cold on my two long flights home. It was a bit touch-and-go as I was checking out... clerks had a bit of difficulty locating the ice pack; but it finally showed itself, thank goodness.

My first in-home inoculation occurred last Saturday, with the help of son Nick. I find it almost miraculous to think that I have my very own cancer vaccine in my fridge. The supply will last for 13 weeks.

And now a new wrinkle in the sheets: I received via email the results of the "Greek Test" (see previous post about this). The results are quite confusing and rather technical; but upon first perusal, it is obvious that many of the therapies and supplements I had been using, while beneficial and therapeutic for most people and many cancer patients, are not actually the best choices for me and my malignancy. After I meet with Dr. Grundmann to re-evaluate, I will add more detail to this subject. I am preparing myself for the fact that much of what has been put into place will change based on this Greek Test.

Many have asked: "So how ARE you?"

I am feeling fine. As for progress, yes there has been some: in the physical attributes of the cancer. Dr. Alvarez was extremely pleased to see swelling and redness diminish. Also, the little shooting pains I had been experiencing have almost completely disappeared. For now, this is all we have to go on. The final blood work showed some anomalies that the doc attributed to the body throwing off a lot of toxins and lysing of the cancer. During my entire stay in Tijuana, my blood pressure registered in the normal range; before, it had always been on the high side. According to the doc, this is usually because of the IV Laetrile.

More to report after doc visits next week. Thanks for all the prayers and well-wishes from all of you. Trust me, they mattered!!