Archive for November, 2011

Living like it’s Ground Hog’s Day to Cope with Caregiver Burnout

Wednesday, November 30th, 2011

I managed to take ten days off from my current angel duty of brain cancer recovery support for my Mom. Unfortunately, the folks that stepped in had a “hiccup” and our star patient ended up back in the hospital. From the sounds of it, she is set back to her condition six weeks ago – before we started her recovery program. The thanksgiving visitors thought we were deranged for pursuing a recovery approach. They did not think it was worth doing. WOW – what a very fast demonstration of my post on how cancer is a belief system. We are alive until we are dead. When people are treated as if they are going to die, is it any surprise the outcome is death?

I am writing this on the plane heading back earlier than expected. On the first leg of this flight, I was disgruntled and disheartened. I was enjoying settling back into my home and regaining some semblance of “normalcy” in my life. And I was rekindling some great friendships that had taken a back seat to the chaos of my life. I was enjoying getting on with my life and did not want to head back to angel duty, yet.

Something shifted for me between planes. I remembered Bill Murray’s Ground Hog’s day movie where he has to live the same day over and over and over until he finally starts to enjoy and accept his strange fate. It’s only then that he wins the girls heart and gets to move on to Feb. 3rd. Seeing that I was born on Ground Hog’s day, can the same experience be happening with me here? That until I learn how to enjoy and accept my fate as the lead angel on this tour of duty, nothing will change with it or for me?

I got on my next plane with a “bad” number for boarding the Southwest flight. It was a number where your only choice is a middle seat. The one choice I did have was which middle seat. That was good enough for me. I was happy. I picked a row with a sweet looking older woman in the aisle seat and a friendly grunge looking 20 something guy at the window. Like Bill Murray did when he was stuck repeating ground hog’s day, discovering the small choice I had in this situation helped me reignite my inherent joie de vivre. I had a blast with my row mates on the flight – probably because I was back to my natural state – happy. Lets hope I can remember ground hog’s day as my cure for caregiver burnout. I’m ready to go back to my angel duty with a spring in my step and a smile on my face.

Cancer is a Belief System and What I Would Do Today To Cure Cancer if I Got It

Monday, November 21st, 2011

Whether you believe you can or you believe you can’t – you are right.    I’ve seen this first hand with how my Mom has been treated by the medical establishment regarding her cancer.   The first round of doctors believed that my Mom being 78 years old was going to have a fast demise from her brain cancer and they acted in accordance with that belief.   The second round of doctors believed my mother had the ability to recover from her cancer and acted in accordance with that belief.

Bruce Lipton, a cellular biologist talks about how cancer is a belief system in his seminal work “The Biology of Beliefs” where he proves how cancer is a belief system.   People’s belief systems are entirely made up of the culture in which they were raised and how they continue to cultivate their beliefs.   I was raised to believe that you could accomplish anything you put your mind to.  I’ve had the good fortune to have many corroborating experiences to that belief throughout my life, and some amazing guides along them way.

One set of guides have been various research librarians I’ve worked with throughout my technical career – first as an Aerospace Engineer in the Air Force and then as a research scientist for a large multinational corporation.   Their philosophies where everything you need to know to solve your current problem has probably already been discovered – you just have to find it.

And I did find it.   I learned about gene targeted therapy at the burzynski research clinic.   And I learned that the genes that can cause cancer and those that can suppress cancer can be turned on and off throughout your life due to various factors such as pollutants, aging and trauma.  To counter the effects of cancer, you have to turn off the genes that are causing the cancer and turn on the genes that suppress cancer.   There are many many ways to do this.

Based on my research and my experiences, at this time, it is my belief that there are four things I would do if I were to get a cancerous tumor in my system that I wanted to remove.

1. Consume at least 8 g of curcumin (turmeric) a day in a gel (oil based) capsule- to turn off the cancerous cells.  Curuminoids are water soluble for six hours, but are much more stable in oil – which is why I prefer the gel caps over the powdered based turmeric pill formulations which are not as readily absorbed in your blood.   For curing cancer, I’d do the mega doses of the turmeric supreme gel caps over the curcumin root tea as that is too weak a formulation.  You may be able to find the turmeric supreme gel caps at Whole Foods.   (Beevers C, Li F, Liu L, Huang S (2006). “Curcumin inhibits the mammalian target of rapamycin-mediated signaling pathways in cancer cells”. Int J Cancer 119 (4): 757–64.) And also consume a tea made straight from the root  – as this is the most pure form.   The curcuminoids are only good for six hours so make new tea several times a day and drink it continuously.

2. Consume a mix of medicinal mushrooms – to turn on the immune response cells that fight cancerous cells.  I like the Purple Mushroom Defense because they also include the Agaricus Blazei mushroom that research shows inhibits the growth of blood vessels to support tumors.   You can learn more about the medicinal properties of mushrooms by Paul Stamet.

3. Create an alkaline environment in my blood system by drinking high PH water and eating a low calorie ketogenic diet of raw green vegetables with sufficient protein and plant based fats to create an inhospitable environment for cancer cells and to  starve the cancerous cells.

4. Every four hours, go into a hyperbaric oxygen chamber with inhaling straight oxygen for an hour.   The super oxygenates the brain and cancer cells cannot exist in an oxygen rich environment.

And since I want to keep my cells healthy in my life, what I am doing is:

1. keeping my immune system strong with daily exercise, a healthy diet that stimulates the good bacteria in my gut , limit my sugar consumption to keep my blood sugar levels low, surround myself with positive, uplifting and happy people and environments,  take a medicinal mushroom supplement to keep the tumor suppressor genes alive and well, and focus on learning something new every day and developing mastery of  a significant new skill every year.

2. minimizing the environmental toxins in my life from all realms.

3. drinking curcumin root tea several times a day to decrease cell protein receptors that have the tendency to increase with age (this allows cancer cells to grow and also has been implicated in Alzheimer’s disease).

4. Doing an hour a day several times a week in my regular hyperbaric oxygen chamber that is in my bedroom (does not have pumped in oxygen as that is very dangerous in an at home system)  – but it still super oxygenates my blood and helps keep my brain healthy.

Targeted Gene Therapy to Cure Cancer and Some Alternative Approaches that Also Help Slow Aging

Tuesday, November 15th, 2011
Targeted Gene Therapy To Counter High Levels of VEGF

Targeted Gene Therapy To Counter High Levels of VEGF

This is an extremely complex picture of how gene’s help cancer cells grow.  Faults in two types of genes cause cancer: oncogenes, which drive the growth of cancer cells, and tumor suppressor genes, which prevent cancer from developing. The concept of the targeted gene therapy is to attack the most vulnerable parts of the cancer cells based on the person’s specific genes that are causing the growth of cancer cells and the genes that have been turned off preventing tumor suppression.   The four boxes in red are the chemo drugs my Mom is taking to cause cancer cell suicide based on aging gene dysfunction that enabled this brain tumor to exist in the first place.  At the Burzynski Research Clinic, they made this determination by taking a blood sample looking for specific gene markers that told them which genes were turned on and which were turned off causing the growth of her brain tumor.  The one cell growth factor that I have been studying is the mTOR protein.   Inhibiting mTOR slows aging.   The one drug my Mom is taking to stop mTOR (and stop the cancer cell proliferation) is Afinitor.  Several other substances inhibit mTOR in cell cultures – curcumin, EGCG (in green tea), caffeine, and resvratrol (in red wine and grape juice). (Beevers C, Li F, Liu L, Huang S (2006). “Curcumin inhibits the mammalian target of rapamycin-mediated signaling pathways in cancer cells”. Int J Cancer 119 (4): 757–64.) You have to consume a lot of cur cumin to have kill the cancer cells – but it is physiological possible according to the research – “Phase I clinical trials have shown that high doses (8 g/day) of curcumin can be delivered to patients, yielding 1.77 ± 1.87 μM average peak serum concentration, with virtually no deleterious side effects.  We observed complete abolition of S6K1 and 4E-BP1 phosphorylation and reduced levels of mTOR phosphorylation/autophosphorylation upon 2 h treatment with 2.5 μM curcumin. Our results suggest that the lowest concentration of curcumin that could possibly affect these critical phosphorylation events is well within the range of physiologically achievable concentrations of the compound in cancer patients.”

Getting Better and Better Everyday in Every way – thank you Dr. Burzynski.

Monday, November 14th, 2011

A month ago today my Mom was unconscious for 24 hours in a hospital in Venice, Florida, her left eyebrow twitching for five hours.   We had left Connecticut two days earlier where she had been put on hospice after a visit to her neuro-oncologist Sept. 22nd.   One of my brothers, my father and I  figured if she was on a death watch, why not go to Florida and enjoy whatever time she had left.   In Florida,  at the hospital after her second seizure, my Mom was again put on hospice.  Going into hospice was a condition to leave the hospital and bring my mom home.   Otherwise they were going to put her into a “rehabilitation” center.   None of us liked that idea and my parents have long term care insurance that covers in home health care.

ONE month later, my Mom is on the path to recovery.   We do have the hospice nurse in Florida in part to thank for this.   My mom was on a fast decline because of brain swelling due to the seizures caused by her brain tumor.   During her second seizure, the attending physician caring for my Mom when she was unconscious was insistent that my Mom’s quality of life would be much better if she had steroids –  if she were to wake from being unconscious.   She did wake up, but the second second seizure did set her back.   Her voice was inaudible as it was so weak.   She could no longer sit up.   She spent most of her days sleeping since they had doubled the dose of her anti-seizure medication to keep her from having seizures.    The attending neurologist did not want to give my Mom steroids – saying he wanted to “save” them for when they were really needed.   Fortunately the hospice folks disagreed.   The steroids were going to improve the quality of her life (they actually probably saved her life) so we were given a prescription.   The steroids helped her stay alive long enough for us to get her to the Burzynski clinic.

Now my Mom converses loud enough so we can all understand her and is becoming quite the comedian.   When asked if she had shortness of breath at the clinic – she replied “only when they throw cold water on me.”   My Mom can now sit on the couch without slouching and without supports.   She can reach for things without falling out of her wheel chair.   She can even walk in the pool.  She is eating  three times more food than she was a month ago and is awake and alert the majority of the day.   She has left side paralysis because of the swelling from the brain tumor – but the reflexes are starting to work again in her left leg and she can wiggle the toes on her left foot.   She can stand without as much support on her right leg.   She is gaining weight.   She is starting to write again and is learning how to count again.   Its pretty amazing to see the capabilities she lost from this brain tumor and how fast she is regaining them as the cancer is starting to go away.   Hope isn’t even required anymore as it’s just a known that she will continue to get better.   Her goal is to be able to walk by her grand daughter’s wedding in July.

Success Inspires People to Stay the Cancer Cure Course

Sunday, November 13th, 2011

I’m reading a fantastic book recommended by my Mom’s Feldenkrais therapist in Florida.   It is by Norman Doidge, MD – The Brain That Changes Itself about how people can overcome deficits and achieve any level of personal performance that suits them.   We all have weak areas and the techniques in this book could help anyone who wanted to give them a fair shake.   What is amazing about the stories in the book is that it really doesn’t matter how the brain has been damaged – when the people profiled in the book wanted to develop a capability they didn’t have but knew they wanted, they were able to over time do just that.   What the book emphasized that hit home for me right now is how people reach a learning plateau and need time to rest and assimilate new skills.   This does not mean that improvement has ceased.   It’s important to note this when working with my Mom as she recovers from the impact of brain cancer.   She is doing an amazing job regaining capabilities – but it’s haphazard and some days are better than others.

Wild Alaskan Salmon on the Burzynski Cancer Cure Menu

Tuesday, November 8th, 2011

We met with one of the three nutritionists at the Burzynski Clinic.   Having followed an anti-cancer diet now for three years successfully keeping cancer at bay with my own adrenal tumor, they were the FIRST medical professionals I have met in this whole cancer saga who paid the proper attention to the role of diet in cancer recovery.  What was even more fantastic – their in-depth analysis of just why wild Alaskan salmon is so good for helping their patients recover from cancer.   According to the Burzynski nutritionist “wild Alaskan salmon contains an antioxidant “astaxanthin” that is about 500x more powerful than vitamin E and beta carotene in neutralizing, cleaning up, and preventing free radical damage and disease.   It is loaded with healthy omega-3 fats (DHA & EPA) the can keep your at your healthiest and that also have an amazing effect on serotonin levels, a brain neurotransmitter known for its ‘feel good, feel happy’ qualities.”

Day 6 of Curing Brain Cancer with Dr Burzynski – Endogenous Amino Acids

Tuesday, November 8th, 2011

Yesterday was a rough day in the quest to cure my Mom’s brain cancer.   She had a really really bad reaction to one of the drugs – it was the last one she was prescribed.    It wasn’t bad from a survival perspective, but bad from a quality of life perspective.   I’m not saying anymore.   We are NEVER giving her that one again.   And to think that people who are going through regular chemo have to put up with that type of impact as a part of the treatment is outrageous.

At her daily doctor’s appointment yesterday we were given the results of her Endogenous Amino Acids test and 12 of the 24 Amino Acid readings were over the max limit.   The Physicians Assistant who handed me the report did not know what it meant.   We did have an appointment to discuss with the nutritionist but she had gone home early because she wasn’t feeling well.   I’ve been scouring the internet to try to make sense of this lab report.   Rather obscure test as there are no reference sites for this one.   From what I could make out – it’s probably her ketogenic diet that is tipping this into this range.   We did also find out that her b-12 levels are sky high – I guess the chewable 5000mg b-12 tablets work GREAT.   She is good on B-12 for a while.

What I really like about the Burzynski’s Clinic – these folks are thorough and on top of everything.   And they are quite happy to share their lab results with you, give you copies and help you make sense of it.   You are treated like a partner in the cure program instead of a necessary evil to be worked around like most of the other medical places we have encountered on this journey.   We are made an integral part of the team on the pursuit of the cure.   We are anyhow, so why not work with us this way?

The Targeted Gene Therapy Cocktail to Cure Brain Cancer

Saturday, November 5th, 2011

On the first day we were at the Burzynski Clinic – they did a test on my Mom’s blood to see what type of genetic markers she had (oncogenes).   Their goal with Plan A is to wipe out the tumor cells that make up my Mom’s brain cancer based on her specific genetic markers.

They started her that very same day on Sodium Phenylbutyrate. Sodium phenylbutyrate (Buphenyl) taken orally is metabolized in the liver into a combination of phenylacetylglutamine and phenylacetate, which then enter the bloodstream.  Those two chemicals are the prime ingredients of antineoplaston AS2-1. Sodium phenylbutyrate was given an orphan drug designation by the FDA for use as an adjunct to surgery, radiation therapy, and chemotherapy for treatment of patients with primary or recurrent malignant glioma.  According to Dr. Burzynski, when the body does not have enough antineoplastons, cells that begin to develop abnormally are not corrected, and tumors form and grow. Antineoplaston therapy supplies the body with the substances needed to correct the abnormal development of the cell and allow it to develop normally or to die a natural cell death, while healthy cells are not affected.

The second day she started on a targeted therapy to block specific enzymes and growth factor receptors involved in cancer cell proliferation. The drugs in this group are also called signal transduction inhibitors. She was given Erlotinib (Tarceva®).   It is currently approved to treat metastatic non-small cell lung cancer and pancreatic cancer that cannot be removed by surgery or has metastasized. This small-molecule drug inhibits the tyrosine kinase activity of EGFR.   They use this off label to treat my Mom’s brain cancer.

The third day she started on a targeted therapy to block the growth of blood vessels to tumors (angiogenesis). To grow beyond a certain size, tumors must obtain a blood supply to get the oxygen and nutrients needed for continued growth. Treatments that interfere with angiogenesis may block tumor growth.  She was given Pazopanib (Votrient®).  This is currently approved for the treatment of patients with advanced renal cell carcinoma. Pazopanib is a small-molecule inhibitor of several tyrosine kinases, including VEGF receptors, c-kit, and platelet-derived growth factor receptor.

The fourth day they start her on another targeted therapy that also block specific enzymes and growth factor receptors involved in cancer cell proliferation. These drugs are also called signal transduction inhibitors.  She is being given Everolimus (Afinitor®).   This is approved to treat patients with advanced kidney cancer whose disease has progressed after treatment with other therapies, patients with subependymal giant cell astrocytoma who also have tuberous sclerosis and are unable to have surgery, or patients with pancreatic neuroendocrine tumors that cannot be removed by surgery, are locally advanced, or have metastasized. This small-molecule drug binds to a protein called immunophilin FK binding protein-12, forming a complex that in turn binds to and inhibits the mTOR kinase.

And the story continues…….

The Cost of Curing Brain Cancer

Saturday, November 5th, 2011

This experience is not for the faint of wallet.   Many hospitals that focus on curing cancer require upfront payments over $100k.   At the Burzynski Clinic they operate on a pay as you go model that makes it easier to get into the program and give it a chance to work so that you know the value of what you are getting.   To start in their system, you pay  $500 for them to review your records.  Once you are accepted, you have to cover the travel costs to get here and the additional costs for lodging.  Granted this is far less than what most folks spend on vacation.  And same as the cost if you are traveling anywhere to have the experts treat your life threatening condition.   No problemo.   Next is the $1000 for the initial consultation – this covers three doctors evaluating your records, your in person condition and determine their initial assessment of a customized approach to treat your cancer.  Then you meet with the financial counselor who charges your card another $13,500 for retainer fee to cover the cost of treatment if you want to proceed (okay who would not want to proceed when the life of your loved one is at stake).   This is still far less than what other hospitals charge you to walk in the door.   You then agree to a $4500 per month management fee of your case for as long as you are their patient (we sure hope Mom gets healed fast).    On their movie that is all over the net they show the results of the tumor before and after – it didn’t look with this patients that there was a lot of long term management required.   But when I was looking at all the kids they have cured of brain cancer, it said by each kids pictures they were still doing their treatment.   This could get to be a very pricey proposition if we have to keep paying them $4500 per month to keep my mom’s brain tumor at bay indefinitely.   They do offer to provide a discount for the monthly fee if you are a self-pay.  They consider people who have medicare and supplemental insurance as a self-pay because they don’t participate in those plans.   I’m opting for their current promotional video reality – that we send my mom’s tumor a packing not to return with no further treatment.   So far their fees seem very reasonable for the level of service we are getting and their unique expertise.

Then there are the medications that they start you on slow.   The benefit here is that most health insurance plans cover the medications.   But you have to submit for the reimbursement yourself.   They do help you out by only prescribing the medications for a couple days at a time to make sure your loved one can tolerate them –  as you cannot return unused medication.   Today, the three pills we have to give my Mom over the weekend that target some replicating feature on the outside of the tumor cells cost $2k.   I’m still not sure how many pills that $2k covers.  Then there are the medical imaging studies.   Which ones are covered by medical insurance is a total crap shoot.  Today we didn’t have to pay for the echo cardiogram but were told we had to pay for the PET Scan.   When we got there, they submitted both to Medicare.   We will have to see.   Granted, if this process cures my Mom, it’s worth every penny we paid.

So far we are still far less than one year of my oldest daughters college education.   And we have a large family with a willingness to help.   But having a better idea of the costs we could be in for would be good to know as it does start to feel like they get you coming and going with their approach.   Sticker shock sets in very fast for folks used to their health insurance picking up the tab on all their medical costs.   It still is more accessible from a cost perspective than many other larger well known conventional cancer treatment centers.

What Kills Most People is Not Heart Disease or Cancer – it is Ignorance

Thursday, November 3rd, 2011

Michelle LaBrosse, PMP

We started my Mom today at the Burzynski Clinic to cure her brain cancer.   This place is run the way medicine should be run.   As we walked into the building, we were met by a receptionist who handed us our schedule for the day and escorted us to the 2nd floor waiting room to meet with the intake Physicians Assistant.   We reviewed all the intake forms we had filled out a couple weeks ago.  But the primary purpose of the meeting it seemed to me was to assess our intentions and our beliefs about curing cancer and just why we did not go the conventional route with chemotherapy.  (It wasn’t going to cure her cancer and might in fact kill her so why risk it).  Then three physicians spent an hour reviewing my Mom’s case.   They came in and discussed their assessment.   Which was fascinating and validated earlier perceptions of the neurosurgeon in New York.   My Mom had a very small (the size of a pea) dangerous tumor – an anaplastic astrocytoma.   The neurosurgeon in NY removed it when he did the biopsy resection of her brain.   The larger more diffuse tumor has not grown and is considered a very low grade brain tumor – which is causing brain swelling.   The brain swelling is causing most of her symptoms and was increased by the seizures (caused by the brain surgery).   A precautionary dose of anti-seizure medication AND steroids may have prevented most of my Mom’s increasing deficits.

The doctors at Burzynski proposed a three level approach to shrink the large diffuse brain tumor (without surgery, dangerous chemicals or harsh burning radiation rays).    And they have also proposed an approach to insure the dangerous small tumor does not reappear.   They follow a conservative approach both medically and financially.   They first try a gene targeted therapy protocol using specially formulated medications that are customized to my Mom’s genes.  This is plan A – and will take about ten days to see if it bears fruit.   Plan B is a more aggressive approach to deliver other gene targeted therapies intravenously to shrink the tumor.   Plan C is the most aggressive using the FDA Clinical trial phase III approach that will wipe out the tumor if Plan A and B do not work completely.   Because my Mom never received radiation or chemotherapy,  her chances of success jump from 25 percent to 50 percent.   They emphasize personalized treatment plans at the Burzynski Research Institute so this is the personalized plan to cure my Mom’s specific brain cancer based on my Mom’s genes and her specific cancer.

Yesterday they did blood and urine tests.   Today she is going to start Plan A.  Tomorrow she has the baseline imaging studies done.   Because EKG’s taken during my mom’s seizures showed bundle branch blockages – but on either sides of her heart (not typical of a heart problem).  they are doing an echocardiogram to see if there is in fact a heart problem to consider or to validate if the EKG readings ware due to the seizures.  GOOD MEDICINE – I wonder why no other physicians ordered this?   Oh I forgot – it was because she was 78 and they treated her as if she were dying, NOT LIVING.

At the Burzynski Clinic from 3 – 5:30 every day is set aside for education.   Yesterday we learned about Gene Targeted Therapy and how it works.   We also met another patient who was in for the same condition as my Mom.   This woman had had left side  paralysis just like my Mom.   And she became paralyzed on her left side after her first seizure too – just like my Mom.   When her brain tumor shrunk, it took her about a week to learn how to walk again.   This was very encouraging for my Mom to meet her as she does not want to be cured of her cancer to just end up being impaired long term.   She is going for a full recovery.  The goal is to be playing tennis again by Christmas.

At our education session, I learned something that I have to say I whole heartily agree with – it is not heart disease or cancer that is the number one killer.  Ignorance is the number one killer.   And I dare say it is NOT the ignorance so much of the patient but the ignorance of who they seek out for medical care.   For as long as I have been a professional, I have noticed that the most arrogant professionals tend to also be the most ignorant.  And what constitutes the height of arrogance is when a doctor dismisses you and your research or others research as irrelevant yet fails to do their own research.   Most doctors I ran into BEFORE I went to the Burzynski Research Clinic not only dismissed other research, they down right discouraged us from seeking it out.   And when we did, they did not embrace it yet were threatened by it.   Thus fostering more ignorance and causing more needless suffering.  The folks at Burzynski welcome the insight and research.   Why – their main mission is to CURE their patients’ cancer.