I have been doing really well following my surgery October 2015 to remove the IVC filter from my vena cava vein which was installed to protect me from a possible migration of my two DVTs (blood clots in my abdomen) during my big surgery for repair in July. And I have just been taken off my daily Loving shots which were done each day by my home care nurse. This gave me such a feeling of freedom that at the last minute I decided to take a leap of faith for my strength to continue in order for my husband Nazim and I to be able to make the long drive down to Mission Bay near San Diego CA so that we could attend the BEMER Medical International Conference.
We stayed at The Dana which is where the conference was held and it is a lovely hotel on the water and it was the first time in so long that we had been away. I really felt my life flowing back into my whole being as we mingled with our fellow BEMER distributors and met the exciting International team. We had the most wonderful weekend imaginable and during our attendance I was surprised by our brilliant CEO Nik Gleim’s invitation to me to share my testimony on stage. You see I have been using the amazing BEMER device (BEMER is an FDA registered class 1 medical device) through my whole journey with cancer as one of my primary enhancement tools.
Most of you know already that nothing cures anything and people who make claims that do, only show that they don’t understand healing as only the body can heal itself. However we can give our bodies the right tools, such as good nutrition with a healthy, organic diet, whole food/ nutraceutical supplements and state of the art advanced tools such as the BEMER, which enable the body to heal itself. And in my case I have used this tool as an adjunct regime along with the traditional medical modalities, such as an in the very long and involved 8 hour ‘debulking’ surgery I had had in November 2014 and the 6 rounds of chemotherapy I endured. Of course. I have no words as to how grateful I am to BEMER for providing this technology to the world. (learn more about the FDA registered BEMER device at: http://www.artofwellness.bemergroup.com)
This adventure to Mission Bay by car was my first outing and trip as I mentioned above with my husband since my cancer journey last November of 2014. And I was able, while there to confer with some of the most brilliant MD’s and Naturopathic doctors on the planet on what I have done thus far in my healing protocols and what we have in mind now for future treatments and it’s good to know what I will embark upon vis a vis immunotherapy is so cutting edge.
I also conferred with one of our medical experts on my specific choice of places to do the the personalized medical paradigm called immunotherapy. I have selected a facility in the Grand Cayman Islands called PerseusPCI.
My husband and I are thinking very positively about immunotherapy and how it will be my personal insurance policy against cancer returning, however the cost to do these treatments which are a series of 4 personalalized vaccines made only from my biological materials plus two boosters which is not the primary focus of my funding effort with GoFundMe. We knew by storing the tumor tissue live from surgery that this would be a reality for me to do so.
We are at this point shy of the $50,000 we need to do the protocol so it very important to us to hear any creative fund raising idea’s you have perhaps with Star Trek or the Elvis community, etc., and you idea’s are most welcome. Your contributions to GoFundme at this link are and have been thus fat invaluable to my future and we consider it our lifeline http://www.gofundme.com/kvo9xs
You all might also be interested to learn a little bit more about the Cancer Immunotherapy that I will be doing and I can share that even the costs must be incurred by us personally I will be part of an FDA trial at PerseusPCI in Grand Cayman.
Here is what I know so far about what is being done at Perseus and other places around the world which each offer their own versions of this cutting edge cancer treatment.
There are currently many approaches to cancer immunotherapy in testing throughout the world today. And there have been many notable failures and a few successes that have led to FDA approval and commercialization of immunotherapies that offer the kind of hope that had never been possible for some patients. Whatever track each company takes in order to fight cancer with immunotherapy, the one settled question is whether or not the immune system can be manipulated to recognize and destroy cancer cells. It can, and does, for patients around the world every day.
The key factors of the vaccine therapy (vaccine is not quite the right terminology but most of us know what that is and so this term is being used) in Grand Cayman is that it creates a specific immune response to fight the particular antigenic profile of each patient’s disease, and that the response, because it is delivered at the cellular level, is non-toxic. This attractive safety profile provides unusual flexibility when introducing the therapy into a patient’s treatment protocol. Because it uses the antigenic profile of each patient’s disease, it also can be created for any tumor and any patient.
One of the first uses of the funding here at my GoFundMe was to harvest and store my own tumor tissue which requires a large chunk of money to prepare it for storage and then a monthly fee to maintain it for use in the immunotherapy personalized vaccine and we did this during my surgery, so now we are paying for the cost of the monthly storage. Thank heavens we have the right amounts of tumor tissue stored live, and the amounts have been verified thus far by the experts at this facility as being more than adequate. It seems all that is actually needed is one gram which is about the size of an eraser at the end of a pencil.
We must continue to raise the funding to travel multiple times to Grand Cayman to get the treatments and be part of the FDA clinical trial. The procedure to get things started is to blood panels here and then in Cayman get a Nupogen injection to boost my white count and then they draw 100 mms of my blood (about 10 tubes of blood), which is used with the tumor tissue to make the vaccines which are produced in 48 hours, and then the patients receive their first vaccine at the end of their first trip. So I will be traveling to Cayman once every 30-45 days possibly longer, for 4 months to complete the initial set of four vaccines. Each vaccination consists of a single intradermal injection of one million activated dendritic cells which my own immune system has made and this is divided into two dosages and injected on the top of each thigh just under the skin.
I was told this weekend at the BEMER medical conference by one of my most respected medical experts and advisors that this particular immunotherapy approach and use of the dendritic cells is state of the art right now and that my doing this is like an insurance policy but without a guarantee of payment. Well, we all know there are no guarantees in this life and sometimes we have to be a bit of a gambler especially if there is no downside other than the expense.
Because this is so interesting please allow me to share a little more information specific to my form of cancer which is ovarian cancer:
Ovarian cancer occurs in over 22,000 patients/year in the US and is the most lethal gynecologic cancer accounting for 14,000 deaths/year.
Due to the lack of specific symptoms which was my problem experiencing what I thought was just abdominal bloating, the majority of ovarian cancer patients like myself are still diagnosed at later stages of the disease and because I didn’t act quickly enough when I first saw that tummy of mine pooching out, I was at Stage 3.
I couldn’t believe that a fat tummy could be anything to worry about. Patients who present as I did, are routinely surgically ‘debulked’ (which is a kind of scraping) to minimal residual disease, and then treated with platinum- based and taxane-based chemotherapy and I had 6 rounds of this type of Chemo along with a complete hysterectomy, 2 bowel resections and the removal of 10 pounds of cancerous fluid from my peritoneal cavity. I had blood transfusion and many complications such as infection and needed high dose antibiotics. I was in the hospital for 4 weeks all told. Fortunately, the majority of patients, like myself respond to this Western medical treatment regimen and are clinically free of disease as I am now. And this is where I stand today, as I am in remission. However, unfortunately, the majority of patients like myself relapse (I am thinking positively that I will not be part of this statistic). And once the disease recurs in patients like me, the treatment options and successes drop dramatically. See why I need your help as this is my brief window of opposetunity?
There are multiple forms of immunotherapy out there and I have explored many others as many also include cancer vaccines which have been attempted in ovarian cancer patients, but the vast majority have been tested in late stage patients with substantial tumor burden and this has shown to be of minimal benefit. I just missed getting into one at the University of Pennsylvania because the patients needed to have completed chemo in the last 12 weeks and mine was completed in May of 2015 putting me outside the window of opportunity for that trial.
The current data suggests that the best time to intervene with a personalized cancer vaccine strategy is in the adjuvant setting after patients have been rendered disease-free by standard of care therapies and thankfully I am in that place right now.
Given this fact and the natural history of stage III and IV (resected) ovarian cancer, this disease presents an optimal opportunity for the testing of an adjuvant vaccine for the prevention of recurrence.
Here is some information about the Vaccine:
The majority of ovarian cancer vaccines tested to date have been antigen-specific vaccines targeting tumor–associated antigens and utilizing a variety of delivery systems and immune- adjuvants. As opposed to testing an “off the shelf” vaccine that might be able to treat a subset of patients, the approach in Grand Cayman has been personalized to the patient and applicable to all patients. This vaccine approach consists of harnessing the most potent antigen presenting cell in the body, the dendritic cell (DC), together with the full repertoire of tumor antigens from an individual’s cancer in the form autologous tumor lysate. They have conducted phase I and II studies using an autologous DC-tumor cell fusion technique that has now been simplified into a DC-tumor cell lysate vaccine. The autologous tumor lysate (TL) is loaded into yeast cell wall particles (YCWP) that are naturally and efficiently taken up into the patient’s DC. These autologous tumor lysate, particle-loaded, DC (TLPLDC) are injected intradermally (ID) monthly x 3 followed by boosters at 6 and 12 months. I have been told the side effects might include flu like symptoms and fever but not much else has been experienced thus far by others.
I hope this is understandable as you read through it and may help you understand that even by helping me we may be able to help many other people as I allow myself to be part of this clinical testing and be a part of this unique paradigm of a kind of Star Trek type medicine of the future. I wonder what Dr. McCoy would think about all this?
I want to be here of course for my family but also to help others. In order to do that we have to help me first, it’s kind of like when they tell you on a plane to put your own oxygen mask on first so you can then assist others! And I so hope that you will be able to give what you can to allow me the honor of being a test subject for this, the medicine of the future.
I might just have to say since I have just returned from the amazing BEMER medical conference something I said on stage and that is: ‘BEMER’ me up, Scotty!
Loads of love to you all and blessings to each of you with a prayer that you never have to go through this or ever lose anyone you love to cancer..both yours and my contribution here goes beyond money..we are helping to make history and I am thrilled at the prospect of being able to do this both financially (with your help) and physically be able to do this now. My doctor feels my blood clots (DVTs) are under control, at least enough to be cleared to fly to Grand Cayman to get this amazing immunotherapy which will also work brilliantly with BEMER. I have shared this with the doctors at Perseus and they have cleared its use for me.
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