Diagnosed with Primary Peritoneum Cancer Stage 4 in February 2017. After recurrence I am now in need of more comprehensive treatment abroad.
Taranaki
March 2017: As my family and friends rallied around I began 18 weeks of chemotherapy; also due to a pleural effusion I had to have fluid from around my lung drained twice. 2017, this was not the start to the year I had envisaged. I along with my family had just got back from the most amazing trip to Europe. It had been many, many years since we had travelled there and for my parents and other relatives they hadn't yet seen our youngest 6 year old daughter. On my return to NZ I launched myself into study, I was determined and ready that this was the start of my Social Work degree. However my body had other plans and whilst out on a bike ride I realised all was not well. My inability to breathe under exertion was worrying. A visit to the GP and referrals for chest xray and spirometry were sent to our local hospital. Unfortunately five days later I am in the Emergency Department as I cant catch my breath. Here after an xray it's discovered I have a pleural effusion and for the first time the word 'cancer' is mentioned. After a chest drain and another day of tests I am sent home; the message is that my markers are up but they cant determined where my cancer is. A week later and after a laparoscopy and a consultation it results in me being told I have Stage 4 Primary Peritoneum Cancer. Being honest I didnt even know where that was, I waited until I got in the car and asked my husband Jim; my anxiety was through the roof. So I began 18 weeks of chemotherapy, every Thursday. I became very unwell but with my little knowledge of cancer and chemotherapy I was just happy to be receiving treatment; Carboplatin and Paclitaxel. So I started the hair loss, the sickness, the insomnia, the fatigue and lack of motivation. But I became one of the happy statistics; 85% of us, all clear. In July once I was clear I started a ketogenic diet, being proactive and reducing the sugar from my body. I also started the Care Oncology Clinic protocol of using off-label drugs to try to keep my blood sugar as low as possible. The statistics were against me, primary peritoneum cancer has a 95 % chance of returning and I didnt want to be on the wrong side of that statistic. I called it the Danger Zone, I had to get 6 months clear under my belt and then I could kick on. Unfortunately in November 2017 I started to notice difficulty with my breathing again whilst out riding my bike. Two weeks later I was back in hospital having a chest drain, where they took 6.5 litres of fluid off. Since my initial diagnosis I had spent some time doing some research. This lead me to a book called 'Tripping Over the Truth' and a conference in Baltimore. I took my very good friend with me, Stacey and our learnings and interactions with patients, scientists, nutrionalists and Doctors was to be invaluable. It made me question the status quo and to explore the options around a more holistic approach to my cancer; the need to protect and build up my immune system whilst making the envirnoment the cancer lives in unbearable and then attacking it. The issue being to access this treatment I have to travel to Thailand to a clinic called Verita Life, it supports my ketogenic diet and the off-label drug protocol. It also offers a multi-dimensional approach to attacking the cancer. Building up my immune system using dendritic cell therapy, killing cancer cells with IPT, low dose chemotherapy and hyperthermia also using IV Vitamin C, curcumin and garlic. Before this even begins I need a PET scan, the local hospital agree this would be the best test to understand the status of my cancer however I do not meet the funding criteria and can only have a CT scan. I have been offered second line treatment of a drug called Gemcitabine this has a 20% chance of working plus an unfunded drug called Bevacizumab (Avastin) which would potentially add another few percent to the 20%. Rough cost estimates put this drug at approximately $40,000. However both these drugs in combination have a high toxicity. I believe my BEST chance is to optimise my immune system and make the current envirnoment for my cancer as painful and stressful as possible. Verita Life have the specialist skills, knowledge and expertise to make this happen hence my request for your support in this individualised treatment plan for me. I understand that my treatment will be for 6-8 weeks and I will be under going treatment for 5-6 hours a day. Thank you for spending time to read my story and thank you for your support. Also I have three children a 17 year old, 14 year old and a 7 year old. When I got diagnosed I made a promise to myself that I would see my youngest daughter into adulthood, she's 7 now so 'what ever it takes' I will be there. Also one of my goals is to campaign for better holistic treatment for all people diagnosed with cancer.
While I am well enough I want to do as much as I can hence setting up this page.
Use of funds: PET scan. Travel; flights to and from Thailand. Verita Life Clinic costs; blood tests, IPT, low dose chemotherapy, IV infusions, oral medication and all other tests and treatments as deemed necessary. Treatment plan will be finalised once PET scan has been completed so I do not have the full costings. Accomodation as it is an outpatients hospital, ketogenic food.
Household costs as my husband wont be working whilst supporting me and our family. Jim, husbands fights to Thailand.
Turkey Clinic; the other option 28 November 2017
Hi all, thought I would post an update as I have now had contact from Chemothermia a clinic in Turkey. This clinic was mentioned to me by Prof Thomas Seyfried author of 'Cancer as a Metabolic Disease' and main contributor to the book 'Tripping Over the Truth'. This clinic offers Metabolically Supported Chemotherapy (MSCT) which is their own modified version of Insulin Potentiated Chemotherapy (IPT) and used to increase the effectiveness of traditional therapies. They also offer Hyperthermia, Hyperbaric Oxygen Therapy, Oncology Diet and Special Infusion Treatments for example high dose Vitamin C, DMSO, Cesium, Selenium, Mistletow, Curcumin and a couple of others. Their treatment plan is different to Thailand in that they offer 10 day blocks of treatment then 10 days off and so on. Again until I have my PET scan, which is booked in for this Friday they are not able to tell me what my full treatment plan will look like. As soon as I get my treatment plans I will update on here.
Again thank you to everyone who has contributed and supported me with messages, donations and visits, to say I am overwhelmed with peoples generosity is and understatement. Regards Alwena
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