Please help Susan tackle Triple Negative Breast Cancer
Donation protected
An update, and an important request for help
Dear friends
I have reached a major crossroads in my treatment, and I need to ask for your help.
As many of you already know, I have proven – for the time being, at least – to be completely allergic – to life-threatening levels- to all types of chemotherapy. Yet even after my recent double mastectomy, it has been made clear to us my very aggressive cancer – Triple Negative Breast Cancer – will be doing everything it can to recur and has already shown how aggressive it is at trying to travel up my lymph system. I therefore need to do everything possible to ready my body for the possibility of recurrence NOW - and I am asking for your help on my journey,
As most of you already know, my cancer treatments in January and February did not go at all as planned. The life-threatening allergic reactions to chemotherapy basically rule out any further treatment of that type, for the time being at least.
As a result, my medical team and I decided to bring my double mastectomy forward quite urgently, to 26 February. The surgery went well from a technical perspective, but of 27 lymph nodes removed, 16 came back cancerous, showing how aggressive the cancer wants to be. Moreover, there is a high likelihood that the cancer is still in the lymph system, waiting to grow. Radiation will help tackle that issue, but my team and I are aware that my body simply doesn’t behave like other peoples, and we need to make some much more innovative plans on how to tackle it.
I have made the decision to try, as hard as I can, to give myself the chance to be cancer free for as long as possible using both mainstream, traditional treatments (chemo, surgery and radiation) as well as a whole range of complementary treatments.
Therefore, on 2nd May I will be undergoing a very intensive three-week residential course of treatment at an integrative cancer practice called Hope4Cancer, in Cancun, Mexico. I have met and talked with other patients who have been there, my own oncologist and from my main MD here in the US. All are supportive. I realize many people may think that Rob and I are crazy, but we have taken wide advice, as well as conducting our own research and meeting people who have already attended the center.
I will stay in Mexico for three weeks, getting non-toxic treatments six days per week by their MDs and oncologists. They will send me home with ongoing treatment. I will go back to Mexico in August for testing and treatment adjustments. I will go back again three to six months later for further tests and adjustments. I will have my oncologist in Charleston to continue with treatments (including radiation) and scans as per normal protocol there. I absolutely believe in my heart that the most likely way for me to get better is to mix to two worlds of medicine together.
The goals at H4C are twofold. I want to be absolutely clear that I have absolutely no expectations around any “miracle cure” occurring. I am not looking for one, and Hope for Cancer is not offering one.
Instead, there are three main goals to my treatment:
1. To keep the cancer from returning by fixing the ‘terrain’ of my body. That means reducing toxins, removing heavy metals (I am full of platinum apparently, so my value may have gone up!) and greatly improving my immune system. There are literally dozens of complementary treatments that can help meet this goal, including nutritional training, oxygen therapy, UV light treatments, high dose vitamin infusions as well as several leading-edge immunotherapy treatments that are being trialed in the US.
2. My second goal is to fix the terrain in my body so that I can get the very best results possible from my upcoming radiation treatments – 16 days in a row that I am not at all looking forward to, but I can at least go into with the best chance possible.
3. Third, and equally as important as keeping cancer at bay, it to get my body ready for a series of exposure testing/therapy to chemotherapy, an innovative new program that is being run by the Dana Farber Cancer Institute in Boston. I am exploring testing that can be performed to figure out whether my “new” body will tolerate chemo, which chemo drug(s) would be most suitable for me, and at what does. This is absolutely critical to any future treatment, but I have work to do to get my body ready for that program. This data will be absolutely invaluable for my oncologist here in Charleston.
There are still many doors to explore. My goal before opening those doors is to get my body strong and healthy. I am humbled and blessed with all the love that has come our way over the past six months.
I am choosing to go to Mexico BEFORE the cancer comes back in the hope that it will not. And if it does, I hope to be able to tolerate treatment. We have already received amazing financial support to help pay for most of the costs of the Mexico phase, which will end up being in advance of about $65,000, all said and done. But we also know that the remainder of 2024 is going to be equally intense, and the out-of-pocket costs we are facing are already in the tens of thousands of dollars. Rob is pulling out what little hair he has left – we reached 50 unreimbursed medical claims with our insurers this week.
While I never thought I would be the one finding myself in a position to need to do so, we have decided to launch a GoFundMe to help with ever-mounting costs. If you are able to help, in any way, we would greatly appreciate it. We set a goal on gofundme because we had to – but the truth, any help we receive will be hugely appreciated, and we have no idea what our costs will eventually end up being.
Many thanks and all of our love, and thank you for being on the journey with us. We couldn’t do it alone, its too big and scary.
Susan and Rob
Organizer
Robert Thomas
Organizer
Mt. Pleasant, SC