PD-1 seems to be in the news a lot lately as a target for immunotherapy. Anti PD-1 therapies known as Pembrolizumab or Keytruda are able to block the programmed cell death protein that keeps the immune system from going after cancer cells. Before visiting the Hallwang clinic, they sent my tumor tissue to a lab and it was tested for EpCAM, MUC-1, PD-1 and several other tumor associated antigens that can be targeted with different therapies that are not available in Canada right now. Eventually, I believe these tests will be done at diagnosis the same way ER, PR and HER2 are tested today but it will take time.
Right now Keytruda is approved by the FDA (Food and Drug Administration) for malignant melanoma and non-small-cell lung cancer but is just starting to be used in clinical trials for breast cancer. Luckily those like me that don't qualify for the clinical trials or have 10 years to wait around for it to be approved as a first line therapy for breast cancer, have other options. At the Hallwang clinic they are able to use Keytruda to treat women that are PD-1 positive. Unfortunately it is costly but worth it in my opinion given that breast cancers positive for PD-1 carry a worse prognosis.
In many cancers, PD-1 is over expressed on tumor cells and tumor-infiltrating immune cells. When these join together, they form a biochemical "shield" protecting tumor cells from being destroyed by the immune system. Tumors can co-opt PD-1 to their own advantage to fly below the radar of the immune system. By using a blocking agent against PD-1, we can interrupt that shield protecting the tumor from immune destruction.
If you have been recently diagnosed, you may want to ask your doctor about whether they can test for PD-1. It has been suggested that anti PD-1 immunotherapies can be especially effective in triple negative breast cancer because ER-negative breast cancers typically have a higher density of tumor infiltrating lymphocytes than their ER-positive counterparts. TNBCs also have a higher mutational load compared with their ER-positive counterparts, and have been proposed as a mechanism for increased immunogenicity.
Saturday, 15 October 2016
Monday, 19 September 2016
Hyperthermia
While in Germany, I tried whole body hyperthermia. Hyperthermia is a cancer treatment where the whole body is heated to a high enough temperature that it can damage or kill cancer cells. The maximum temperature used is dependent on the clinic - at Hallwang it was 40 degrees celsius or 104 degrees fahrenheit. From what I understand, other clinics might go to 43 degrees celsius but a sedative is used so the patient is more or less asleep for the procedure. At Hallwang, you are wide awake for the whole thing which scared the crap out of me at first.
To start, you sit in a hot bath to gradually bring up your temperature. Then, once it is high enough, you move into a tent with heat lamps that reminded me of an incubator. Thank god your head pops out the top so it is not affected by the heat. The nurse stayed in the room the whole time, monitoring my heat rate and blood pressure every 15 minutes or so. They also give you fluids to replace the massive amounts that you are losing by sweating profusely.
After spending 45 minutes to an hour in the incubator, the sides are folded on top of you to make a sort of body bag which you stay wrapped in for another hour. Now that I am typing this, the whole process sounds like some sort of cruel and unusual torture but really the worst part of it was my anxiety over needing to pee after all of these fluids had been pumped into me. Luckily I was able to hold it but the nurse did offer to put a diaper on me if needed, haha.
Unfortunately whole body hyperthermia is not available in Canada. Some Naturopaths or alternative medicine clinics might offer local hyperthermia which is done with a machine that treats a specific area. This can be effective on a tumor but if you are trying to treat circulating tumor cells like I am, whole body hyperthermia is the only option. I found that a lot of people at the clinic had not tried it but it is something I would definitely recommend. Call me weird but I actually enjoyed it...maybe not the treatment itself but the feeling you have after is unreal, like you have just sweat out every single toxin in your body.
Many people go to clinics in Germany for this treatment alone or it can be even more effective when combined with other therapies. This video gives a good overview if you are interested: https://www.youtube.com/watch?v=qGzXCS-UbVo
To start, you sit in a hot bath to gradually bring up your temperature. Then, once it is high enough, you move into a tent with heat lamps that reminded me of an incubator. Thank god your head pops out the top so it is not affected by the heat. The nurse stayed in the room the whole time, monitoring my heat rate and blood pressure every 15 minutes or so. They also give you fluids to replace the massive amounts that you are losing by sweating profusely.
After spending 45 minutes to an hour in the incubator, the sides are folded on top of you to make a sort of body bag which you stay wrapped in for another hour. Now that I am typing this, the whole process sounds like some sort of cruel and unusual torture but really the worst part of it was my anxiety over needing to pee after all of these fluids had been pumped into me. Luckily I was able to hold it but the nurse did offer to put a diaper on me if needed, haha.
Unfortunately whole body hyperthermia is not available in Canada. Some Naturopaths or alternative medicine clinics might offer local hyperthermia which is done with a machine that treats a specific area. This can be effective on a tumor but if you are trying to treat circulating tumor cells like I am, whole body hyperthermia is the only option. I found that a lot of people at the clinic had not tried it but it is something I would definitely recommend. Call me weird but I actually enjoyed it...maybe not the treatment itself but the feeling you have after is unreal, like you have just sweat out every single toxin in your body.
Many people go to clinics in Germany for this treatment alone or it can be even more effective when combined with other therapies. This video gives a good overview if you are interested: https://www.youtube.com/watch?v=qGzXCS-UbVo
Friday, 16 September 2016
Hallwang
The time I spent at Hallwang tested me both physically and mentally. First of all, it is not an easy place to get to from Canada. A direct flight will take you into Frankfurt or a stop-over will get you to Stuttgart which is a bit closer. The location of Hallwang is beautiful...in the black forest, surrounded by big trees, nature and a tiny town. A 10 minute walk will take you to to a 2.5 km barefoot trail through forest and meadow which is truly spectacular. Unfortunately there wasn't much time for hiking or day trips a) because some of the treatments made me feel very ill and b) you are at the clinic every day for at least 3-4 hours.
We stayed in a town called Freudenstadt which is about 12 minutes away by car. It seemed as though most patients stayed at the clinic, however, that is much more expensive. Although the food is very good at Hallwang, I also liked the option of going out to different restaurants for dinner every night. This meant we had to rent a car but it was relatively cheap and allowed some flexibility.
The first day consisted of a quick tour, physical exam with one of the Oncologists, a blood draw that included 20 vials, and some infusions for liver and kidney support, antioxidents and vitamin C. It doesn't take long to settle into the regular routine which for me included showing up around 9am, having blood drawn, getting a concoction of infusions to support my immune system and then either an immunotherapy, hyperthermia or ozone therapy in the afternoon.
They are very flexible about what time you start and what treatments you have. On the first day I expected to receive a schedule showing what I would be doing for the duration of my stay but I came to learn that there are no set schedules at Hallwang. I like a plan so I ended up making my own little calendar to keep track of everything. This also ensured that I was able to fit everything in as some treatments like hyperthermia are only available on certain days.
One thing I quickly noticed is that the staff at Hallwang are some of the most caring people I have met. There was no rushing you out of the room because they have other patients to see, all of my questions were welcome and the Oncologists provided thoughtful answers, when I called with a problem I was not re-routed to a call centre but rather a nurse answered right away. It also does not have a hospital-like feel. To be honest, I expected to see a lot of really sick people who have run out of options in their home country walking around in hospital gowns. It was not like that at all! All of the patients were so open and willing to share their stories about how thankful they were to have found such an amazing place that gives hope to so many people. I am certainly thankful I found it!
We stayed in a town called Freudenstadt which is about 12 minutes away by car. It seemed as though most patients stayed at the clinic, however, that is much more expensive. Although the food is very good at Hallwang, I also liked the option of going out to different restaurants for dinner every night. This meant we had to rent a car but it was relatively cheap and allowed some flexibility.
The first day consisted of a quick tour, physical exam with one of the Oncologists, a blood draw that included 20 vials, and some infusions for liver and kidney support, antioxidents and vitamin C. It doesn't take long to settle into the regular routine which for me included showing up around 9am, having blood drawn, getting a concoction of infusions to support my immune system and then either an immunotherapy, hyperthermia or ozone therapy in the afternoon.
They are very flexible about what time you start and what treatments you have. On the first day I expected to receive a schedule showing what I would be doing for the duration of my stay but I came to learn that there are no set schedules at Hallwang. I like a plan so I ended up making my own little calendar to keep track of everything. This also ensured that I was able to fit everything in as some treatments like hyperthermia are only available on certain days.
One thing I quickly noticed is that the staff at Hallwang are some of the most caring people I have met. There was no rushing you out of the room because they have other patients to see, all of my questions were welcome and the Oncologists provided thoughtful answers, when I called with a problem I was not re-routed to a call centre but rather a nurse answered right away. It also does not have a hospital-like feel. To be honest, I expected to see a lot of really sick people who have run out of options in their home country walking around in hospital gowns. It was not like that at all! All of the patients were so open and willing to share their stories about how thankful they were to have found such an amazing place that gives hope to so many people. I am certainly thankful I found it!
Saturday, 6 August 2016
Germany - Here I Come
After many hours online and speaking with various medical professionals, I have made the decision to seek further treatment in Germany at the Hallwang clinic. This was not an easy decision by any means but one I felt was necessary for a few reasons:
- My latest circulating tumor cell and Oncoblot test results were less than stellar
- The natural supplements and therapies I have been doing at home are proving to not be enough
- A recent study presented at the 2015 San Antonio Breast Cancer Symposium showed that adding capecitabine to adjuvant therapy reduced the risk of disease recurrence by 30% and prolonged survival by 40% for patients with residual breast cancer following neoadjuvant chemotherapy and surgery. Although it sounded like a promising alternative for me at first, I chose not to pursue capecitabine for several reasons:
- Participants in the study were Japanese and Korean and according to my Oncologist, their genetic make-up is different so they may metabolize capecitabine differently leading to a potentially different response. Although the results of the study are very encouraging, it is also just one study and more need to be performed.
- My Oncologist would not prescribe it for me for the reasons above which would have left me buying "black market" capecitabine...an option I was not thrilled by.
- Even though it is "lighter" than AC-T, it is still chemo and does have side effects and toxicities to boot.
Monday, 25 July 2016
European Cancer Clinics
If you are looking for information about the European cancer clinics, I recommend the Inspire website. Although there are a lot of clinics in Europe that offer treatments not available in Canada, based on reviews posted by Inspire members, it seemed that Herzog and Hallwang had the most success. Other clinics that I have heard about include Kleef in Austria which I didn't investigate based on some mixed reviews online and Paracelsus in Switzerland which seemed to focus more on alternative treatment and less on immunotherapies which is what I was interested in.
I started by contacting the two German clinics by e-mail and giving them a summary of why I was interested in visiting the clinic along with my medical history. I heard back from both within 24 hours which was very impressive considering I have made urgent calls to my Oncologist at home and it takes longer than that to get a response.
In terms of treatment recommendations, both offered whole body hyperthermia and complimentary treatments to support the immune system but I found that Herzog was much more focused on chemotherapy. Right away they recommended a moderate dose of chemo which made me nervous given that I have already been down that route and it was not as effective as it should have been given that blood tests show I still have cancer cells floating around in my body. On the other hand, it also seemed like an aggressive course of treatment given that I am in remission, meaning that there are no signs of cancer on my PET/CT scan.
It's so hard to be in this grey zone where circulating tumor cell tests indicate that malignant cancer cells are still present but whatever is happening in my body is microscopic and too small to be detected on imaging. Having said that, it could always be worse and I am thankful that whatever is happening was caught in this "grey zone" and not when it is potentially too late.
In terms of cost, Herzog was around 30,000 EUR for 3 weeks of treatment which I understand is the typical length of time you can expect for your first stay at one of these clinics. Luckily for me, my parents have offered to pay for the treatment so cost did not factor into my decision. The main things I was looking for were treatments that were evidence based, supported my immune system, had been successful for others with triple negative breast cancer.
After contacting Hallwang, I found that they met that criteria. Their treatment recommendation did not include chemotherapy but instead they wanted to test my tumor tissue for tumor associated antigens which would help determine which immunotherapies would be successful. This personalized approach made the most sense to me but unfortunately it comes at a cost. The testing alone was 3,800 EUR which is about $5,500 CAD. A number of different immunotherapies were available based on the results of the screening and when you add in the complimentary treatments, bloodwork and daily rate, they came to around 50,000 EUR for 3 weeks of treatment.
The question I'm sure some people would ask is why spend all of this money when for all intents and purposes, I am cured? I have done everything Western medicine had to offer, my last scan was clear and I have no physical symptoms. This would be a difficult decision for many but seemed pretty clear to me. My decision to pursue additional treatment was based partly on intuition and the fact that all of my research had led me down this path for a reason but also the fear of this cancer coming back. The fact that I am young, my cancer was triple negative, had spread to my lymph nodes and I had residual disease after chemo puts me in a high risk category and I am willing to do anything in my power to lower, or better yet, eliminate that risk.
Tuesday, 19 July 2016
Circulating Tumor Cells
CTCs are cells that a primary tumor sheds into the bloodstream or lymph system and these are the cells that can form metastasis, even after the primary tumor is removed. They can potentially play an important part in disease progression which is why many clinical trials have begun tracking them. I have seen a few clinical trials now that are designed to show whether there is a link between the number of CTCs and people who's cancer recurs versus those that remain disease free.
Even though this concept of CTCs is new in North America, it is something that has been done for a number of years already in Europe. Maintrac, which is the lab that did my chemo sensitivity testing, also measures circulating epithelial tumor cells and is one of the methods that can be used to track them. Cell Search is another system that measures CTCs and is the only one that is FDA approved. From what I have read, the number of cells detected by both systems can be drastically different which is why it is good to pick one and stick to it. The reason I chose Maintrac is because they claim to have the most sensitive CETC counting system in the world. They do not "touch" or extract the cells so this way no cells are lost when being processed. That is why the number of CTCs they report will be significantly higher than Cell Search. They also do not work with cut-offs to determine prognosis, only an increase or decrease in cell numbers. Cell Search on the other hand uses ≥5 CTCs as the cutoff for unfavorable prognosis.
Although it is approximately $350 each time you test, to me this seemed like a good way to gauge what was happening in my body post treatment. Unfortunately, rather than seeing a decrease in cell numbers which is the desired outcome, the two tests I have done showed an increase in cell numbers. I did one post radiation as a baseline, another 3 months later and in that timeframe, the cell count more than doubled. Fortunately this was caught early which is the intention of monitoring CTCs but these results together with the positive Oncoblot are a clear sign that I need to take action now.
Even though this concept of CTCs is new in North America, it is something that has been done for a number of years already in Europe. Maintrac, which is the lab that did my chemo sensitivity testing, also measures circulating epithelial tumor cells and is one of the methods that can be used to track them. Cell Search is another system that measures CTCs and is the only one that is FDA approved. From what I have read, the number of cells detected by both systems can be drastically different which is why it is good to pick one and stick to it. The reason I chose Maintrac is because they claim to have the most sensitive CETC counting system in the world. They do not "touch" or extract the cells so this way no cells are lost when being processed. That is why the number of CTCs they report will be significantly higher than Cell Search. They also do not work with cut-offs to determine prognosis, only an increase or decrease in cell numbers. Cell Search on the other hand uses ≥5 CTCs as the cutoff for unfavorable prognosis.
Although it is approximately $350 each time you test, to me this seemed like a good way to gauge what was happening in my body post treatment. Unfortunately, rather than seeing a decrease in cell numbers which is the desired outcome, the two tests I have done showed an increase in cell numbers. I did one post radiation as a baseline, another 3 months later and in that timeframe, the cell count more than doubled. Fortunately this was caught early which is the intention of monitoring CTCs but these results together with the positive Oncoblot are a clear sign that I need to take action now.
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