Harnessing the Immune System to Fight Cancer

An interesting read!

http://www.nytimes.com/2016/07/31/health/harnessing-the-immune-system-to-fight-cancer.html

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:

1. 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.
2. 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.
3. Even though it is "lighter" than AC-T, it is still chemo and does have side effects and toxicities to boot.

For these reasons, the immunotherapies offered in Germany seemed like a better fit for me rather than putting more toxins in my body and potentially making the cancer cells more aggressive and resistant. Of course, I believe that chemo is a necessary evil and do not regret my decision to do it the first time around but much of the most promising research lately has shown that immunotherapies are proving to be successful, especially with triple negative breast cancer. Unfortunately these immunotherapies like Keytruda are only available in clinical trials and very few are in Canada. Most are in the US and because I am still "in remission", I would not qualify anyways. It's too bad that I have to travel to another continent and pay out of pocket for these treatments but at the same time I am grateful that this is a viable option for me as I understand that for many, it is not. 

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. 

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.

Maintrac

Chemo sensitivity testing is something else I wish my Oncologist would have made me aware of. Did you know that different chemo regimens can be tested on your tumor cells? This testing can even be done before you start chemo to test the efficacy of the drugs being used. What a novel concept!

Before chemo, I was aware of the Oncotype Dx test which my Oncologist confirmed is only for women that are estrogen receptor positive to determine the aggressiveness of their cancer. I was told that because I was triple negative, AC-T was the regimen that worked the best and that was the end of the conversation. Unfortunately, even if my tumor was tested, I don't know if that would have changed the course of action. Our medical system is just not there yet but hopefully there will be a day where chemo is more individualized because people's cancers respond differently.

For example, my testing showed that Carboplatin which is a drug often combined with Taxol for women that are BRCA positive, was not effective. The response of my cells was 20% where the optimal response is 100%. Xeloda (also known as Capecitabine) on the the other hand was 85%. Other non-chemo therapies can also be tested such as mistletoe which is commonly used by Naturopaths. I tested two types of Mistletoe and got very different responses. Helixor was less than 10% and Iscador was 50%. Unfortunately I have been taking Helixor since completing radiation which is frustrating but I'm glad I did this test because who knows how much money I would have spent on something that was not effective. The effect it had on my body is also a concern because even natural therapies can have ramifications.

Since I received the results of the Oncoblot test, I have been gathering as much information as possible to help determine next steps and this chemo-sensitivity testing is just one piece to the puzzle. Unfortunately it is not cheap at approximately $500 per substance that you want to test but if you are able to afford it, this may be a good idea either before you start chemo or even afterwards if like me, you do not have a PCR (pathologic complete response) and are considering adjuvant chemo.

There are various companies that offer this testing. Mine was done through Maintrac which is a lab in Germany. I was able to have my blood drawn by my Naturopath and the sample arrived in Germany 48 hours later via FedEx.

Oncoblot

I have been neglecting this blog lately and unfortunately it isn't because I've had so much fun living my post treatment, cancer free life that I didn't have time. I wish I could say that. Nope, I have hit another bump in my road to recovery and that bump is called Oncoblot. The Oncoblot test, as described on their website identifies a specific type of protein in the blood, ENOX2, which exists only on the surface of a malignant cancer cell. The ENOX2 proteins are shed into circulation and can be detected in the blood. These proteins serve as highly sensitive markers for confirmation of cancer presence meaning that because my test came back positive, I still have malignant cancer cells in my body.

The main study that was done using this test can be found here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3901999/

Essentially they took 110 people with no signs of cancer, tested them using the Oncoblot and 40% were positive for the ENOX2 protein. This may seem like a lot but those are the statistics, 2 out of 5 Canadians (45% of men and 42% of women) are expected to develop cancer during their lifetimes. That is the sad reality of the toxic world we live in.

The positive part of this study was that after completion of 3 to 17 months of Capsol-T use, 94% of subjects subsequently tested negative for ENOX2 presence. This can be attributed to the fact that the Oncoblot detects cancer at such an early stage that in most cases it can be reversed by making lifestyle changes and using natural supplements.

What does this all mean for me? It means that the malignant cells still floating around in my body could be killed with the supplements that I have been taking or they could not. My need for control makes me want to do more to ensure that the next time I take this test it will be negative. At $1,700 each time, it better be negative....but how can this be done? That is where the hours of research come in, hence my absence from the blog.

For anyone who wants to take the Oncoblot in Canada, it can usually be ordered by a Naturopath. Just beware that your Oncologist will know nothing about it and because it is a test they do not routinely use, if it comes back positive, there is nothing they can do. Understandably, this can create a lot of frustration so be prepared before you even go there. I am glad I took it as it confirmed in my mind that some type of additional treatment is needed. What treatment is still to be determined.

Debating Between Mastectomy and Lumpectomy - Part 2

A few weeks ago I published a post that seems to be getting a fair amount of traffic about a lumpectomy versus mastectomy. Sometimes I make light of it but in reality this is a very difficult choice. I am the type of person that needs to research and have all of the available information before making a decision. For example, before going out to a restaurant, I usually look up the menu ahead of time and will still take forever to decide what I want. I am the one at the table asking for more time or debating between a garden salad or calamari while the waitress and everyone else sits there waiting. If it takes that much effort to choose an appetizer, you can only imagine what was going through my mind when presented with surgery options.

When making any life changing decision, I think a pros and cons list is in order! For that reason, I thought I would share mine, in case it helps anyone else with this impossible task.

Lumpectomy
Pros: 
1. Least invasive surgery.
2. Shorter recovery time.
3. No implant or further procedures needed.

Cons:
1. Chance that there could be unclear margins and a second surgery would be required (estimates show this happens for approximately 20-25% of women which was way too high for me). There is also some speculation that if the surgeon doesn't remove the whole tumor, they may break the perimeter and allow more cells to escape into the body.
2. Some studies like the one I posted earlier show that lumpectomy may not be as effective in younger women. Of course there are also other studies contradicting this.
3. My tumor was large relative to the size of my breast so a lumpectomy would have taken quite a bit of my breast tissue and the cosmetic result wouldn't have been great.

Unilateral Mastectomy
Pros:
1. Most breast tissue would be removed (according to the surgeon, there will always be some remaining so the chance of recurrence in the tissue is never 100% gone, just greatly reduced).
2. This procedure would give me the best chance at clear margins. An MRI before my last chemo showed residual tumor so this was especially important.

Cons:
1. Longer recovery time including a drain.
2. Tissue expander would be needed as I knew I did not want to be completely flat.
3. Cosmetic result isn't ideal.
4. Additional surgery later on to replace the expander with an implant.

Bi-lateral Mastectomy
Pros: 
1. Both breasts have an axe wound through them (ok, I'm over exaggerating) but at least they look the same.
2. If breast cancer can develop in one breast, it can happen in the other.
3. On message boards I have read about way too many women that either decided to have both breasts removed and a) the "healthy breast" ended up having cancer cells that were not detected on imaging or b) they developed a new cancer years later in the opposite breast.
4. Even though doctors say the chances of developing a new cancer in the opposite breast are only approximately 10-14%, they still have no idea what caused my cancer so I don't have much confidence in that statistic.
5. Women whose first breast cancer was hormone receptor-negative may have a higher risk of a second primary breast cancer compared to those whose first breast cancer was hormone receptor-positive. This risk was even greater for women who were initially diagnosed with HR-negative tumors when younger than 30 years.
* I also found this article in the Wall Street Journal about increasing numbers of women that choose a double mastectomy. It offers some interesting perspectives from both doctors and patients that I could relate to.

Con:
1. The physical and psychological effects of having both my breasts removed.
2. Two surgeries and going through the tissue expansion process twice.
* If I would have pushed back on the surgeon and asked more questions, the mastectomy and tissue expander insertion on both sides could have been performed in one surgery. This is why I stress being your own advocate!
3. Higher risk of complications.

There could be totally different pros and cons on someone else's list which is why surgery is such a personal decision. For example, I did not include my husband or anything to do with my personal relationship on this list as he was fully supportive regardless of my decision but I understand that can be a factor. Radiation was also recommended regardless of the surgery I chose.

Ultimately I went with a double mastectomy and am currently recovering from my second surgery. No cancer cells were found in my "healthy breast" but there were micro calcifications in the ducts which can suggest areas of increased activity in some breast cells. This finding could be an early indication of cancer that may have developed down the road or it could have remained completely benign and never caused any problems. For me, this was one of the factors reinforcing that I had made the right decision. At the end of the day, feeling confident that you have done the best you can is all anyone can ask for!