Another Option/Part Deux
There I was sitting in my Oncologists office feeling good about myself and expecting that all was well and that he would shortly tell me that he’d see me next year on my annual. The joke was on me. He had sent my cancer biopsy for Oncotype DX genetic testing to see how statistically virulent my cancer was. He hadn’t had a chance to look at it yet and we looked at it together.
His eyes got large as he looked at it and he told me that he certainly didn’t expect these results. My chance of recurrence in the next 5 years was 25%. I felt the nausea hit my throat and tears sting my eyes. It wasn’t supposed to be this way. I had done everything right, even paid for it out of my own pocket to prevent recurrence; it didn’t make any sense to me. He said that I would need to start Chemo immediately, that I have already waited too long. His fear and worry was clearly communicated to me and I could feel my heart beating double time painfully in my chest. I didn’t know what to say. I was totally unprepared for this.
Taking a breath I asked him what my choices were for Chemo. We discussed this for the rest of my visit. He then asked if I wanted to discuss this in more detail with his physician’s assistant. I said yes and asked him for a copy of the Oncotype to take home with me. Then they moved me to another meeting room to wait for her.
When I was alone I called my husband. I told him what had happened and he said that he would be there in a moment. He only worked down the street. I knew I was crying, I could feel the tears running down my cheeks but I was totally still too shocked to make a sound.
The Oncotype DX test is a genomic test that analyzes the activity of a group of genes that can affect how a cancer is likely to behave and respond to treatment. The Oncotype DX is used in two ways:
To help doctors figure out a woman’s risk of early-stage, estrogen-receptor-positive breast cancer coming back (recurrence), as well as how likely she is to benefit from chemotherapy after breast cancer surgery. You may be a candidate for the Oncotype DX test if:
a) you’ve recently been diagnosed with stage I or II invasive breast cancer
b) the cancer is estrogen-receptor-positive
c) there is no cancer in your lymph nodes (lymph node-negative breast cancer)
d) you and your doctors are making decisions about chemotherapy.
Most early-stage (stage I or II), estrogen-receptor-positive breast cancers that haven’t spread to the lymph nodes are considered to be at low risk for recurrence. After surgery, hormonal therapies such as an aromatase inhibitor like tamoxifen or arimidex are prescribed to reduce the risk that the cancer will come back in the future. Whether or not chemotherapy is also necessary has been an area of uncertainty for patients and their doctors.
My husband arrived and asked me what this oncotype test was. I didn’t know what to say to him. He asked what kind of Chemo I would need and what was it going to be like. I knew nothing about it and I had no answers on that either. We waited for the PA to come talk to us so that we could ask her these questions. As it turned out, she never showed. We waited for 45 minutes when a secretary knocked on the door and apologized for the error, that the PA had already left for the day thinking that she had no further appointments. I was irritated, but in the moment you don’t always see a blessing in disguise.
The following day I didn’t want to get out of bed. This was the first time I felt really depressed since my diagnosis. I thought that I could keep my equilibrium whatever happened. More fool I. It took me over the weekend to come out of the feeling of being out of control and hopeless. I finally realized that I was never in control, only G-d is. That’s when the feeling of hopelessness started to lift. I know that if I did my part, G-d would take care of the rest. I was ready to read through the oncotype data and try to figure out what it meant.
I called Genomic Health the next morning. After speaking with one of their researchers for over an hour, this is what I came away with. The size and the fact that this tumor was detected early and was removed had no bearing on the outcome. An estrogen and progesterone positive tumor with Her2 amplification had a 25% chance of recurrence in 5 years according to their statistical studies. I ask if having Cryo (since there was no chance a stray cancer cell escaping from the cryo zone) made a difference? For that he had no answer. I asked which kinds of Chemo treatments were more successful statistically? He told me to speak with my doctor. I didn’t really find him very helpful.
It was time for me to look at other therapies. It’s what I’m good at, I really could have used a breather, but I felt the pressure of another time crunch and got to work.
Where Am I Holding?
I started to think back to the beginning. I reviewed everything that happened to me since my family doctor came out of her office, gave me a hug, and told me it wasn’t good news in December of 2012. I thought about all the choices that I had made for treatments, and the doctors I was using. I knew it was time for a change.
Every time I went to my Oncologist my blood pressure would go through the roof. This was unusual for me because I’ve never really suffered from white coat syndrome. I started to ask myself why I so dreaded going to to his office. I always viewed my doctors as partners for my care. I never feared them. Even with a Cancer diagnosis (which is terrifying), I never saw my doctors in anything but a positive light. I finally realized that after 6 months of talking at cross purposes with my Oncologist, I wasn’t finding him very helpful. His excellent reputation aside, he had been doing this for a long time. I started to realize that he wasn’t really interested in anything I was adding to the conversation unless it was about my feelings in which case he was very warm and sympathetic. He intimated that he was too time pressed with patients to discuss any of the studies that I brought him in to review at length, but that he had looked at them. I’m not talking about newspaper or magazine articles, but scientific papers that I felt I needed his opinion on. I didn’t think that he actually read them because when I would bring up a point from them, he would ask me to refresh his memory and clarify. This was confirmed when he brought up something that he had read in one of the medical periodicals he had just received. It really irked me as he was telling me about it, because 6 months earlier I had brought him the study that the article was based on.
He was really pushing hard for me to start Chemotherapy which he felt I should have done months ago and was withholding Adjuvant therapies like Arimidex (an anti-estrogen) and Prolia (an anti-progesterone that is used for osteopenia) though he had sent me for bone density test to verify I had Osteopenia (pre-Osteoporosis). The problem was not that I was afraid of going through Chemo. The problem was that in the studies I was reading my understanding was that it would give me only a very small benefit for survival, less than 5%. He assured me that my benefit would be better than 35%. It made no sense to me how we could be so far apart in our estimations, but he was the expert.
Then I found a Mega-study out of Australia that looked at the ABSOLUTE survival benefit of all the chemotherapies done in the USA and Australia from 1990 to 2004 for 22 solid tumor cancers. It was exhaustive, it was definitive, it showed me that my absolute benefit for 5 year survival after treatment was 1.4% no matter what chemo was used.
It explained "relative benefit" (the term used by Oncologists and most published cancer articles and where he got the 35% number from) , as opposed to absolute benefit which was how long will this therapy would extend my life in real time (the only thing I was really interested in).
That was it. I was out of there. I needed a new Oncologist.
Promising New Treatments
The first really promising drug I found was called “Iscomatrix”. An adjuvant (additional) drug that was approved in Australia in 2007. An inexpensive Saponin based drug from a Peruvian tree that has been used as a veterinary adjuvant since 1951. It was too impure for human use and was problematic mostly because it was unstable and reactogenetic (it could produce adverse reactions) until they purified it and added cholesterol in 1989 (that was 25 years ago). It can be added to any antigen (disease) base (as an immunization) that enhances the body’s ability build resistance and to form antibodies. When added after a cryo procedure it causes an explosion of antibodies against your specific (cancer) antigen.
The punch line of this study is:
“In conclusion, our data demonstrate that anti-tumor immunity following cryo-ablation can be greatly enhanced by co-injection of saponin-based adjuvants. We showed that they promote adaptive immunity via an improved functioning of dendritic cells and increased CTL induction, making these adjuvants, and particularly Matrix C, outstanding tools to combine with in situ tumor destruction.”
What the study authors are saying is that Cryoablation with the addition of a Saponin based adjuvant causes the body to make such a strong immune reaction, that it’s like an in body vaccine against your specific cancer.
The problem is that even though Iscomatrix is available in the USA, the FDA has it locked down tight and it is only available for use in studies. Even though it has passed 10 years of human trials in Australia (not exactly a third world country) and is approved there. The FDA has to test it for another 10 years to the tune of hundreds of millions of dollars. The only thing I think that this will do is raise the price of the drug from affordable to unaffordable. I know that the company that makes it, CSL Berring, is building a plant outside of Chicago to produce this drug (I guess when it’s approved there will be a huge demand for it) and that the Factory in Stockholm is maxed out on it’s production.
(The FDA has done this before many times. One example is the drug Metformin which was approved for use in France in 1957. This is considered the best Type2 Diabetes drug out there. But it wasn't approved by the FDA till 1994, thirty-seven years later. Canada approved it in 1972 after the withdrawal of the other biguanides in the 1970s.)
There is something wrong with our medical system when it insists on doing things like this. A safe drug with just about no side effects doesn’t need to be retested like this. I think that this has more to do with Drug companies losing profit share and Oncologist and Surgeon losing business to Interventional Radiologists. Who would choose to put themselves through Surgery Chemo and Radiation when cryo and a shot of Iscomatrix would do the trick?
I tried for the better part of 6 months to find the distributor and get a dose for myself, but I was unsuccessful. Can you imagine what would happen if patients with solid tumors were able to access this promising drug? It would jeopardize the whole system. We already know that the system is flawed when drug companies can fast track a diet drug through the FDA with only two years of "studies" and then recall it a year later because it is problematic and dangerous. It's all about the big bucks and the access they have to Washington. But we can’t get drugs and treatments that are available to the rest of the world.
More Info on Iscomatrix:
My second candidate was also a new vaccine. This one is a anti-CD47. It comes out of Stanford in California and was dubbed by the Media as the vaccine that removes cancer’s “Invisibility cloak” from the Immune system. The problem with this drug is that it involves something that the human body makes. And the Supreme Court has legislated that you can’t make money making and marketing something that the human body makes. So no Drug manufacture will invest money to produce something that would be a big money loser for them. The FDA still wants $75 million dollars spent to do it’s trials, and my question is why isn’t the Government stepping up to pay the tab? They can waste a trillion plus dollars setting up a failed health care system that no one wants but can’t spend $75 million on something that might cure most cancers (and save the system billions of dollars). Trials start this summer if you’re interested. The only side effect they’ve seen with animal studies is some anemia. Take your pick of which study you want to read.
Below is the study and contact information.
Both of these promising options are currently unavailable to me, so I continued my search.
Cancer as a Metabolic Disease
Late nights and due diligence led me to the work of Dr. Thomas Seyfriend. Cancer as a Metabolic Disease. His work is based on the work of a turn of the last century bio-chemist, Dr. Otto Warburg. It took me months to work through his 60 plus page study and notations. See Dr. G. Eda's plain English overview "What causes Cancer", based on Dr. Seyfried's book, "Cancer as a Metabolic Disease".
I had found part of my answer. Something that made sense and was possible to do. The diet has been around almost 100 years and has been used in even very young epileptic children to control seizures where medication has failed (that's a very long safety record). Along with other adjuvant therapies, (including Metformin which inhibits Her2, Arimidex which is an anti estrogen and Prolia which is an anti progesterone) I am now treating my Cancer metabolically and consider these my "chemotherapy". It’s cutting edge stuff and I had to reach out to doctors and dietitians that are trailblazers in the field.
It’s really quite simple. Cancer lives on sugar. It has many pathways metabolically to get its needs met and proliferate. I needed to cut off as many feeding pathways as I could so that it starves (hopefully to death), while keeping my body healthy and immune system intact so that it can do its job (and hopefully be in top shape for when I can get my hand on a vaccine). This therapy isn’t a cure as far as I understand it. What it does is move cancer from a “deadly disease” to a stable chronic condition. It is much like Diabetes in a sense. Having Diabetes in the past was a death sentence, having it today isn't great but you can live a long and relatively healthy life with it.
Also I need a new local Oncologist. Back to work.