Sunday, July 17, 2011

my recovery

Here's my own personal 'top 10 list' of what I believe led to my eventual recovery. I'll write more on each topic in upcoming posts, but here's a summary. Remember that all cancers, cases and 'cures' are entirely unique to each individual. This was me:
1. attitude / approach - I wasn't in denial, but I wasn't going to die. I was and am pretty stubborn. My state of shock actually helped give me some detachment. I studied as much as I could and asked a lot of questions, taking (often very) disappointing answers with a grain of salt, a wince and a whatever. I trusted my doctors, but was aware of their limitations, as luckily most of them were too and I respected that honesty. I kept a very open mind (as to options) while being fairly skeptical – of the good and the bad news. I maintained a sense of humor and tried to spread as much cheer as I could. My late-night non-alcoholic beer parties are still the talk of the hospital. 

There is absolutely nothing to be gained from a negative and hopeless attitude – in fact, there’s everything to lose. Nothing has more impact on your life (or death) than your approach to it, your attitude, your worldview, the way you express and internalize it – your two-way filter. If you think you’re going to die, you probably will. If you have to constantly convince others that you’re going to live, you’ll eventually convince yourself. One rises surprisingly to new challenges, you find the strength – there isn’t much choice. That said, a positive attitude can’t be forced, acted or pretended, it has to be real. You need to have a brave mind and not just a brave face.

2. the love and support of friends and family - was really overwhelming and I spent as much of my time consoling them as the other way around. It really helps, if you let it. People came out of the woodwork in Prague, from all over the world and from my distant past. I was showered with ‘good vibes’, ‘positive energy’ and the odd prayer. Even my cat took more interest in me and literally wouldn’t leave my shoulder whenever I was home – a ‘laying on of the paws’, as it were. I had many more and much better friends than I’d ever imagined – it was a real revelation and a huge and much needed boost. Very simply, I couldn’t have made it without their support – I wouldn’t have had the ‘attitude’ that I did without it. I am eternally grateful to the point of shame. I love you all and will never forget what you did for me.

3. reduction of phenylalanine (and tyrosine) in my diet - it's an essential amino acid (a building block of protein) and so not entirely unavoidable. Run from the artificial sweetener, Aspartame (NutraSweet, Equal, etc.) - it's cancer food, especially for any pre-existing melanoma. I cut down on meats, eggs and soy (not that I ever ate much soy), but had also been taking supplements of that crap for years – even after the operation. Finding out it promotes tumor metastasis, was a bit of a shocker.

4. Elimination of all avoidable sugar except the odd (and often even) beer, although I drank nealko (non-alcoholic) for several months. Sugar is cancer fuel (as it is for other cells). As radioactive glucose is used in PET scans to detect cancer, it should come as no surprise that cancer ‘likes’ sugar and lots of it. Starving tumors (and yourself) of sugars and carbohydrates reduces their rate of growth.
5. medical marijuana - a friend first made ‘pot milk’ for me when I was trying to quit smoking (anything) in order to get through chemo. In retrospect, I can’t see how anyone can go through chemotherapy without some form of cannabis - except maybe by taking multiple pharmaceuticals (with mixed and limited results) for each side effect (nausea, appetite loss, insomnia, pain, anxiety and depression, etc.) that further stress the liver. It’s no secret that smoking cannabis alleviates many of the unpleasant side effects of chemo, but ingesting it is by far a better option. I’ll expand and expound on this subject in the next post, but even the National Cancer Institute of all institutes apparently now agrees with me: 

"The potential benefits of medicinal Cannabis for people living with cancer include antiemetic effects, appetite stimulation, pain relief, and improved sleep." and:

"Cannabinoids may cause antitumor effects by various mechanisms, including induction of cell death, inhibition of cell growth, and inhibition of tumor angiogenesis and metastasis. Cannabinoids appear to kill tumor cells but do not affect their nontransformed counterparts and may even protect them from cell death. These compounds have been shown to induce apoptosis in glioma cells in culture and induce regression of glioma tumors in mice and rats. Cannabinoids protect normal glial cells of astroglial and oligodendroglial lineages from apoptosis mediated by the CB1 receptor."

6. Many excellent doctors and nurses – the care I received in Prague was of the highest standard most of the time. Doctors were very blunt and for that I was grateful. The nurses were kind, but firm and often hilarious. I donated all of my flowers to the nurses' station, which endeared me to them - it's a tough job and it's nice to feel appreciated. I had little trouble organizing appointments or obtaining medical records – often on the very day the tests were taken. 
7. Herbs and supplements – I think I pretty much tried them all, but what I believe actually helped most were: curcumin (a powerful antioxidant I got from Ageless Cures), a good multi-vitamin (‘Mega Men’ from GNC and others), additional 'Ester C' 1000mg / day, and 'ImuFit' (beta-glucan).

Additionally, but somewhat sporadically, I took: extra zinc, kelp (for radiation exposure), milk thistle (silymarin – to prevent liver damage from chemo and from the stress of all the other supplements), shark cartilage (prevents angiogenesis in tumors), Omega 3 (fish oil), Vitamin E, Beta Carotene, Co Q-10, selenium, N-acetyl L-cysteine (NAC), as well as ginko biloba on occasion.

Antioxidants run counter to most chemotherapy regimens, as chemo works by actually creating free radicals and interfering with cell DNA / RNA. Antioxidants just pick them back up. Good thing I didn't have much faith in my chemo. Curcumin, however, can inhibit platelet production, so if your platelets fall well below normal (like mine did), hold off on it for a while.

8. Other dietary / lifestyle changes: I’ve been long-time lover of smoked and grilled meats, but gave them up in favor of salads (Homolka hospital actually has a great salad bar!). I ate lots of fruit and made crazy combo smoothies on a daily basis. I got rid of sugars and most carbs as mentioned above, eliminated fats and most dairy (milk products produce mucus - an environment in which cancer thrives). I started exercising to reverse the atrophy and regain the strength I'd lost to the extended and very sedentary hospital stay and the physical ravages of chemo. Exercise is also a great mood booster, releasing natural endorphins.

9. Chinese medicine – that’s right, I went whole hog, as it were. Dr.? Wang was very confident and comforting with his thick wizened accent in Czech, the cheesy Chinese elevator music and the wacky tree barks, roots and vetches I had to boil for hours and then drink. Lying in his office with acupuncture needles all over my face and head, while listening to the chuzak (Chinese muzak) was pretty much the only time I was able to relax and not think about cancer – I usually meditated and often slept for all of 20 minutes, which was a major accomplishment for me at the time.
10. Kombucha tea – My friend Milan made this for me from scratch. I think I drank about thirty liters of it, averaging three glasses a day. It tastes pretty foul, but you get used to it.
I'm happy to answer any questions regarding the above (or anything else for that matter!). Please feel free (and encouraged!) to question or comment. If you or someone you love has cancer, the sheer amount of (often conflicting) information can be too much to handle. Take it slowly and calmly, do your own research, examine your options and ask a lot of questions. Although easier said than done, the best thing you can do is to lower your stress level, which seriously 'stresses' your immune system. A very tall order (for someone with cancer), but a necessary step toward better health for anyone. Severe stress (although not always completely unavoidable) will inhibit your ability to achieve the 'attitude' necessary to overcome your cancer. If you can redirect and use that stress as a positive, motivating and productive force, you stand a much better chance of recovery.

Saturday, July 9, 2011


Reading this blog, one might get the impression that chemotherapy was responsible for my cure. It wasn’t and it almost killed me. If anything, I got better despite the chemo and not because of it. Still, I want to make it clear that when I write about cancer, I’m writing strictly about my own Cancer and my own experience. (the terms chemotherapy, cytotoxic (cell-killing) chemotherapy, and platinum-based chemotherapy are relatively interchangeable in this article, I am not referring to immunotherapy or more targeted oncological techniques).
the cytotoxicity symbol is haunting
Everyone has cancer at some point in their lives and everyone’s cancer is entirely individual. As I’ve written, I believe that cancer is an important part of the immune system: insulating vital organs from damage due to infection or repeated injury, as in skin (eg. from the sun) and lung cancer (eg. from smoking) or, in Lance Armstrong’s case, testicular cancer (from riding a bike for most of his life). What Lance fails to mention in It’s Not About the Bike, is the fact that IT’S ALL ABOUT THE BIKE. He very likely got his cancer from riding a bike. It doesn’t take a rocket scientist or an oncologist to make that connection – repeated bike-to-ball injury. 

Lance goes on to credit platinum-based chemotherapy (Cisplatin – which I also had) for saving his life, which it probably did. Testicular cancer patients respond very well to Cisplatin (see below). The track record for stage IV melanoma using current cytotoxic chemotherapies (and Cisplatin isn’t even approved for melanoma treatment in the US) is, however, very poor and even successive modifications to my own protocol have shown little to no improvement (link to a review of my combined treatment) and are not recommended, but very often prescribed. 

He even credits chemo for winning the Tour de France, which I can actually understand – having lost a lot of weight and gained a lot of muscle since the end of my own chemo hell. I may ride it yet, but chemo is not a fitness routine I could ever recommend to anyone.

This from the good folks over at Wikipedia:
“Chemotherapy is highly effective in some cancers, useless in others, and unnecessary in still others. Taking all forms of cancer together, people who receive chemotherapy increase their odds of living five years after diagnosis by about two percentage points (e.g., from about 61% being alive after five years to about 63% of them being alive after five years).  However, this overall rate obscures the wide variation. Cytotoxic chemotherapy produces much larger gains for some forms of cancer, including testicular cancer (about 40% of the men who live five years after diagnosis are alive because of chemotherapy), lymphomas (about 13%), and cervical cancer (12%). By contrast, chemotherapy is essentially useless in other cancers, including prostate cancer, melanoma of the skin, multiple myeloma, bladder cancer, kidney cancer, and pancreatic cancer: people who receive chemotherapy for these conditions are just as likely to die within five years as people who do not. Chemotherapy only slightly improves survival for some of the most common forms of cancer, including breast cancers (1.5%) and lung cancers (1.5%).”

This from the NIH regarding its effectiveness: "The overall contribution of curative and adjuvant cytotoxic chemotherapy to 5-year survival in adults was estimated to be 2.3% in Australia and 2.1% in the USA. To justify the continued funding and availability of drugs used in cytotoxic chemotherapy, a rigorous evaluation of the cost-effectiveness and impact on quality of life is urgently required."

Cytotoxic chemotherapy is just that, it kills cells - the healthy along with the ostensibly ‘sick’. Different cancers have different responses to chemotherapy and it generally works best on the faster-growing varieties, as they are ‘hungrier’ and take in more of the poison. But other rapidly-dividing cells, like red and white blood cells, platelets, the entire digestive tract, and hair are also early victims. This is why chemo patients throw up a lot, lose their hair and have weakened immune systems.

This is the only empirical evidence of my response to chemo:

During treatment, which consisted of five three-day cycles over four months, using Cisplatin, Dacarbazine (DTIC) and Carmustine (BCNU), I felt sick, tired, weak, nauseous, was puking constantly, had arms full of holes, a completely wrecked immune system, no platelets, was covered in bruises, and generally very miserable – an athlete’s foot infection could have killed me at this point.

Following treatment: severe muscle atrophy, busted and completely calcified gall bladder, shingles, enlarged prostate, peripheral neuropathy and allegedly progressive disease (all since cured). Another session probably would have resulted in permanent damage or simply killed me - the cancer and not the chemo taking the blame as it always does in these cases. As it is, I am considered a very rare melanoma chemo success story (duly reflected in the statistics); the chemo taking the credit for my recovery.

Chemotherapy is barbaric and amounts to torture. We’ll look back on it someday with the same disgust and disbelief as we regard trepanning and witch burning. The history of this highly-carcinogenic and counter-intuitive therapy is also not surprising if you’ve been through it - this (very plausible, but unsubstantiated story) also from Wikipedia:

Mustard gas was used as a chemical warfare agent during World War I and was studied further during World War II. During a military operation in World War II, following a German air raid on the Italian harbour of Bari, a group of people were accidentally exposed to mustard gas (there stockpiled by the allied forces) and were later found to have very low white blood cell counts. It was reasoned that an agent that damaged the rapidly growing white blood cells might have a similar effect on cancer. Therefore, in the 1940s, several patients with advanced lymphomas (cancers of certain white blood cells) were given the drug by vein, rather than by breathing the irritating gas.”

Mustard gas was prohibited under the Geneva Convention (since 1925, mind you), yet it is somehow legal and desirable to give it to people intravenously who are dying anyway. Considering all of the advances in medicine since the ‘40s, cytotoxic chemotherapy remains largely unchanged. Carmustine (BCNU) – by far the worst of my chemo drugs is derived from mustard gas. The first chemotherapies for melanoma used phenylalanine mustard – the connection with phenylalanine somehow known, but not carried over into a product label warning for phenylalanine or NutraSweet, as reported earlier.

I read somewhere that 96% of cancer patients don’t actually die from cancer. I don’t know if that’s true, but I wouldn’t be surprised. I also read that 80% of oncologists would not choose platinum-based chemotherapy if they themselves had cancer – again, no real surprise there. The 'response' statistics from clinical trials and their eventual highly-paid rubber-stamped regimens are misleading and fraught with inaccuracy, misdirection and misinformation. 'Response' to a therapy is in no way associated with 'survival'. Patients who are termed 'unevaluable' are often those who died during the treatment and are removed from the statistics - or worse, counted as having 'responded' to it. If you had enough Carmustine, you could destroy every cell in your brain (they've actually done this with rats) including the cancer. You would have 'responded' to the treatment, but at the obvious cost of your life. Article here.

When making the decision of whether to go the chemo route or not, it is important to educate yourself as much as possible. Research the drugs to be used, understand the potential side effects (temporary and permanent) and the survival statistics - but take those statistics with some skepticism. Weigh carefully the risks and benefits and realize that the doctors may be offering you chemo simply because they have nothing else in their arsenal. Or for worse reasons. Look for alternatives – they exist and I’ll list what I believe helped me in the next post. Your health is your survival and the choices are always yours.

The only therapy that will ever work for you is the one(s) that you actually believe in. Lance is alive and I’m alive – the difference is that he’s alive because of chemo and I’m alive despite (or even to spite) it. Either way, I’m happy for both of us.