Sunday, February 22, 2015

Alternative Treatments

Alternative treatments for cancer are not universal, just as "big pharma" treatments for cancer are not universal.  I have nodular melanoma (stage3b, invasive), and papillary thyroid cancer.  Every case is unique, every patient has a unique set of circumstances, they are not treated the same way - whether a patient approaches it with a doctors help or the "natural" way, or as a wholistic approach combining more than one theory.

I want to address this today as it is a topic that is often brought to my attention - as if I don't think about it enough myself?  Everyone has their theories and misconceptions about how to handle this scary beast.  And I know everyone wants to help, and I appreciate it!

A common thought about cancer is that it is all about tumours, shrinking them, removing them, some radiation and/or chemo and you're done, it's gone and you move on.  And hey, in lots of cases that is what happens.

Unfortunately though, more often than not, that is not the case.  Advanced cancer or metastatic cancer such as the one I have, is already in the lymph system, it may spread to an organ and cause a tumour or detectable lesion etc, or it may not.  It doesn't "go dormant."  It doesn't "go away."  It is here to stay.  That is a fact.

Invasive nodular melanoma, that is what I have... it is not hormonal, it's likely not genetic, it's not removeable, and it's not able to be monitored or tested for by bloodwork or iris readings or hair samples or other such tests; it is not visible until it shows up on a CT scan.  It is silent, that is how I got it in the first place - was feeling fine remember?? Chance.  That is the current known information and status of malignant melanoma.

I am not trying to be depressing or dramatic, I just feel the need to share with you what I have learned in the past ten months -  it is a huge situation.   I don't expect everyone to understand. 

I am learning through communication with fellow patients that they too had and experience from their friends and loved ones and acquaintances:  the comments and questions about "when it is all over," "when it is gone," "you are a survivor," "you will fight this" etc.  That may be true, we are currently survivors and we are fighting it, but sometimes it's just not that clear cut. 

That is one of the reasons I started this blog in the first place, was to share what I know, primarily to keep my family friends and supporters informed (because I like to write - and I am largely allergic to the phone LOL), but also to document my journey and work things through on "paper."

If you know what I know, then you may feel better about it, you may be more understanding or less critical, of me, or of the medical system, or of whatever it is that caused this stupid situation in the first place. Whether it be my sun-loving history OR conspiracy theories that big oil and pharmaceutical companies are poisoning our population OR a genetic mutation that just happened to pick me... we will never know.  But if I tell you what I know about MY case, you may understand better what is going on.

I know I had no clue prior to my diagnosis - I was always afraid of cancer.  My only fear in life actually, was to get cancer. True story.  But... I have had a couple of family members get it treat it and beat it, and they inspire me every day.  (even though I am poor at keeping in touch - I love you and I am grateful for your encouragement, I will be a bull in a china shop, I promise - also cuz I know you'll come up here and kick my ass if I don't!)  ;-)

It will be an ongoing battle, long-term, however that may be defined.

In any case, what I need to discuss today is the myriad of helpful advice I receive about things to try, in order to beat cancer.  I won't discuss each one in depth, geez I already blab on long enough... but I will give you the list of suggestions, and some websites I have found discussing each one.

I have cancer, but it is a specific, not relatively common type of malignant melanoma.  I can't stress that enough - they are all different, I do not have breast cancer or leukemia or toe cancer (although melanoma is common in the foot and I have a mole between my toes that we are keeping an eye on, oh yeah baby, I like to keep things interesting all right). 

I ran to my Naturopathic Doctor when I was first diagnosed, as I have always leaned to the "Green" side of things.  If you recall I did spend a few years as a dairy-free vegetarian (felt great on that by the way, except for the missing steak problem), I worked to bring awareness to environmental issues and support of the local food movement, I helped create a farmers market in the part of Cambridge where we lived for seven years, I am aware of the risks of wi-fi and electrical/cellular device usage (I even lost a friendship over that battle) - I am not as green as I once was, but I will bore you with that another time.

My Naturopath was extremely helpful and she continues to keep in touch, she even consulted with her oncology pharmacist colleague about my initial diagnosis and test details.  She has given me some great resources and tips - and of course healthy eating is at the top of that list, not a huge problem: I love kale and sweet potatoes and I avoid most sugar, eat my veggies and have increased my water intake tenfold.

In the summer of 2014 however, when I was faced with treatment options after my May 16th groin dissection surgery for melanoma, I had to sit down with my family and my pros and cons list.  I had three choices:
  1. Do nothing other than eat well, maybe Juicer time, take natural remedies and take my chances.
  2. Radiation and then one year of interferon therapy, the Canadian standard of care for stage 3 melanoma. 
  3. Try the clinical trial I was offered at Sunnybrook, which includes a new drug showing promise for treatment of stage 4 melanoma.  And take nothing other than that and what they prescribe.
After much debate and consultation and the painful month of July, I decided for the trial.  Fast forward, you know a bunch of it in between, but now I feel I have explained why I do not pursue alternative treatments at this time.

I am not allowed.  And that was my choice.  And it doesn't mean that I can't try the alternatives AFTER my trial treatments end in September 2015, it just means I can't right now.
For two reasons:
  1. They cannot assess the success of the trial drug if the patient is constantly messing around with other factors.  I can eat well, avoid stress, rest, do yoga and meditation, and consume supplements only if approved by them (except I do still take my probiotoics...technically they are contained in foods as well) 
  2. It is for MY safety.  Because part of the study is to determine long-term safety for the guinea pigs in the trial, they don't want me taking stuff that could potentially conflict or cause extra harm to my body, specifically organs such as the liver.  I am not permitted to take antioxidant supplements because they can stress the liver, and I am to avoid that while on the trial. Obviously that's why the limited alcohol as well, though I can eat as many blueberries as I want LOL - again, naturally occurring antioxidants are fine.

Throw the thyroid cancer on top of it all and you may understand why I am so bound by what my oncologists say.  I genuinely feel they are my best allies in this fight.  They have the studies to show me the statistics that are relevant to MY disease, the way it is working in my body, and they stuff they know about it.  I am thankful to be on the leading edge of information for invasive nodular melanoma, if I have to be in the pool then I'd better be close to the lifeguard.

Thank you to everyone for their suggestions, I will just throw them out here and you can look into them more fully if you wish.  I will be sure to keep you posted if and when the time comes that I choose to try them.

I will be keeping my eye out for melanoma-specific results from the research and claims on these: 

Marijuana/cannabis/THC - most commonly used for pain management but also lots of rumour about it curing cancer... I am not against it, just not the right fit for me at this time.

Circumin/Turmeric - again, I totally see the validity in the claims behind it, but it is a powerful antioxidant I cannot take at this time.

Oxygenated water/Oxygen/Hydrogen therapy - interesting but scary stuff, again, may be helpful with a combination of other factors?


Juicing/Veganism - love the idea, love love love it, but it just isn't practical for me at this time.

But this is still where I am at right now:

And hey, a week from now this could all change, the largest lesson I am receiving from cancer is that it is a roller coaster ride.  In the worst theme park ever.

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