So I have cancer. Please help me live.

November 4, 2011 10:34 AM

So I have cancer. I have Diffuse B-cell Lymphoma that started out in my face and emerged initially as a Stage 2 tumor in my mouth (rare). I had an 85% chance of full cure and was cancer free for 1 year and 2 months until...

It decided to give me brain cancer that messed me up but *really* good (almost killed me). I am actualy writing this from the hospital. I've beat this round as while my particular cancer is rather aggressive it is a totally a pussy (which reminds me of every bully I've ever met).

Which is really cool. *But* I have a 50/50 chance of recidivism in 2 years and I want to minimize it.

So I don't deserve to be here anymore than anyone else but I desperately, desperately want to stay. Please help me maximize my chances of sticking around giving me your personal experiences, observations, internet fu (searches), old wives tales, overheard in new york ideas. I want to hear them. I really, really, really do.

Many thanks in advance.

posted by gnash to health & fitness (30 answers total)

You're a brave person. I could not relate in the slightest, but I think attitude will have a lot to do with how everything plays out from here. Good luck.
posted by amazingstill at 10:37 AM on November 4, 2011 [4 favorites]

I like crazysexycancer for the nutrition--diet being something you definitely can control (though you are probably already on top of that). It's also a community of people with cancer and positive support. Best of luck to you!
posted by marimeko at 10:44 AM on November 4, 2011 [1 favorite]

American Cancer Society: Stay Healthy
posted by grouse at 10:46 AM on November 4, 2011 [1 favorite]

Keep doing whatever it is you are doing that helped you beat the first two rounds! I don't have specific advice but you are obviously incredibly tough mentally and physically so please as well as everything else- keep that up!! You sound amazing!
posted by bquarters at 10:52 AM on November 4, 2011 [1 favorite]

A few years ago, while I was working at a funky little shop, another store owner came in and we hit it off - she had the West End version of our East End store.

We kept up a bit, and I "picked" for as well as shopped the store for some time, and over the course of a year, I heard her story. She had cancer, and was fading, but at one point got mad when she thought "But, but...there were all these things that I wanted to do with my life!" She recovered enough to pursue a particular dream: To open up a little store with all the things she'd been collecting for years. So, she got a month-long lease on a little shop, and opened up a pop-up shop. Wow - forget about her dream - it was mine! I loved it.

It was so successful that she was able to keep it going for well over a year on a month-to-month lease. She curated it like an installation, as she said. After some time, the store ran its course and she moved on to focus on other things. When I inquired the day before it closed whether her cancer had returned, a glance let me know, that yes, it probably had - but what a kick in the pants that was when it spurred her on to materialize one of her dreams. So, whether or not this is the most helpful thing, I would say that I wish you all the best, and that I hope if you have any dreams you want to make happen, that you find and get what it takes to do so. Would something like that keep your will to survive going strong? In any case, I wish you only the best.
posted by peagood at 10:57 AM on November 4, 2011 [12 favorites]

Get a second opinion from Dana-Farber Cancer Institute in Boston to make sure you're getting the best possible care in every way.

If Boston's not convenient, there are other cancer centers around the country (e.g. Sloan-Kettering) that undoubtedly offer similar services.

Good luck to you!
posted by alms at 11:07 AM on November 4, 2011

Might be silly, but it seems to be working. I am using Maritime Pine bark serum (pyncnogenol) (in conjunction with CEENU/CCNU) for my cat that has cutaneous t-cell mediated lymphoma. He is, right now, doing well. I have heard of human cancer patients using it as well. Good luck!
posted by bolognius maximus at 11:07 AM on November 4, 2011

Seconding Dana-Farber.
posted by ryanshepard at 11:13 AM on November 4, 2011

IANAD, IANYD. In the vain of an old wives tail my Dad when he was fighting lung cancer that has spread to his pericardium pretty much mainlined berries, green leafy veggies, Vitamin C and red wine.

Blueberries, Raspberries and the like, anything with a dark colour where his berry of choice. He was going for the phenel something or others in them as his theory was they helped fight cancer. Wheat grass shakes and lots spinach and he liked to get his Vitamin C from oranges/fresh juice.

He was given 6 months and no odds of ever being clear and he lasted another 2 years before a secondary problem took him. As I said anecdotal, and unscientific, but he lived in Australia where berries are like $5 a teeny punnet and he'd eat 2 or 3 of those punnets a day (about 1 US punnets worth) and he always credited them on keeping him going. I think he just drank the red wine because he liked it though.

Good luck.
posted by wwax at 11:59 AM on November 4, 2011

I highly recommend Anticancer, by David Servan-Schreiber, who is an MD PhD who was diagnosed with brain cancer and told by his doctors that he could do nothing to improve his chances of survival or a good outcome. He ignored them and then wrote this book as a result of his research. It's a great book.
posted by holympus at 12:13 PM on November 4, 2011 [1 favorite]

Someone close to me was diagnosed with skin cancer and after treatment, it never returned. This after a doctor suggested his lymph nodes be removed, and another suggesting chemotherapy. One, more open-minded doc recommended surgery only and this book:
http://www.amazon.com/Full-Catastrophe-Living-Wisdom-Illness/dp/0385303122/ref=sr_1_1?s=books&ie=UTF8&qid=1320434243&sr=1-1

He credits his survival to this book, as it showed him how stress undermines the immune system and how to fix it. He was diagnosed almost 20 years ago, with no recurrence.

Good luck.
posted by Atrahasis at 12:21 PM on November 4, 2011

You're awesome. Keep kicking cancer's ass.
posted by pised at 12:35 PM on November 4, 2011 [1 favorite]

I don't know about old wives tales, but here's a few suggestions:

- Cut all sugar and refined carbohydrates from your diet - if you read the literature on sugar (http://www.nytimes.com/2011/04/17/magazine/mag-17Sugar-t.html?_r=2&ref=homepage&src=me&pagewanted=all - essentially - one key to avoiding cancer, which might be a different thing, regrettably, than preventing it, is to restrict foods that stimulate a significant amount of insulin secretion – not just sugars, in this case, but other refined carbohydrates and starches as well because the cancer uses the refined sugars in your bloodstream to grow)

- consider a raw food diet that emphasizes wheat grass. Anne Wiggemore had a great receipe book and a good program which focused on the use of wheat grass both drinking and via enema (as it gets absorbed by the colon very throughly). When my mother had breast cancer, she followed the diet and the cancer did not reoccur.

- other things that may be effective against cancer are misteltoe extracts (http://www.cancer.gov/cancertopics/pdq/cam/mistletoe/patient/page1), infrared saunas (the idea is that the infrared light kills the cancer in the upper layer of the dermis), and oxygen (the idea is that cancer is aneraerobic, thus super oxygenation would create an unfavorable environment for the cancer)

On a more personal note - I admire your energy and I know you can and will make it through this. My thoughts and encouragement are with you.
posted by zia at 12:45 PM on November 4, 2011

Here is the Ann Wigmore book: http://www.amazon.com/Recipes-Longer-Life-Ann-Wigmore/dp/0895291959
posted by zia at 12:48 PM on November 4, 2011

I had a rare brain tumor in 2008 that turned out to be cancer. Details of which are on my blog.

Sounds like you're done with treatment. Congratulations, and I sincerely hope you don't have to go through it again.

I've got 2 1/2 years under my belt of no cancer. What's worked for me is:

* Eating as many healthy, home-prepared meals as possible
* Make the healthy choice as often as you can (cut out soda, watch the sodium, etc)
* When you make an unhealthy choice (and it's okay if you do), enjoy the hell out of it
* Exercising
* Making a list of questions/symptoms before I go to the doctor for a checkup
* Avoiding negative people/situations as much as possible. Life's too short to sit around bitching about it.
* Appreciating the hell out of the small things -- a good song, a great cocktail, petting a dog, hearing a kid laugh. All of those are gifts. Treat them as such and be present.
posted by Atom12 at 1:44 PM on November 4, 2011 [7 favorites]

In April, after ten years clean I was dx'd with recurrence of breast cancer for the 4th time. Today, November 4th (one month after surgery, 2 months after finishing chemo for the 2nd time) I was "de-staged" from Stage 3 to Stage 2.

You and I know that you are, right now, in a parallel universe. It is bizarre and foreign and it sucks (there is NOTHING sexy about cancer) but it's not your identity. You are in the land of the sick, but you are still you. Don't wander around or get pushed around. You need to learn the new language, figure out the map, try to orient yourself (so you can be your own best advocate). Ask questions, challenge, push back, use your common sense, retain your dignity, speak up when it hurts, become an expert in what's happening to you.

And yet, don't get too comfortable in this new land. I have found that my best play is to compartmentalize/deny/dissociate as often as I can from the grimmest stuff -- of course, not to the point of being foolish or ignoring medical wisdom, but more like, OK, I'm gonna put my head down and push through this so I can get back Home. I absolutely REFUSE to over-identify with being a patient, a warrior, bald, a survivor, stage this or that, an inspiration -- ugh, no. I'm just me. And whatever this all was/is/becomes, I'm going to try and always find a way to protect the core of me. And get back Home, whatever that means.

You have a strong voice and you are already pushing ahead via this post. That comes right straight through in your question. Keep that going, amp it up, and good fucking luck. I'm betting on you.
posted by thinkpiece at 3:49 PM on November 4, 2011 [3 favorites]

And I like Atom12's list!
posted by thinkpiece at 3:50 PM on November 4, 2011

Good for you dude, you sound awesome! Just a word of caution; People tend to grossly misascribe the causes of their cancers. I'm not suggesting you're doing that, but I think it's a good reminder of what you can change, and what you can't. Don't fall into the trap of believing that if you just "think positive!", or eat a kind of treebark or whatever your odds of contracting cancer will go away.

I think society places a large burden on people with cancer to act and behave a certain way; when you have trouble adhering to those norms, you can be left feeling guilty, depressed, as if you're "not trying hard enough". That's all bullshit. You're allowed to feel how you feel without worrying if it's contributing to cancer.

I know you're asking for it, but unfortunately there is a lot of crazy woo-woo stuff associated with fighting cancer; desperate people willing to try everything plus shysters with magical thinking can really throw out some weird combinations. I guess I'm just saying, if you're ever tempted to, don't let the fact you're not following a certain suggestion make you feel guilty, anxious or afraid. Good luck. :)
posted by smoke at 4:00 PM on November 4, 2011 [13 favorites]

OK. I'm going to be a little bit of a downer here. NHL which has relapsed is generally not considered curable without a stem cell transplant. Involvement in the brain makes things harder still. If your treatment did not include this, please discuss it with your doctors. Request a consult at an excellent transplant center. And them get a second opinion at another center. Stay strong, stay positive, and help other people take care of you.
posted by SLC Mom at 4:05 PM on November 4, 2011

All I can offer is an anecdote and the cliche that keeping a positive attitude really does help: the anecdote is that I have a coworker diagnosed with Stage 4 Lung Cancer --- 33 months ago he was told that he probably had 12-20 months, max..... at this point, we're all joking that since he's WAY outlived that prediction, he's simply not allowed to die now.
posted by easily confused at 4:52 PM on November 4, 2011

As you said, aggressive tumors are wimps and fold more easily than the slow growing cancers. The weak link for most chemotherapy is cell division - aggressive tumors are dividing like mad and so they go down quickly, but cell division is not a luxury. This is why traditional chemo is so hard on the patient.

If there is a next round, the sooner you catch it, the easier the fight and if you're in the best physical shape you can stay in, you have a much better chance of dealing with levels of chemotherapy that will take down the cancer. So stay as fit and as healthy as you can and maintain vigilance.
posted by Kid Charlemagne at 5:12 PM on November 4, 2011 [1 favorite]

SLC Mom - good news, I am being treated @ Mayo and I get stem cell Nov 21!

For those in the know a depressing bit of news I was just told was if it comes back my 3rd round of treatments would simply be maintenance (i.e. I would *not* be able to get it in remission).

Is this true. If so 3x scared.
posted by gnash at 5:14 PM on November 4, 2011

Hi Kid

I am not sure what you mean by this, do you mind explaining?
posted by gnash at 5:15 PM on November 4, 2011

All,

Thank you *so* much for your considered and caring responses. I can't tell you how much I value and appreciate them. Please keep them coming.

David
posted by gnash at 5:16 PM on November 4, 2011

If you are doing any radiation treatment, miso might help. And even if not, hey, it's delicious!

Good luck. Sending you well wishes.
posted by librarina at 7:09 PM on November 4, 2011

Goddamn you inspire me. Long may you run.
posted by jcworth at 8:59 PM on November 4, 2011

David,

Don't know about the 3rd round info, but even if it gets to that point there may be options. www.cancer.gov/clinicaltrials is a clearinghouse of experimental treatments, and treatment options have expanded by leaps and bounds in just the last five years. My mother is a nine-year survivor of 4x recurrent ovarian cancer and my 38-year-old friend has had breast cancer twice in the last decade. Though the statistics were against both of them, they are still happy and mostly healthy, living life to the fullest every day.

From their experiences, I'm nthing what others said about diet, plus the validity of David Servan-Schreiber's book, the treatment possibilities with mistletoe, etc. Also, being an informed consumer with good docs who stay abreast of the latest research. Personally, I also agree with thinkpiece - cancer looms large in your existence right now, but it does not have to define you.

Best wishes and best of luck with your treatment. You sound like a person of humor, heart and eloquence (and perhaps you'll post updates of some kind after the 21st?). As jcworth so beautifully put it, long may you run.
posted by Kibby at 10:25 PM on November 4, 2011

The Jaminets, whose opinion I respect, have written an article on this.
posted by Earl the Polliwog at 1:29 AM on November 5, 2011

Cannabis has been shown to shrink tumors.

There is also the vast subject of mycomedicinals (medicinal mushrooms) which are 100% legal in the US in contrast to the cannabis. Mycomedicinals are generally not psychoactive, but have been used to treat all kinds of ailments and diseases in Asia for hundreds, if not thousands of years. A burgeoning industry to the whole world now and no, I'm not a principal.

Thanks for asking the question in the most open manner possible.
posted by telstar at 12:40 PM on November 5, 2011

I'd go to the TED website and watch any TED talks related to cancer or nutrition and then research the speakers to see if there is any further info.
posted by revan at 8:33 AM on November 7, 2011