Tuesday, October 29, 2013

Chemo Cocktails

Weeks ago Phil and I, our genetic counselor and an oncologist walked into a bar. Actually, we sat in a tiny exam room, huddled around the paper covered table while the doctor drew flow charts and game plans.  Not football, not Sorry or Risk, but the chemo games.

I have a tough time with a lot of the premises of cancer treatments. Most cancer treatments are like an amazing race- they try to kill off cancer cells faster than normal cells. Good in theory- but leaves you with a lot of unpleasant side effects- both short and long term. Many cancer treatments purposely cause damage to cells(radiation is a good example) which then creates a chain reaction of events to get the body to recognize and get rid of the bad cells.  Unfortunately a lot of these need the tumor suppressing super power of p53 that us mutants seem to lack- hence many chemos and radiation are unreliable for us. Sometimes they even make tumors grow faster in mutants. So not only do I need to consider the great big gamble of which chemo- I also have to take into consideration how it works.

So there we are- saddled up to the paper lined exam table bar- trying to chart a course to get me through this predicament. I am not your standard patient. I don't follow the one size fits all approach and they sure as heck don't fit me. So most women who have metastatic breast cancer have tried other chemo cocktails. I chose against chemo last time. It was recommended. BUT my logic was this- there are certain limits to the amount of chemo a body can handle.  I told former oncologist that I didn't doubt that we'd have future opportunities to chemo-ify me- my gut said not right now. We had clean margins, and no lymph nodes were positive - so I wanted to operate on the assumption that we got it all. That is a risk you take with cancer. You can't see the cells- they could be floating around. I weighed my options and I wasn't ready to do the chemo drill without a great big glittery flag of a reason. I now have that reason. And that reason still didn't make the decision any easier.

New Oncologist was given the brief on me- I make the calls. He doesn't even offer his opinion until asked- which I do a lot. His answers are honest and frank. That's how I roll. Two weeks after our cancer cocktail discussion, he calls to check on me. Not trying to rush me- but he knows I'm getting ready to leave town and wanted to make sure we had a plan in place- you know to make sure the right meds were ordered and ready.  I asked him to call an NIH doc for me to get another opinion. Actually a mutant sister absolutely insisted and knowing that I was going to be seeing her in a week's time and she would make good on threats- I needed to follow up. Never mind the calls I put in to family and friend docs as well as a few connections I've made over the years. I had every mutant I trust pooling experiences and research into a nice neat package and they even took an official vote on which treatment they would choose for me. All answers were the same. Bases were covered. The decision was taking shape. 

There are a few approaches to treating metastatic breast cancer. I know too much. I researched metastatic breast cancer when I was first diagnosed . I calculated the risk and effectiveness of treatments.The numbers suck. You can't look at those numbers. They suck. So day after day- I would try to find the magic answer- in some paper- any research article- obscure or recent that would be the best for me. I couldn't find it. I began to envy the patients who just show up and follow the protocol given by their doctor. But I also know that the way the system works is geared to the masses. My blood pressure would sky rocket, making me breathe harder and that would stir up the glitter wich was counter productive. I would steal time to take walks- I always think better when I walk. I downloaded some meditation cds one of my other favorite mutants sent. So as I walked and Bernie Siegal guided my thoughts- he also made some really good points. The one I needed to hear was- a seed that is paved over does not stop to consult scientific literature on survival probability of seeds that are paved over. It merely finds a way to survive. It was reminiscent of the period after Lily's diagnosis-me attached to the computer searching for answers that didn't exist until a good friend said- stop looking for the answer and go be a mom.  So there was my answer. I had to believe I was going to survive and that would guide the path to survival. The answer was definitely a cocktail.  Unfortunately Sam Adams Octoberfest wasn't going to fix this one.

Once I committed to that- I had to focus on the best way to achieving that goal. And somehow that puts me back at square one.  So I called and emailed and had a few heart to hearts with favorite mutants. And between our collective hearts and minds- I knew that I had exhausted the information- I had everything I needed- I just needed to make the decision. There was no epiphany, it ended up being that call from new oncologist that made me commit. I hadn't made a decision. I just had a lot of information. I could write a dissertation on the whats and hows. Ultimately what it came down to was a gut decision when asked a simple question by a doc who paid attention and followed up.

I have hormone and Her2 positive cancer.  Cancer feeds off of hormones like estrogen and progesterone. Some cancers are more sensitive to these hormones and if they are "positive" - hormone therapies that reduce these hormones can help stop the cancer. The Her2 protein causes cells to grow faster and some cancer cells are positive for too many Her2 receptors. This growth can be stalled by a monoclonal antibody called Herceptin. The Herceptin binds to the Her2 receptors and they can't send their signal. Recently a new drug called Pertuzumab came on the scene- it also binds to the Her2 receptors- just in a different place. Pertuzumab is pretty new- but other than cardiac effects- it and Herceptin are monoclonal antibodies- they bind to specific places. The good news in cancer therapy is that they bind to the cancer cells specifically- unlike traditional chemos that affect all cells. These monoclonal antibodies appeal to me because they are specific. Any damage to normal cells increases the risk of new cancers growing and getting by my faulty p53. I decided against using herceptin last year because sometimes it only works for a short while- I didn't want to burn it's usefullness before I really was sure I needed it.

The toughest part of my decision was the taxanes. Taxanes are a group of chemo drugs routinely used for breast cancer. They work with or without p53 function and don't seem to piss mutant p53 off like other chemos do sometimes. There are 3 different taxane drugs- each slightly different. My big question was which one works the best. Data is mixed. Everything just seems to depend on the person. 2 of the taxanes can only get into cells because they are mixed in a solvent. Those of you out there who worry about vaccines and the "extras" that might cause autism or other negative side effects can appreciate this. Many of the allergic reactions to these drugs are actually to the solvents- not the drug itself. Side effects are due to the drug. Years ago a compound found in the pacific yew tree bark proved to be effective in stopping cells from reproducing by stabilizing it's microtubules- cells can't live like that forever and these cells eventually die. Since cancer cells are rapidly dividing- this is one of the drugs that uses the theory kill as much of the bad as you can, before the good. The side effects happen when this drug affects other rapidly dividing cells- such as hair and nails. The mouth and GI tract also have rapidly dividing cells- so mouth sores- stomach upset- hair loss are the big side effects. I know there have been a lot of improvements in side effect management and hair grows back. The solvents bothered me. And then I read another mutants blog and she had reacted really poorly to one taxane and was put on another that used albumin(something in your blood) to get the taxane into the cells instead of solvents. I wondered why the medical community always starts at the most toxic first. I asked my oncologist about how effective it was comparatively and he said all taxanes had similar efficacy. So why couldn't we start there? Because protocol, trials- all that direct cancer care is systematic- it's like voting along party lines- that's just how it's done. Once I established he was game to vote for me and not along party lines- I knew we had a plan. 

I agreed to Herceptin,Pertuzumab and Abraxane. We briefly discussed stopping my estrogen production- this can be done by shots(yet more chemicals into the system) or by removing ovaries. I will take my ovaries out- they've outlived their purpose and right now just help feed cancer cells.The tricky part is timing it with treatments and potential decreased immunity. You don't want to be healing from surgery with a compromised system.Right now the shark closest to the boat is the cancer and we have to try and stun it. And like that we have devised a specialty cocktail just for me. It has been used in this combination before- it's just a bit non standard. Like me. And it's something I put my belief in and the best way to affect whether or not something works is to believe in it.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)