Friday, August 26, 2011

Treatable...uncurable - what gives?

The state of cancer treatment is still in its infancy. The big three modes (surgery, radiation, chemotherapy) are still the most used (and most toxic and harmful), even if mostly successful. The emerging treatment of targeted gene therapy and use of the body's own immune system to kill off the cancer (after first finding a way to "open the gate" to the cancer cell as it were), is still a long way from proving effective or creating a durable response. If you have an immune system cancer such as melanoma you are really screwed  - because if your body's immune system can't defeat the cancer or the latest therapies don't work for you (as is the case with Meagan), then you are buying time. And you have to use the old line methods (I hate to even call them "treatments") to control the cancer as long as you can.

In her last email Meagan made an observation that she had been given a little hope because we had been told the cancer was incurable, but then another doctor had offered an option which might help the cancer in her spine (the Tomo Therapy radiation treatment - which she has started). I don't edit or correct her emails - after all when it takes her 2-4 hours to write the darn thing who am I to play editor. It's the overall content and tone of her emails which count, not the details. That is among the many reasons I write this blog (but not to correct my wife!!). I am trying to do many things (it has evolved as this adventure has continued), some of which may be useful to people down the road when they become caregivers or cancer patients (probably most of us). Besides helping everyone understand the particulars of how Meagan is doing and her experiences, it is also to describe the impact on us as human beings and husband and wife, the medical processes and decisions, and the real life issues which come up when you are dealing with cancer.

So one point of clarification to her past email. We know that her cancer is incurable. There is the slimmest of possibilities that she lives long enough that some drug gets approved that she is able to take which will give her some long term durable remission. But drug approvals take a very long time. All the drugs in the melanoma development pipeline are targeting very specific genetic mutations, which we know she does not have - so there would need to be some new development of a drug in the near term and it would have to go through a very fast track process to be approved - which in rough terms would mean 2-3 years. She likely does not have even close to that much time. She is ineligible for any clinical trials due to her brain tumors and seizures - so she can't jump to the head of any line of research drugs.

She is aware of all this - even if she forgets or gets fuzzy on the details. She realizes that we are in a situation of tumor management - slash, burn or poison the tumors as long as you can to extend your life at as high a quality as you can. Those methods are not really treatments per se, they are methods to keep the disease in check in some way. So they are treatments without an expectation of cure. They do matter for sure. Because unchecked tumor growth eventually causes death - but before it does so it can cause a lot of debilitating effects. That is why the news we initially got - that the cancer had spread to her spinal column and that it was untreatable (not, in her words, "incurable") was so devastating, and why the emotional swing was so dramatic when we found out there might in fact be a treatment (the Tomo Therapy radiation to the spine) that would have some effect on the tumor growth there. It is why this last three weeks has been the hardest part of her life (because thankfully she doesn't remember anything about the stroke or craniotomy or seizures). Because once it is untreatable and you have to let the disease takes its course - then all that is available to you is pain management. If you are "lucky" you get the disease in a place that doesn't cause pain (such as the liver). Having cancer in the spinal column is a really bad draw of the cards (even if not all that surprising given the cancer is in her brain and it's all connected). Because the way it advances in the spinal column is by growing and putting pressure on nerves. That can cause many things, well before it advances enough to do you in. Like pain, and loss of body function below the area on which the tumor is impinging.

So we like this new "treatment". It offers the possibility of control of the spinal column cancer, in the area being treated. She also realizes this is only affecting the area under treatment - cancer could already be growing elsewhere in her spinal column or in her brain (we know it is growing elsewhere in her body too, but those areas seem benign for the moment). So what is likely going to be our schedule over the next number of months is rounds of scans and treatments. She will complete this treatment by mid-September. She then has a brain MRI scheduled as a thirty day follow-up to her last brain zappage. If they find anything they will treat it (zap it). Thirty days after the completion of the Tomo Therapy radiation they will do another detailed MRI of her spinal column. If they find anything, they will zap it.

So it's a cycle of scan and zap. She's already being poisoned - she is on the chemotherapy called Temodar. It's possible Kaplan might want to switch to a different one in a month or so - which is more toxic and has more side effects.

Her biggest concerns at this stage are loss of mind and pain. Continued zappage of the brain takes its toll (because as targeted as the Cyberknife is, they take a bit of margin, and that is loss of brain function). If the cancer really blooms there and she has to do whole brain radiation, that is a scarier proposition. We are hopeful the Tomo Therapy radiation controls the cancer in her spinal column because she does not do well on pain medication and it will make her loopier than she cares for.

So we are realistic about the nature of the disease. She understands possible paths, although does not want to think about them. Nor do I. She very much is trying to live in the now and appreciate and enjoy what she has - and going through a round of treatment that might be relatively benign is a good thing.

We knew she had malignant cancer the first of July of last year. At that time we thought she had breast cancer. It was almost one year ago - September 1st - that we got the call from Kaplan to tell us that it was not metastatic breast cancer (a tough enough battle but one which most women are winning) but metastatic melanoma. That meant that she had metastatic melanoma for at least the prior four months before the July diagnosis (she first identified the lump on her breast in April). So she has unofficially had Stage IV melanoma for over 17 months now. And still alive to tell the tale and we are not expecting anything imminent in the way of a near term demise. Believe it or not that puts her in the category of a long term survivor of this disease. Especially given that it is in her central nervous system. So we are grateful that she has made it this far. And that it appears we still have a ways to march ahead.

Which we could not do without the love and support of all our family and friends.

No comments:

Post a Comment