This is a question I get asked often by friends, family, acquaintances. How much longer will I have to be doing this medicine? How much longer will I be on the chemo? I find it so interesting that as a society we are always concerned with next steps. We want to have a plan and we want that plan to move forward.
I remember this being true, even from the very beginning of my diagnosis. People would ask me how long I would be on chemotherapy when they found out I was doing treatment. I think, more than anything else, it is just a question to ask. People want to be thoughtful and act interested, but cancer is such a complicated disease that it is hard to relate to the situation if you are not on the inside.
However, let me assure you that once you make it to the inside, you are overwhelmed with information. It is disorienting at first. It is like finding out you failed an exam you didn't know you took. Not only do you find out you failed, but that you failed most parts of the exam so you flunked in a major way.
What can be done to repair such a failure? I think the only thing that can and should happen is to spend some time thoughtfully purging the disease from the body and then rebuilding the immune system. Sometimes the damage can be extensive, sometimes not. For me, I think my fast metabolism got in the way when my cancer cells were traveling.
Remember that each cancer likes certain organs. Breast cancer likes lungs, liver, bones and brain. It doesn't mean that it doesn't travel to other organs, it may not park itself there and begin to grow a secondary tumor. I feel blessed to have known our game plan from the beginning, to know my disease was limited but that it was on the liver.
In general, my short term plan will be to do these meds until we do the next set of scans at the end of August. I am assuming that we will continue to see regression in the cancer and will probably continue on the meds until the next round of scans. KUMED is getting a trial that I want to get on in the Fall so that is on my agenda to push for...once we get my cancer on the liver to an acceptable regression. This acceptable regression is not only for my oncologist to decide, but I am a part of this decison, too. I don't get buried in the details of the cancer. I let him deal with that so my mind can stay strong.
The trial could provide a supercharged medicine to do the dirty work for me while my body won't feel the effects of a chemo. Don't get me wrong, I would do this chemo as long as it works, but they usually have patients do them for about four to six months and then switch things up.
The DNA of cancer is also pretty sophisticated, meaning it can learn to fuel itself with other means. Right now, the her1 and her2 proteins are shut off to the cancer by Tykerb and Herceptin. However, her 3 and her 4 could still be available. So, if we start to see growth, my cancer may have formed a resistance to the drug already by using these routes. It takes a while for that too happen, but it could happen.
So, what do we do then? Well, there is another miracle drug called pertuzumab that blocks of her 1,2,3 and 4. It is still in clinical trial, but I believe at some point, I will be on this drug...with other maintenance meds. I also believe this is the drug that will stabilize my cancer for good.
Why is that? Because my cancer is fueled by the her proteins, her 2 being the most dominant. If doctors figure out a way to shut that down as a path for good, then the cancer cells could become necrotic (aka dead). I think that is already happening in my body right now with the meds we are on and I just want to keep pushing forward with that plan. I have a strong will to live with a lot on my agenda. I am okay with living with cancer, but I don't want it to sideline me anymore.
So, you see, I am a walking science experiment. I have always been of the mindset that it took about five years to build this cancer in me so it will take about five years to stabilize it. My five year anniversary will be Jan 3, 2010. I plan on being here and celebrating in a HUGE way. Life is a celebration, that is one of the things I have learned from cancer. There have been so many nuggets of wisdom that I have learned.
As far as the answer for how much longer, I can't tell you when I will get off of this chemo...probably some time in the Fall. But, I will just transition to another medicine, probably the clinical trial for a year...then onto super maintenance meds. My life is filled with a lot of super things going on. Healing from a disease such as this is amazing. It humbles me every day. I try to describe the experience I feel in this blog, but I don't think I am capturing the beauty of what it really means to experience restoration. I think I will get better at at is I continue to feel my health is more restored. But I wish each of you wonderful health!
Blessings,
Lolo
Monday, August 4, 2008
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"What can be done to repair such a failure? I think the only thing that can and should happen is to spend some time thoughtfully purging the disease from the body and then rebuilding the immune system. Sometimes the damage can be extensive, sometimes not."
Good advice for ANYONE going through ANY kind of "DISEASE"! Your insightful words truly to transcend to much more than I think you even realize :) Glad you are back, feeling stronger and sharing them with us again this week!
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