posted by Amy on Jun 12

Yesterday at my metastatic breast cancer support group I said I have gotten to a place of acceptance about my cancer that allows me to keep it in the background most of the time. The facilitator asked me how I had managed to do that, and I said I didn’t know. Another member had a wonderful insight, though. She noted that both I and another woman who had expressed a similar sentiment had been through setbacks and had come out on the other side. Although my setback was quite minor compared to the other woman’s, it’s still true that we have both hit bumps in our road but are feeling better now, both physically and emotionally. In this and many other ways the support group is indispensable for helping reach acceptance and gratitude in the face of constantly-evolving circumstances. The same woman also pointed out once that at our age a certain level of disability and pain is par for the course, even for people who don’t have cancer. I don’t know what I’d do without this group.

I had a PET scan on May 15 that showed a little bit of cancer progression. Unlike the “almost perfect” PET from December 5, there were a few small areas that “lit up” in the presence of the radioactive glucose, including five areas that had not shown any avidity before. That threw me for a loop. I was sad, disappointed, scared and disillusioned at this news. I had been hoping against hope for a cure. No such luck, or at least not yet. That was a tough pill to swallow.

Of course then the next question is what to do. My oncologist was hoping I could get into a trial of one of the exciting new treatments that are coming online (see below), but I didn’t qualify. I ended up agreeing to participate in a study of a drug combination that is approved for some other, slightly different, circumstances than mine but has not yet been cleared as a second-line treatment. Both drugs are biologic, targeted therapies, not chemo. I’m already on one of them. Both drugs are approved, and the doses are agreed upon. I started the new regimen yesterday.

But in the meantime I reached an important realization. The level of cancer in my body is still quite low. It doesn’t get in my way at all. It doesn’t affect me physically. I have the same capabilities, the same energy level, the same sense of physical wellbeing I had before I knew I had cancer. If it never got worse than it is right now I would be fine. If it could be kept stable it would not be a problem. The inconvenience and side effects of my current treatment are well worth it. Right now, for me, cancer is a chronic condition with minimal consequences. I realize that “if it never got worse than it is right now” is a very big “if.” For now it’s enough for me.

This new drug combination (Lapitinib and Trastuzumab) could prove to be a “home run” for me. Even if doesn’t clear the cancer completely, I can live with it just keeping me stable.

To enter the drug study I had to have a biopsy, mammogram, sonogram, CT scan, echocardiogram, EKG, and blood tests. I also had to quit taking the hormonal treatment. The CT scan is dated three weeks after the PET that had showed progression. According to the CT, there was no adverse change since the PET. Three lymph nodes that “lit up” are so small they would not have been considered abnormal if not for the PET evidence. I’m happy about that. And I think it’s still possible that the puzzle of how to train my immune system to put this thing to sleep completely can be solved at some point. So far, even though I have an aggressive and deadly type of breast cancer, it is relatively well behaved for me.

Life can only be lived in the here and now. It is vain to live in regret or in fear. Right now I’m fine. Right now I can do what I need to do. And I hope and pray that whatever may come, I will continue to have the strength to meet it head on.

Here’s a short interview about TDM-1, a drug that uses Trastuzumab (Herceptin) to find cancer cells and then deliver a cytotoxin directly to them:

Dr. Kimberly Blackwell discusses TDM-1

And here’s an article about the other new treatment for HER-2 positive breast cancer, Pertuzumab, which just received FDA approval yesterday as a first-line treatment for metastatic breast cancer:

FDA Approves Pertuzumab, Herceptin, and Taxotere combo

 

 

posted by Amy on Jan 3

I get it. People don’t really know what to say about cancer, or what to do if someone they know has it. But on Christmas Day I asked those present never to say I lost my battle with cancer if I end up dying from it. If I were run over by a truck you wouldn’t say I lost my battle with the truck. I’m no warrior. I’m not brave. I take my pills and show up for appointments on time and lie still in scanners and let them put needles in my veins for various reasons, but that’s not courageous. I feel fine, and I’m pretty sure the cancer treatments are the reason. If I hadn’t cooperated with the treatment plan I might well be dead by now. What’s brave about that?

Maybe I’ll get to the point where, either because remission has lasted a long time or none of the treatments are doing any good anymore, I stop treatment. That might be considered brave. Maybe. Or maybe that will still be a simple calculation about benefits and costs, quality of life vs. the potential to extend it.

It’s not really a battle, either. As I said in an earlier blog post, cancer is us. It’s our life processes gone awry. Genes that are supposed to turn off fail to do so, or genes that are supposed to switch on don’t, but it’s really just a horrible biological mistake, not a war. Thinking of it as a war can lead to rash decisions or misunderstandings.

The question of surgery might be in that category. Back in the days of the radical mastectomy, surgeons got better and better at doing more and more disfiguring excision of  breast, lymph nodes, chest muscles–anything on the same side as the tumor. It turns out that was never the right surgery. Either the cancer had already spread to other parts of the body, and mutilating the poor woman had no effect on that, or it hadn’t spread and it was unnecessary to cut out so much. Statistically, women who get lumpectomies and have clear margins, especially if they also have radiation treatment, have the same overall survival rate as women who get mastectomies. So most of the time mastectomies are not necessary. The old style “radical” mastectomy (with radical referring to “root”) is always wrong.

For people who are Stage IV at diagnosis, it’s not clear that surgery has any effect on overall survival. There are not yet any controlled, prospective studies on that question, only retrospective analyses of various data sets. Those studies attempt to screen out confounding variables, but without having matched experimental and control groups you just can’t be sure. For example, women who didn’t have surgery might have been too sick to have it, and they’d have died either way, so they should be excluded entirely, but most of the time you don’t know enough to tell who to screen out. Surgery might actually be harmful. The original tumor might suppress the growth of the metastases, and if it’s removed they might flare up. It’s also possible that general anesthesia can suppress the immune system enough to exacerbate cancer.

I feel fine, mentally and physically. I am adjusting to this “new normal.” I don’t know what’s going to happen next, but at least I have been through eight months of things heading in a good direction, and that makes a big difference. When I was diagnosed I had no clue. I didn’t know how treatment would affect me physically and cognitively. (One of my aunts assured me I’d have chemo brain and assumed that my medical people didn’t tell me that. They did warn me that it might occur, but it didn’t.) I didn’t know if treatment would be effective. Now I have reason to hope I’ll achieve and maintain complete remission. There’s no way to be sure I can, but there’s also no reason to think I can’t.

You never know how much time you have. People die, sometimes suddenly. Cherish the loved ones in your life. Love your life. Be grateful for every breath. Be gentle with yourself and others. I am really too busy doing those things to do any brave battling. I’m just doing the best I can with what I have.

posted by Amy on Jun 3

Well, that didn’t take long. I joined an online support group for people with HER-2-positive cancer. I mentioned that I was Stage IV at diagnosis, and that I found that somewhat (understatement!) daunting. A member directed me to a thread someone started for members of the group to sound off if they’re Stage IV, and say how long they’ve been that way. That led me to some sites I found eye-opening.

Stage IV breast cancer is considered incurable. That makes it kind of an embarrassment in some of the “survivor” literature. Supposedly you have early detection, and you follow doctor’s orders, and you do your surgery, chemo and maybe radiation, and you lose weight and control stress and you become a cancer-free survivor. What do we do with people who don’t fit that profile? Well, according to a blog post I found, they are simply ignored. Not counted, not tracked, not much research money going into it. The whole post is here. But here’s an interesting bit from it:

METAvivor’s 5 MBC Misperceptions

Myth: Research funding is well balanced for all stages of cancer.
Reality: 90% of cancer deaths result from Stage IV cancer, but only 2% of research funds are devoted to stage IV.

Myth: Metastatic breast cancer is rare.
Reality: 30% of breast cancer patients progress to Stage IV. Many more initially present with metastatic breast cancer.

Myth: Healthy lifestyles, timely screening and early detection prevent metastasis.
Reality: Metastasis happens despite vigilance and precautions. Even Stage I patients can and do metastasize.

Myth: Metastatic breast cancer is becoming a chronic disease. Fewer die every year.
Reality: New treatments extend life for some, but survival remains elusive. Over 40,000 women and men have been dying annually since 1987.

Myth: Stage IV breast cancer patients are well supported by many groups.
Reality: Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to Stage IV.

I had melanoma in situ in 1999. The treatment was to cut it out, then to cut again to make sure there were clear margins. No one promised me it wouldn’t come back, or that I wouldn’t get it again. Yet after 12 years I’m pretty sure I can relax, except for wearing protective hats and clothing, and getting those annual skin checks. Not this time. I will never be considered a “survivor,” even if this cancer doesn’t kill me. According to this site, I won’t even be counted among those reported to have been diagnosed this year with metastatic breast cancer, because that was my initial diagnosis.

Statistics don’t apply to individuals. I have never let the odds against me keep me from going after what I want. I want to get well and stay well. I want to live well. But now I see sisters (as well as some brothers) who might need me to speak for them. This is a whole new arena to explore. (For a cool story about a 17-year survivor look here.)

I’ll be linking back to blogs and organizations dealing with metastatic breast cancer, and I’ll keep looking for articles and blog posts of interest. Don’t worry–it won’t increase my stress level. I thrive on this kind of thing.

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