Doing Well

New Treatment

I started the Eribulin about 10 days ago, and so far it's been going fine. I've just had two out of three weekly treatments in the first cycle, so I'm still feeling my way through it.

The effects feel minor at this point, and while I don't feel quite as good as I did on the Navelbine, it's a little early for me to come to any big conclusions about how I'm going to tolerate this regimen. Overall I'm aiming for being aware of effects without obsessing over every little thing.

Genetic Testing Results

I received results from the genetic testing I had, and the news is good. There was no mutation found in any of the genes on the High Risk Breast Cancer Panel. This includes six genes related to hereditary breast cancer - BRCA1 and BRCA2 (which we've all heard about and which I tested negative for in 2012) plus CDH1, PTEN, STK11 and TP53 (which I'm sure you haven't heard of yet).

Because there is no history of cancer on B's side of the family, and because I do not have these gene mutations,  M and C also do not have them. Hopefully that will mean a little less stress for them as they move into their 20s and 30s and are talking with their doctors about cancer screening.

Of course it may be that I have a mutation in one of these genes that current technology cannot detect. It may also be that my family has a mutation in a gene that was not included on this panel, or that there are multiple genes that in combination point to a higher risk of cancer in my family that have yet to be discovered.

Why?

We don't know why I developed breast cancer, and I'm past being bothered by that (you know, for the most part).  I'm a lot more focused on just living with this chronic illness the best way I can. And obviously I'm also focused on doing anything I can to help M and C (and their future children) learn about and minimize their risks for getting cancer.

One thing I've learned in the last few years is to take what I read in the mainstream media about cancer with a grain of salt. Most of the articles require some digging on the reader's part to substantiate the claim that grabs your attention in the headline.

For example, you may have read recently an article claiming that a new study shows that about 70% of cancers can be chalked up to "bad luck". Turns out not everyone agrees with this statement. This is a pretty good analysis of how good the reporting was and how tricky it is to synthesize studies for a mainstream readership, in case you're interested.

I don't rely on just one article in even the New York Times to inform me fully about an issue related to cancer. I check different sources and also ask my doctor.

New Photos

The Conservatory, where most of the photos on this blog were taken, is finally open after several months of remodeling. So I'm happy to have some new photos to add. For those of you who may be new here, the Conservatory is close to the medical center where I receive treatment and in 2012 during radiation I started visiting it almost daily. It's in my favorite city park.

I don't go as often as I used to, as treatment days are Mondays and the Conservatory is closed on Mondays, but it's still a special place I like to visit, even for just 10 minutes now and then.

Follow the Blog By Email

Just a reminder that if you want to stay updated with the blog, you can simply enter your email address in the box in the sidebar on the right side of this page and you'll receive every post. No more cruising by here to check to see if there's anything new!

New Plan Begins December 29

An angel from my childhood

I'm going to start the new chemotherapy plan December 29. The drug is called Eribulin, and I'll be receiving it as part of a clinical trial. It's already FDA-approved for breast cancer treatment; the study is looking at whether it's effective and causes fewer side effects given more frequently at a lower dose.

I'll continue to receive Herceptin infusions (fights cancer) and Zometa infusions (helps prevent bone fractures) while I'm on the study.

I'll be receiving treatment once each week for three weeks, then I'm off for one week. Then I start the four-week cycle again. After three cycles I'll have a CT scan to check on progress.

I stay with the study for as long as it's effective against the disease. Six months is a typical length of time. Then we look at the additional treatment options.

This drug is generally well tolerated. There are the usual possible side effects (low blood counts, fatigue, nausea, numbness and tingling in hands and feet), but it might be as easy for me as the Navelbine I've been on for six months. I'll just have to see.

It does cause hair loss, so that's a big bummer. A friend and I picked out a wig a few months ago, and I'll order that in January. Mavis, being long and auburn, just isn't me anymore. I've been short and blond for almost two years and I like it, so the new Mavis will be short and blond. This wig may or may not get a name - I'm not really at a point yet where I can feel whimsical and lighthearted about this whole wig thing. I'm not sure what I'll decide to wear on my head most of the time, but it's good to have a hair option.

Thanks so much for your calls, texts, emails, cards, etc. It means a lot to me to hear from you and know you're in my corner! I hope you understand if it takes me a while to get back to you. Always know that I welcome your thoughts for good ju ju or your prayers if that's your thing.

I'm going to return to putting some requests for meals on the Lotsa Helping Hands website (see sidebar if you want a link to that). If you're already signed up to hear about requests, you'll get something in your inbox within the week.

I hope you have very Happy Holidays! I'm looking forward to Christmas and two weeks off before I start the new treatment. I will definitely need something to look forward to in January, though!

CT Scan Results

I had a CT scan yesterday, and the results are mixed.

The good: most of the tumors stayed the same or shrank since the last scan in September.

The bad: the largest rumor in my liver grew, and my oncologist believes I've seen all the benefit I'll see from this chemo regimen.

I have an appointment with her December 15, and we'll review the options and pick a new chemo. There are several standard treatments to try, and I may qualify for a clinical trial.

I know I've kept these blog posts pretty basic and factual lately. That's just the phase I'm in, I suppose. 

I also know that people wonder whether to ask me how I'm feeling and engage me in a health-related conversation. I know it's hard to know what to say to me sometimes. Please know that I don't have expectations around what people "should" say.

I assume everyone in my life is wanting the best for me, and I'm not bothered if we don't have a direct conversation about that.

Sometimes I feel like talking about  my health. and sometimes I don't. I don't expect you to read my mind about that - I'm good at steering the conversation in a direction that works for me in the moment.

So yes, I want to hear from you and/or see you! And no, we don't have to talk about my health! And yes, it's fine if you ask after my health!

I don't want you to avoid me because you don't know what to say. Avoid me for other reasons, like I annoy you or you're tired!

A sense of humor is one of my most valuable allies. Sharing it with you is both fun and healing.

Doing Well

Just a quick update to let you know that I'm doing well.

I've been on the same treatment plan since my last post and expect to be on it a while longer. I feel good most of the time and am living my "normal" life.

I'll have a CT scan in December to check on things. My white blood count has been decreasing with each treatment (an expected side effect), and if it goes below a certain level I'll need to take a break from chemotherapy to allow it to go up.

Since I tested negative in 2012 for the BRCA1 and BRCA2 gene mutations, four additional genetic tests have been discovered that can show a higher risk of getting breast cancer. I just got my blood drawn to be tested for those and will learn in about three weeks whether I have any of those gene mutations.

If I'm negative, then my daughters will be negative for them too. That will be six genes they don't have to be concerned about.

If I'm positive for any of them, I'll learn what the implications are, and M and C could opt starting at age 18 to be tested for them. If they are positive, it will affect the decisions they make with their doctors in the future regarding what cancer screenings they receive at what ages.

I'm amazed by the advances in the cancer and genetics fields. There's such a long way to go, but there's also so much progress every year.

Good News

What a nice surprise - the CT scan I had Tuesday showed that the chemo is still working (contrary to what the tumor markers were telling us). The liver mets are still shrinking, and the other areas are stable.

So I get to stay on Navelbine + Herceptin for a while longer. I go in on Monday to start another round. A round is three weeks long - I have an infusion two Mondays in a row and am off the third Monday.

I'll still meet with the other oncologist next Thursday to talk about clinical trials and her take on standard treatments that are still available to me.

I've got several fun days ahead, and knowing I can stay with the status quo will make them even more relaxing!

The Only Thing Constant is Change

Well, it's almost time to switch to a new chemo plan.

I thought I'd write a quick update while in a waiting room because I'm so over Ladies Home Journal.

The labs I had done September 2 showed the tumor marker levels are not headed in the right direction. So Dr. N has concluded that the Navelbine + Herceptin has stopped being effective.

Here's what's coming up:

September 16 CT scan to see what's happening.

September 19 visit with Dr. N to talk about treatment options.

September 25 consultation with the oncologist at my area's major cancer research center (whom I met in March) to hear her ideas on standard treatments and clinical trials.

I'll probably start the new plan the last week of September.

I still feel good physically and am living my normal life. I did hit the pause button a couple of weeks ago on accepting new clients and am giving myself more breathing room in my schedule for taking care of myself (exercise, family, friends).

A lot of the time I'm in good spirits, and I'm leaning on family and friends on the harder days. 

I've got some fun social things going on in the near future, including a weekend with my college BFFs. 

The weather has been glorious for months, and I've loved every minute of it! 

Mixed Results

I do love a dahlia

I've been so busy living my regular life that I haven't written in a while. 

There hasn't been much to report lately. The navelbine chemo treatment I started a couple of months ago has been pretty easy and life's been smooth. I've been busy with work, and there's plenty to do at home and with friends this summer.

CT Scan

I had a CT scan to check on things yesterday, and the results are mixed.

The good news: Several of the liver mets are smaller. Yay! I haven't had this kind of good news since November.

The not-so-good news: The cancerous spots in my bones are larger and there are more of them. I don't even have a specific number. Let's call it several to many. They are in different places in my pelvis, spine and one in a femur.

The mystery: There's a spot in my lung that could be cancer but it's too small to tell. It's larger than it was in the last scan.

I don't have any pain. I'm very grateful for that. So all in all, it could be worse.

And it could be better.

The Plan

I will stay on this navelbine treatment for another two rounds (about six weeks) and then have another CT scan. Hopefully the liver mets will still be shrinking.

My oncologist says that especially as cancer spreads to other areas it may not all be responsive to the same treatment. She decided since it's very important to keep the liver mets under control, and that the navelbine has been doing that, we'll continue with it even though it is not shrinking the bone mets.

At the dahlia garden at my favorite park. You know, the one with the Conservatory!

How I'm Doing

Scan and results days are never fun ones. So my week so far has not been the greatest. But overall, I'm doing very well. The past nine months are some of the best in my life, and they've also been some of the hardest. Funny how it works that way.

I haven't been asking for much help lately for several reasons. One is that I've been feeling good most of the time, so asking for help feels strange. Another is that as long as I don't ask for help I can tell myself how well I'm doing and then that's not so depressing. And yet another is that even with the Helping Hands website up to make it easy, I still don't find it easy. I'll work on that.

In the meantime, we're going on a vacation in about 10 days to San Francisco, and I'm really looking forward to that. We're going to spend Labor Day weekend on a nearby island with old friends,  I've got a weekend lined up in September with my two BFFs from college, and time with sisters-in-law here right after that. It's always good to have fun stuff on the calendar!

I hope you are having a wonderful summer, and I'll keep you posted.