I want to just send out a quick clarification about my chemo because I can tell from messages I’m getting that I didn’t explain well what has happened with my discontinuation of Xeloda. This particular chemo is now failing, yes. But that doesn’t mean it didn’t work. This is part of this disease of metastatic breast cancer. In some cases the treatment option never works; that is, your cancer doesn’t respond at all. You get no benefit from day one. You abandon it quickly.
Mine, however, falls into the other camp: it did work for a period of time. It did what it was supposed to, just for not as long as we’d hoped. That is, it did reduce the amount of cancer in my body for a while, it did hold progression at bay.
It’s no longer doing that, my counts are very slowly rising, but that doesn’t mean it “didn’t work.” It just means it didn’t work for as long as I would have liked.
Most people with advanced disease will be leapfrogging around all sorts of agents (chemo, anti-hormonals, etc.) to try to see what works. The cancer mutates and becomes resistant to most treatments that will get used. That’s when it’s time to move on to a different one. I know people that have been on at least ten different agents. That leapfrogging is just the nature of the path many others and I are on. A small percentage find one that works and it continues to work for a long, long time. Research is needed to find out why these particular cancers are more easily tamed. We do not know now why that is the case but researchers are learning more and more about the subtypes.
So while the stability was not as long as we’d liked, in this particular case it doesn’t mean it didn’t work. It did. For six months. But now we’re moving on.
In my case, because my cancer is estrogen-receptor positive, we’re trying anti-hormonal agents. Although I don’t have ovaries to produce estrogen, the fat cells and adrenal glands in my body still produce estrogen. I will be taking two drugs every day now, Aromasin and Afinitor. The plan is in place and I’m already starting taking them, slowly on the Afinitor because it has a side effect of bad mouth sores if started at a full dose. I won’t go into other side effects here because I don’t know yet what my particular response will be.
Thanks for all of the notes of support and concern over the last 48 hours during the PET scan and this new adjustment. As always, I can’t respond to every message but I do appreciate them all.
Link to Twitter
You are truly inspirational, Lisa. I can’t imagine how tough this has been on you. We are all so impressed with how you pull yourself back up after a setback and courageously move forward again. Hoping the next drug will bring you a long period of relief. We are cheering you on. Thank you for letting so many learn and benefit from your openness.
Excellent clarification b/c I can honestly say that the leapfrogging with meds is something I was not at all familiar with. I know enough to know that there are many different drugs but I think I was under the assumption that if 1 was working well then it will always work on some level–at least for a few years. Perhaps I never really wanted to understand how metastatic disease is treated– maybe I couldn’t go there but I do appreciate you sharing it all. It’s very helpful to understand the complexities of all of it. Thanks Lisa. As always.. cheering u on from NC!
I’m realizing right this minute that cancer never takes a day off. Not even a minute. I’m ashamed for falling behind on the posts you so graciously put out for us to stay aprised of your treatment. A lot happened to you during the few days I wasn’t reading or using my computer. Your whole life changed again when I wasn’t looking and I’m humbled. I’m sorry.
Joanne, no apologies! Life happens for all of us. We all have our challenges. The beauty of the blog is that it’s there for whenever you have the ability to sit down and read. I know that life gets in the way sometimes… I’m glad for whatever time you can spend here with me.
Damn fat cells….;)
I cannot fathom how you have the composure and clarity to update your blog, twitter feed, etc. I do, however, thank you from the bottom of my heart for sharing it all. So many times I wanted to respond to things you have written with an “I know how you feel”, but I don’t know, not really. I do send you the most positive thoughts that I can muster and appreciate your candor. Thank you for every word.
Kandace, some days I do wonder myself! 🙂 Honestly, it’s all of the readers and followers like you who say that it helps, teaches, informs… this is my mission. Every time I get a tweet or comment that says, “thank you” it spurs me on.
Thanks for sharing.
Have you ever read The Body Silent by the anthropologist Robert Murphy? Your candid perspective and amazing ability to demystify this disease resonates with his own attempt at doing so. You may find it interesting. Thanks for all of the amazing work that you are doing Lisa. It id do refreshing, if you’re not told that a million times already.
I agree that you demystify this horrible disease with your candor and observations. Thank you for sharing with us all.
Lisa,
Your ability to share your journey is educational for those living with cancer, those living with family members or friends who have cancer, and those who know of someone with terminal cancer. I always look forward to your posts, your eloquent way with words, your truth, your knowledge surrounding the journey with cancer. Keep writing, blogging, tweeting, sharing.
Lisa, as someone living with Stage IV MBC, I again learn how to explain to people why I will always be in treatment. I look very normal and most people think, I am done. I will never be “finished” with treatment until there are no more options. I am on Faslodex injections which have been working and next set of scans is May 6. Ovaries are being removed on April 22 as Estrodial number is too high. I can only have a hopeful attitude that I can continue on this treatment.
Thank you for your thoughtful way of explaining what is happening to you. Again you are my teacher and mentor with your poise, grace and amazing writing skills. I learn something from each and every one of your posts.
Be Well~~
I have been following your blog for some time but never with quite the same interest until my youngest daughter (29) was diagnosed with breast cancer just 4 weeks ago. Four weeks yet it seems a lifetime ago. Her hair is gone, her apartment is being sublet so that she can move back home for a period and eliminate some of her financial burden and I’ve got a new job of working with an oncology nutritionist to prepare her the healthiest foods possible. Diagnosed with Stage 2 breast cancer may seem no big deal to many but to me, her mom? It’s a damn big deal.
She is showing great courage; preferring to be an example of someone who is proactively fighting this monster and not willing to play a victim. Losing her gorgeous hair was hard but she’s hasn’t shied away from letting people see her baldness. In her words, ‘Why should I be embarrassed? I didn’t do anything wrong; I just have cancer.’ I know that in her determination to be strong, she sometimes cries alone and I’ve had to convince her that tears are not a sign of weakness at all; in fact having a good cry can be a big stress reliever. I dare say I know that for a fact!
She hopes to mentor others just starting this fight but I know she needs mentoring too. To that end I’ve sent her your website address; thank you for your honest and informative posts; I know they must be a blessing to many and I’m certain they will be for Lauren.
Thank you so much for clarifying for us. I honour your willingness to share your journey with all of us. I can’t imagine how tough this time has been for you. You’re an inspiration for me. Wishing you the very best through these next steps.
Kim
Lisa, You are an inspiration to me and so many others. I can’t say it any better than those who have commented above.
Thank you for your honesty.
You are in my thoughts and prayers as you fight this wretched disease.
Lisa, I am thinking about you and am hoping that the anti-estrogen agents will be the answer. All of us are sending you a great deal of support and concern.
You are starting a new plan. That is the important thing today. You are moving forward. This is good!!!!!
Lisa, from the bottom of my heart best of success with the new treatment – I hope it gives you a long stable time with minimum side effects!
And thanks so much for your blog – I’m 34 and also living with a non curable cancer – you speak my mind so often and in such a wonderful way! I had pretty much withdrawn from people because I couldn’t cope with the comments… You inspire to keep trying, to reach out and keep communicating! I often wonder how you find the energy and I wish we as your readers could give send you some in return!
Best wishes, Sophia
Although it’;s unfortunate that the xeloda stopped working, I think the side effects were also fairly strong for you. I hope the side effects of the afinitor and aromasin are less toxic although I know starving your body of any production of estrogen is no picnic. I hope theses medications help keep the tumor cells at bay for a very long time. XoXoXo – Susan
Hi! Believe it or not, mine were not considered severe. I was on the highest dose for six months which is very rare to tolerate at all. We can’t expect that any treatment that’s targeting metastatic breast cancer won’t have severe side effects… Look what we are asking it to do! I had trouble with an aromatase inhibitor a few years ago, we will see how I do now. No choice. Must figure out a way to deal with whatever comes my way. Thanks for writing!
This was the first entry that I stumbled upon when I started to search for cancer related blogs. My mother has stage IV lung cancer and has been “leapfrogging” over 10 different chemo treatments so far. Am so happy to have found this term for it is so hard to explain to family and friends that changing chemo is not the end, it is just the natural progression of living with cancer. We live in Indonesia, so this circle of family and friends can be VERY large. You are an inspiration, thank you…
lisa, i was diagnosed with stage iv breast cancer a couple weeks ago (originally diagnosed with stage iii at 25 in 2010), and your blog rings so true. thank you for being willing to share what i call the “seedy underside” of being in treatment for a terminal illness. it’s really awesome to know there are others out there who move through this illness each day in ways similar to me. your perspective and insights resonate so wonderfully with me and make it seem even a bit more bearable. good luck in your new treatment — i really hope it works for a long, long time.
I am so glad that there are other drugs you/we can take as stage IV patients. It’s encouraging to read your post and know that there is hope. I’m up for scans in a few short weeks and rather nervous about it. But that is natural, as you know. Best wishes, and my thoughts and prayers go out to you.
Life is a challenge and its upon us to overcome our challengers its when we wake up to another day. God bless you for sharing.