Hi all,
I may not be posting much this month. Now that all three of our children are home from camp the house is busy and we are readying for school. Public school here starts the last week of August so we have less than three weeks remaining of lazy summer days. I will make sure to post anything important news-wise.
My tumor markers have not climbed any higher in the last two weeks though they still remain slightly elevated from levels a few months ago. Both of my oncologists feel my current chemo regimen of Aromasin + Afinitor is still working.1 Nonetheless, we would like to see if we can drive the number down further and erase that gain. We are still getting a sense of how much variation is normal with this imprecise test.
Side effects on this Aromasin/Afinitor combo are cumulative in severity, so the longer I am on it, the worse they will become. Currently my major issues are fatigue, immunosuppression (making travel and being in public places risky), mouth and tongue sores, joint pain, muscle aches, skin breakdown, itchy scalp, sun sensitivity, high cholesterol, high triglycerides, increased blood pressure and rapid heart rate. Loss of appetite and associated weight loss are also factors. Yes, I know: to look at me you’d never know all of these plague me. I try not to talk about them too much but they are there.
Because I know many readers will be interested in potential remedies for some of these problems, I should say that I do have all of the treatments I need to deal with these side effects. Some of them are just the way it is, and you have to just adjust if possible. Others like mouth sores and skin/scalp issues can be very successfully treated with topical steroid ointments and liquids (some believe coating the Afinitor pills with food prevents mouth sores but this is actually just a coincidence. It’s not the contact with the mouth that causes the sores, it’s the mechanism of action that does. Blocking the mTOR pathway causes oral mucositis and stomatitis. Starting initially on a smaller dose and working up to the final one does seem to help with the initial outbreak of sores though). Walking helps both the joint pain (despite initial pain) and fatigue, while occasional Ativan helps the blood pressure, heart rate, loss of appetite, and some muscle issues. These are some of a few of the things that my oncologists and I have found to help.
One of my oncologists told me I was “at the precipice” with my side effects; my body could not tolerate a higher dose (currently I take 25 mg of Aromasin and I alternate 5 and 10 mg doses of Afinitor to average 7.5 mg/day). A meeting with my other oncologist today yielded a decision between that I would increase my chemo dose ever-so-slightly to see if I can tolerate it while hopefully get a response.
This type of situation is where the art of oncology comes in. I give a liberal interpretation to the term “art.” I think it’s educated guesswork, creative thinking. The science is the foundation but the application and choices are sometimes educated guesses.
We don’t know if a small increase will affect the tumor markers. It might. It might not. Can my body handle more? That’s an unknown too.
I think of it like the old fashioned scale in the doctor’s office– the one with the weighted bars that you slide left and right until they balance. The nurse gets close to the target, then nudges the bar bit by tiny bit until just the right balance is achieved. This is what we are trying to do: balance quality of life (side effects) with maximum efficacy. Where that line is, we do not know. It varies for each person.
We’ll test again in another week (two weeks since my last one), but it’s unlikely we would see any result that quickly. At least we will see if the markers are continuing to hold steady.
As far as this website, I have many ideas brewing for blogposts soon. Readers have also contributed some great ideas and asked questions that I will do my best to answer.
As always, thank you for the continued support.
- these are two pills I take daily. I also continue to receive a monthly injection of Xgeva to strengthen my bones [↩]
Link to Twitter
Lisa, you inspire me with your strength. That’s all.
*mwah*
Hoping the right balance is very close at hand & you can stay with this treatment for a good while.
I love you, I admire you, I respect you, I look up to you. And I’m always glad to get an update, because I learn so much from them.
Thank you for the update and hugs from CO.
Sending good thoughts that this will be the right and sustainable balance.
Your strength continues to inspire me as well, Lisa. I hope this chemo combo is the right one for you.
You must be happy to have your children back home!
Thank you for the update. The amount of side effects you are having to deal with are much more than I realized. Please know that your updates are important to me. I am hoping the increased dosage has an impact on the tumor markers, with no increase the severity of your side effects. I was surprised to read that the side effect get more severe as time goes by, I would have thought the opposite. Thank you for clarifying that.
As always, you’re in my heart.
I so appreciate and honor your reports to us be they good, bad or indifferent.
I so honor your reports to us be they good, bad or indifferent….the strength , courage and feelings that it must take to send out the real message of cancer survival are enormous. Lisa, most of us live without really living…you are telling us what it is like to really live….each day….a treasure….each moment…special…I know you will continue to do so and I thank you .
Lisa, you continue to amaze & inspire me. What a lesson you teach in how to live! I hope the benefits of treatment increase the side effects decrease. I don’t always comment but I read every blog & think of you often.
Thanks for the update. It is good to read your experience with Afinitor and Aromasin. I am on the same combination. I also have an itchy scalp, but had not realised it was a side effect. I thought it was because of my new shampoo!
Enjoy the coming weeks with all your children at home. Such a long summer vacation in the States, it’s only six weeks here in the Netherlands!
Diana, yes! I developed it about 4-6 weeks after starting. My dermatologist prescribed a liquid steroid that you just dab on the itchy spots as needed. It really helps a lot. If you need more info on the specific name of it just let me know if you think they will help you get it. I don’t need it too often once I broke the cycle but it really works.
Yes, usually vacation is about 10 weeks here but with all of the days we needed to make up because of missed school this year (especially Hurricane Sandy) it really was more like 8.5 weeks I think. Our school starts early… most not until after Labor Day!
Thanks for reading…
My daughter doesn’t finish camp until the 16th. She goes back August 28th (half-day Wednesdays) so I will take my vacation then. I am glad you will have these days of summer with your children. I hope your husband can take some time off too so you can have some family time, and so you aren’t completely exhausted every day.
Like everyone else, I hope the increase in meds does not increase your side effects. You are coping with quite a bit right now as it is. I do worry when I don’t see a blog update. I am always grateful when you have the strength to write one.
Holding you in my thoughts.
Yes, oncology is an art and science, isn’t it? I think of you often and know that we in the online community care so very much about you.
Your words, demeanor and attitude inspire me and give me strength.
So glad you are talking about your side effects. I have most of the same ones. I find no one wants to hear about them. What especially dumbfounds me is when healthy people say in response that oh I have that too. Strange. So i usually don’t mention them. But sometimes I need to and I share every one..
I love your expression “art of oncology.” It certainly is an art. I’m not on the drugs you are on because my metastasized tumors biopsied differently, but I completely “get” what you are saying. I, too, experience side effects that are cumulative. To look at a lot of us, people would not know we are facing all these challenges, but we are. It’s part of the mystery, the conundrum. Keep on keeping on. Many hugs, Jan
hi, Lisa. We’ve never met. I’m also a mother of three with stage IV cancer (living up in Western Canada), and your blog has been a gift to me. This can be such a lonely road, and it’s surreal and moving for me to hear another mom’s voice.
Back-to-school time for us soon here, too. New indoor sneakers are the errand of the day. Those little pleasures have an extra sweet, weird poignancy, don’t they? best, Ursula (ursulasmelanomablog.wordpress.com)
Lisa,
Your blogs are so meaningful. Thank you for sharing yourself and your family with us–particularly at this time when it must be tempting to shut the outside world out. You are inspiring. Lisa Lurie
Hi
I am South Africa and my mum diagnosed with same cancer also on same medication now for a month however her markers have increased by 10 and she experience bitter taste continuously and cannot enjoy her meals.