I've been dragging my heels writing an update. I think that is because there is just so much I could say....the research studies I read outlining the "progression free survival times" of each of the options on the table, the details I learned about each of these drugs and their various side effects, the opinions my oncologist shared about not only these treatments but the state of my disease overall, and the various emotions that have bubbled up at different times over the last week or so. I have had a little "paralysis by analysis" about what to share, mixed in with a bit of fatigue now that I have returned to work, and topped off with the simple fact that I have thoroughly enjoyed all of my remaining free time without worrying about this disease or wanting to blog about it. But, with that said, I am so very grateful for all of the love and support so I did want to take the time to share the latest update regarding my treatment plan. Mike and I had a 45 minute telehealth appointment with Dr. F last Tuesday. We went through all of my options and discussed the pros and cons of each. We asked questions, shared our thoughts and opinions, asked Dr. F for his and ultimately decided on the next course of action.
I will be switching treatments to another combination of endocrine (hormonal) therapy and what's called, "targeted" therapy. The last treatment I was on was also a combination of these types of drugs. I have been on some form of endocrine therapy these last nine years, due to the estrogen receptor status of my particular form of breast cancer. This is my last option of endocrine therapy before moving on to stronger chemotherapies, so it was worth it for me to give it a go. It appears that my disease is becoming somewhat resistant to endocrine therapy but we are going to move forward and pray that it works for a very long time. The endocrine therapy I will be switching to is called Exemestane and the side effects will likely continue to be menopausal in nature, which is something I have continued to deal with for the last 9 years anyways, so no biggie! The side effects may include: hot flashes, headaches, fatigue, joint pain, nausea, increased appetite, insomnia or increased sweating. The targeted medication is called Afinitor. Research has found that it has promising effects when used in combination with Exemestane. Both of these medications are oral pills that I will take every day. The main side effect of Afinitor is mouth sores. They do not sound very fun to deal with-especially considering how much I love to eat! So in conjunction with the daily medication, I have to use a steroid mouth wash 4 times each day. Additional side effects may include: infections, diarrhea, swelling of arms/legs/ankles/face, feeling weak or tired, rashes, cough, nausea, fever, decreased appetite, abdominal pain and headaches. I have never been one to worry too much in advance about these side effects so we will just take it one day at a time and hope that most of these never arise. The medications arrived from the speciality pharmacy on Tuesday and I started them immediately. I have scans again this upcoming Monday to get a baseline as we change treatments. I will meet with Dr. F on June 11th to find out how my scans looked and to discuss how I am feeling on the new treatment. After 3 1/2 years of the same treatment and knowing what to expect, I would be lying if I said I wasn't nervous to start these new medications. I am also nervous that there is a chance they won't work and my disease will progress. That is a terrifying thought, as the number of treatment options ahead of me decrease. But I will continue to stay positive and have faith that this will work, and work for a very long time! Thank you for your continued love, support, friendship and prayers! xo, Meghan
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Friday afternoon my phone vibrated. I looked down at the number and took a deep breath. I immediately recognized it as a call from Karmanos Cancer Institute, and sure enough it was Dr. F, my oncologist. He informed me that there was just enough tumor sample in my ovaries to allow the lab to complete the testing for the genetic mutation. As he talked for a couple minutes, my mind started to swirl and I knew it wasn't the news I wanted. This was taking too long...he was dragging this out...he kept talking...he would have told me by now if it was good news...I know him well enough to sense these things. The biopsy was negative. Damn it. What comes along with this news is the fact that I do not qualify for the treatment we were hoping to try next, called Piqray. It acts upon a mutation in the tumor called PIK3CA. Approximately 40% of women and men with my type of breast cancer (ER+, HER 2-) have this genetic mutation and Piqray works to inhibit this pathway. It has shown to be a very promising treatment, with minimal side effects, which is why we were really hopeful this would be our next move. So, it's time to pivot. What do we try next? How many options are there? What does the research say? What are the side effects? Nausea? Neuropathy? Fatigue? Which are infusions that I have to go into the clinic for? Which are shots? Which are pills? What about clinical trials? What will allow me to have the greatest quality of life? Mike and I will have a telehealth appointment with my oncologist on Tuesday afternoon to discuss all of this and hopefully formulate a plan we feel comfortable with. The extremely difficult part in all of this is that no one has any definitive answers to these questions. Nothing is black and white. None of this is that simple. There are averages, probabilities, statistics. We don't know what will work next. It feels like a crapshoot, and that is tough to digest. Not even 40 minutes later, my phone vibrated again. My boss called and notified me that I was being called back to work, starting Monday. I am grateful to have my job back, but I couldn't help but shake my head at the irony of all of this. After 8 1/2 weeks of being laid off and also waiting on the next treatment decision, all of this is happening at the exact same time. I was hoping to be able to use this down time to adjust to a new treatment regimen, but that's not the way it has worked out. Once again, it's time to pivot. Luckily, I am able to take over our telehealth patients which will allow me to work from home for a bit, until I am needed in the clinic. Of course there will be a learning curve while figuring out how to treat my patients remotely, but I'm fortunate to have the opportunity to ease back into work in this way....and to minimize my risk of exposure to illness by being in the clinic. A lot of news to digest in less than one hour. I felt a wave of emotions on Friday night...nervous, anxious, disappointment, relief, fear, worry, gratitude. I have been in a safe, lovely little bubble with Mike and the pups for the last 8 1/2 weeks...and I'm not ready for that to end. I don't want to be anxious about my health or feel stressed over work. I woke up Saturday morning and made the conscious decision to choose positivity and to focus on gratitude. That has always been my compass which will steer me back to living life to the fullest, no matter what circumstances swirl around me. Today I choose to be grateful that I even have treatment options. I choose to be grateful that I have an oncologist whom I trust. I choose to be grateful that I have a husband who will support any treatment decision I make. I choose to be grateful that I will trust my gut, advocate for myself and ultimately be the captain of this ship - always. I choose to be grateful that I haven't had much pain over the last couple of weeks. I choose to be grateful that I have a job; one that makes a difference in peoples lives. I choose to be grateful that I will have a paycheck; that I can work from home, and that one day I will be back in the clinic with my co-workers who are dear friends. I choose to be grateful that we have had such a wonderful weekend and that it reminds me that the sun always rises, the world keeps on turning, and that life goes on. We will continue to ride this wave. We will continue to be resilient enough to handle what comes next. Time to pivot. xoxo, Meg We have continued to make the absolute most of this slower pace of life and extra time together. Hiking, biking, gardening, kayaking, relaxing...it's been such a blessing amidst all the chaos in the world right now.
The waiting game....It's never fun, but in the midst of a global pandemic, it has been taken up a notch. It has been longer than expected since I have shared an update and that is due to the fact that I was waiting for more information to actually update you on. Last week marked 6 weeks since I had been off treatment and over 5 weeks since the biopsy of my sacrum. Just as a little recap, that biopsy was completed in order to test whether my cancer has a particular mutation that would qualify me for a new promising drug, since we have come to another fork in the road regarding my treatment plan. I was told the biopsy results would take two weeks for the independent lab to complete, but I didn't hold my breath knowing full well that everything is delayed these days in the midst of COVID-19. While I awaited those results, I completed 10 radiation treatments, started to have pain relief, got off the meds that made me feel lousy, felt super grateful and relieved...and then the pain returned. It's been a bit of a rollercoaster, which seems to be par for the course when I'm in the midst of a recurrence. The good news is that after re-introducing the nerve pain medication, I am feeling better with minimal side effects...bonus! In all honesty, I have actually been surprised at how patient I have been while waiting for these results. (Patience is definitely not one of my virtues!) I have been able to let go of any stress or anxiety about it, knowing full well that it was entirely out of my control. But, come Week #4, I was hoping for some type of update. I called my nurse and was told that the lab had completed 3/5th's of the testing. Fast forward to Week #6, and I was starting to get a little antsy. I checked in once again to see if there were any updates, and that's when the rollercoaster ride continued. The first thing my nurse said was, "the biopsy is positive"...and I literally said, "yes!" out loud. However, my excitement and relief were quickly dampened when she said the lab did not have enough tissue to complete the testing. The "positive" aspect she was referring to was that the pathologist reported that indeed this tumor is metastatic breast cancer that has spread to my sacrum - which is what we already assumed. The fact that there wasn't enough tissue to complete the testing for the mutation was devastating. It has been very unsettling to be off treatment for 6 weeks; the longest I have ever gone in 9 years living with MBC. And now to top that off with feeling like that biopsy of my bone (which was not fun), and the subsequent 6 weeks of waiting...has all been a total waste. The plan now is as follows:
There are a few other important considerations that further complicate things. The one that weighs heavily on my mind is that no one knows if this tumor mutation survives in tissue that has been preserved for many years. There is a great chance that even if I have a positive mutation, the test will be negative because the tissue they are testing is 3 years old. On top of that, what if there still isn't enough tissue there to test? Do we have to wait until my tumors grow large enough to have a painful biopsy yet again in order to have a complete test? All of this scares me. To top it all off, communication with my treatment team has been poor and for the first time in 9 years, I have felt very in the dark and have been left with a lot of unanswered questions. For now, I am focusing on the hope that being back on some type of treatment contains my disease and hoping/wishing/praying/pleading that there is enough tissue in my ovaries to complete the testing and that the result is positive. I continue to practice letting go of what I cannot control and will continue to live, love, laugh and soak up every moment I can....despite remaining on this rollercoaster. xoxo, Meg Mike and I enjoyed a hike last weekend and coming upon this tree felt so poetic to me. Sometimes we are forced to bend so much that we think we might break. It's amazing what all living things can endure.
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