Cancer Wins Round One

Despite a challenging week of news that not only have the original two tumors grown, but three more have appeared, I find myself at the crossroads of chemo vs clinical trial once again. Cancer may have won round one, but I am not down and out just yet.

The next squirmish begins on June 21st with the addition of the drug Pembrolizumab or for us non-medical geeks, Keytruda. The drug is dispensed through infusion, similar to chemo. It is a monoclonal antibody and used in conjunction with my current medication of Acalabrutinib, its function is to stop or slow down the progression of the cancer. 

Dr Anderson reassured me that I have not lost ground, but it does feel that way. I was not surprised by having to switch to the study on both drugs, but was discouraged at the news of more tumors. They are extremely small but nonetheless they are there. His words were that without the drug, this would be a crisis and the tumors would have grown exponentially. The fact that the drug was able to keep us at the slower pace of growth is good news, but not enough to bring out the band. 

Still, it was discouraging to me and to my family that the past three months have only made small steps forward and what seemingly feels like a few steps back. I can at anytime choose to take chemotherapy. Dr Anderson readily admitted that the tumors are so small that chemo would knock them out quickly. The immunotherapy drugs are slow acting, hence the new growths. It takes the Acalabrutinib three months to show results. But not one to back down from a good fight, I have opted to add the Keytruda and see this to the hopefully meaningful results we need. 

Other new horizons in cancer therapies are DNA repair inhibitors, that help chemo's effectiveness by working on the DNA's ability to repair itself. The Nobel Prize was awarded to Paul Modrich, Tomas Lindahl and Aziz Sanca for the mechanistic studies of DNA repair. Which is alot of jargon to say, if we can use immunotherapies to keep the DNA from repairing itself, cancer could be stopped in its tracks. Effective in colon cancer and lung cancer, we are now seeing studies to find applicable patients who have similar DNA repair defects. 

All this encourages me to continue the fight and to see what changes are rapidly being made to give cancer the knock out punch, or to at least change the face of the disease from terminal to chronic and keep cancer down for the count. 

Feeling a little like Muhammed Ali...float like a butterfly, sting like bee. Cancer, you have not seen the last of me!

Just Keep Swimming

If there is one game where all cancer survivors know the rules, it is the Waiting Game. There is never an instant answer. It is never a yes or a no. It has more shades of grey than EL James book and the best you can do is remind yourself that you are not in control of the outcome.

This may seem harsh, but it is true. You walk in the doctor's office not feeling well, or maybe feeling fine but your body and patience are tested as you wait for results that will ultimately change your life forever. 

That is where I am this week. I have been in the clinical trial for 10 weeks. All in all, it has been a walk in the park compared to a year ago with surgery and chemo. There are thin lines between the drug, age, cancer and everyday stress. I am beginning to know the difference and adjust the sails accordingly. Next week, is the cat scan that will determine the course of action for the months to follow. 

The regular cat scan schedule marks the growth of the two tumors on my pelvis. The current drug (Acalabrutinib) is working to keep the growth at bay. Its initial reaction is to cause inflammation as my immune system engages the cancer in a squirmish. The full effect of the drug takes three months. Much slower than chemo, Acalabrutinib, takes time and is the reason it is not used on advanced cancers at this trial stage as mine was a year ago. The study after 10 weeks is now closed, so I count myself fortunate to be among the few who were selected.

This next scan will mark the growth again. Dr. Anderson will assess if there is enough stability to continue the one drug or if we need to add Keytruda, an infusion drug, to help stimulate the immune system further. I am not sure what to wish for, since the addition of the Keytruda means we reset the clock and start the treatment protocol as of day one on June 14. The last three months are wiped off the record and we go again with the weekly testing and blood draws. On the other hand, it means we are pulling out all the stops and wage full out war.

Meanwhile, we wait. Wait to plan for the summer. Wait to plan for seeing a Giants game in August and a Mariners game in September. Wait to plan for a Mavericks concert in Portland. Wait to plan for work. Wait. How will I feel if I am on the new drug? What will the new protocol calendar look like? Wait. Wait. Wait.

Yesterday was the first day I have felt anxious about this process. I can't explain why, except to blame human nature for being impatient with all the waiting. My daughter was disappointed this was not going to be a cure but a maintenance of the cancer. It struck me that I may feel "fine" for the rest of my life. That the measure for how I feel on a given day may be a game of inches. Again, it comes to that thin line between aging gracefully and immunotherapy. But the reality is, once you have cancer, you are forever waiting. Waiting for the other shoe to drop. Waiting for the monthly, quarterly and yearly check-ups to give you peace of mind or toss you in the tornado of medical practice.

We learn to wait with hope and faith. In the infamous words of Dory in Finding Nemo, "when life gets you down, you know what you got to do? Just keep swimming, just keep swimming."  

Hurdles

This is week seven of the trial study. For the first four weeks, I was expected to keep one day a week free to wait for repeated blood tests and other screenings. The process is about six hours long and although most of the time you are indeed, sitting and waiting in the doctor's office, it is taxing on the psyche. 

You arrive and the phlebotimist, aka blood sucker, draw several vials of blood for testing. You are asked not to take your morning dose of the drug until this is done and the doctor has had a chance to review the results. You wait. The nurse calls you in and you are weighed, vitals are taken and the doctor comes in and asks a series of questions. For the most part, it is "how are you feeling" but there are a few pointed questions, like is this or that the same or different from when you started treatment. He reviews the test results with you and then you are taken to a treatment room where you take your morning dose of Acalabrutinib. Over the next 90 minutes, blood is drawn every 30 minutes. Then you progress to an hour, and then two hours. You have an EKG and your day is done. In the two hour window you may leave and return, but other than that you sit and wait.

If you have ever had multiple blood draws (total of six over the six hours) and you are a chemo survivor, you know eventually your veins cry uncle. It becomes painful and you look like a bruised pin cushion by the time they find enough places to draw from a vein. They do not do it in the same vein each time, so both arms are assaulted and your neck has a kink in it from looking the other way. Although I am not technically doing anything, I am exhausted by the end of the experience and ready to go home. 

After four weeks of this, you graduate to a three week routine. Throw a CT scan in there for good measure and you have my past seven weeks. The CT scan was not good but it was expected. This first scan shows that there is inflammation in the pelvis. This means the immune system is fighting bravely and although the hope is that it will be the victor, at this stage, the cancer is most likely overwhelming it. It takes about three months for the drug to be at its peak performance. This first CT scan is therefore an indicator that there is still a long way to go. 

The next hurdle is a second scan scheduled in four weeks. This is a more accurate depiction of where we stand. If there is 20% growth in the tumor, then I will be added to the second study and given Keytruda in addition to the Acalabrutinib (I warned you the difficulty here would be in the pronunciation). The Keytruda will be administered as an infusion, similar to chemo. We then hit the reset button and the study begins again as if the past three months never happened.

For the next three weeks, I am on my own, although the doctor keeps a close eye on symptoms I may experience in the meantime. I feel like my body has finally adopted this new way of life. The symptoms, mostly gut related, have leveled off and feel predicatable and manageable. There are no highs and lows like chemo. I am still losing weight and my appetite is not what it was, but I feel good and am slowly getting back to my exercise routine. I am grateful for small blessings. The next hurdle lies ahead and will hopefully show my body is whipping cancer into submission.

For all of you survivors, caregivers, friends and family of loved ones going through cancer treatment, be positive, be brave, be optimistic. The hurdles may seem insurmountable, but for every one we jump, we are that much closer to the victory lap! 

When Fine is Good Enough

The other day a friend came up and asked how I was doing. Before I could answer, she smiled and said she wondered how many times a day I heard that question and that I was probably sick of answering it. One of the hardest things about cancer is putting on that brave face every morning as if it were part of your make-up routine. You develop a pat answer to dodge the question but more to make the person feel good when they walk away. My stock answer is "still standing" or "everyday out of bed, is a good day."

It is incredibly hard for people to walk the delicate line between, I want to know how you are feeling but I am afraid to know how you are feeling. Even as a cancer survivor, I still question every little ache or pain and if I am in pain, I don't want it to affect those around me, so why would I tell someone how I feel. My friend, Heidi, called me stoic. It sounded cold and isolated. But I understand that as hard as it is to ask how someone feels, it is just as hard to answer that question, ergo the stock answer, rather than admit our vulnerability. 

The clinical trial is going well, from my perspective. There are definite changes to my body but since I haven't felt on top of my game for over a year, it is a bit of a process of elimination to know what is from the trial drug, the cancer, stress from work and caregiving aka LIFE! It is important to Dr Anderson that I peel away the layers of life and focus on any changes that are directly related to the drug. My gut literally tells me, the changes are real, hopefully temporary and although a daily distraction, not nearly as devastating as the chemo.

I have found wearing loose clothing helps. Dr Anderson believes that some of the gut pain issues are related to the original surgery healing process and not related to the cancer or the drug. It was the same after my mastectomy 25 years ago. Anything pressing or touching against the surgical area is either painful or very uncomfortable. Short of being naked, which believe me would not be an attractive look on me, I am trying to find clothing that eases me through the work day, until I get into the comfort of a pair of sweats.

My appetite is down and a general sense of fatigue, but not to the level of slowing me down. I am more aware of it and try to eat sensibly and more often, and come home for an hour or so for lunch to rest. For cancer survivors, the word "fine" is a good definition for the coping skills we have learned to acquire. We are fine. So please, don't be shy about asking us how we feel. There is no such thing as denial for someone going through cancer. It is a daily preoccupation and you - friends, family, co-workers are all welcome and loving distractions. Sometimes fine is good enough for now.

It is okay to be vulnerable. If you have questions or know someone who is struggling, feel free to leave a comment. We are in this together.