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! 

Every Journey Begins With The First Step

After hearing the news that the cancer was back, I had a good cry and then tried to listen to the "good" news Dr. Anderson was telling me. The take-away from his news was that I was about to embark on a new journey and it was my choice of paths to take.

The first path led to chemotherapy again. What little was coming through the screaming fit in my brain, was that it would do the job, but would most likely be a chemo maintenance program. This sounded more like looking over my shoulder for the rest of my life, not to mention being sick and bald again. A thorny path, indeed.

The second path was an anti-hormone drug. Not much of this information sank in, as it too, sounded more like a way for me to keep my eye on the rear view mirror than looking ahead to the future.

The third path was the clinical trial. Anderson talked about the Jimmy Carter drug, the advances in brain, lung and melanoma cancers, along with how I was the perfect candidate. But what resonated with me and finally broke the sound barrier in my brain, was the word immunotherapy. Finally, a drug that was saying it was there to HELP my body, not destroy it.

I was given a stack of paperwork to review and two weeks to read and sign. This always strikes me as odd, because if you read through what could happen while on this drug, why would you ever sign? Do you notice how fast they read through all the disclaimers on the TV ads for certain drugs? Again, why would I take this knowing all that could go wrong? Doesn't it seem more prudent to put them in a graph or something colorful that has the shimmery part be the good news? Oh well, that is another blog post.

Although I did my due diligence and read through the entire stack before signing my name, I told Dr Anderson, I was ready when he was to start the trial. It began with removing the obstacles from the path.

Obstacle #1 - Insurance. I had to switch companies from Medicaid to Trillium. This was not an FDA approved drug and therefore was not covered by a federal or state subsidized insurance. The paperwork was approved but Trillium didn't cover it either. We were at a standstill. The cost of the treatment was $20,000 a month.

Miracle #1 - Oregon just passed legislation that all insurance companies must cover the cost of clinical trials. The cost of the trial itself is covered by the study, but any resulting issues must be covered by your insurance. Remember that list of all that could go wrong?

Obstacle #2 - Tumor size. Mine are VERY small and attached to the pelvis wall. To qualify for the trial they had to be in a certain size range. Hard to qualify this as bad news, but it was an obstacle.

Miracle #2 - Combined the tumors met the criteria...just barely. I'm in!

My pack is filled with boredom busters, per the doc's orders. My biggest challenge now is to learn how to pronounce the name of the drug. A rose by any other name would smell just as sweet to me right now. I am on a new adventure. Taking the pills every 12 hours for the next two years, with regular screenings every Tuesday to begin and then every three weeks for the duration. I have my own room, a desk of sorts and a fabulous view from my Tuesday office window.

Taking that first step was a no brainer. Hoping the path, albeit uncharted, is passable. 

Feel free to leave questions or comments. We are on this road together.

GET BEHIND ME, CANCER

It is dawn in the Willamette Valley. I am packing my bag to begin a new journey. Last year I was at war with cancer. From surgery, through chemo and then recovery, I battled nine long months. Despite my best efforts to put the experience in my rear view mirror, cancer is not done with me yet.

Ovarian cancer is a stem cell cancer. Doctors know it will return. It is a matter of when and where. For me, it is two very small tumors on my pelvis. I am the lucky one. Most women experience reoccurence in three to six months. I made it to nine. To say I was disappointed, would be an understatement. To say I am afraid, would be a lie. Though I am still weary from the battle, here I am preparing to wield a new weapon, plotting a new strategy and once again emerge victorious. This time the outcome will be different.

As luck would have it, my Gynecological Oncologist, Dr. Charles Anderson, MD, is conducting a national study on the effects of a new immunotherapy drug, Acalabrutinib, on recurrent ovarian cancer. This clinical trial is a Phase 2 proof-of-concept Study of ACP-196 and in combination with Pembrolizumab (also known as Keytruda, popularized by the name Jimmy Carter Drug). The study has been done on aggressive cancers, such as brain, lung and melanoma, hence the name Jimmy Carter Drug, as his success story was one of the first to be part of the study.

A computer flip of the coin, placed me in the group study with the single drug, Acalabrutnib. The drug is in capsule form and I take one every 12 hours. A daily diary charts the drug, the time and effects. The study is for two years and my cancer is monitored through weekly blood tests, along with scheduled screenings. If the single drug does not produce the intended results, the second drug, Keytruda, will be introduced in combination with the Acalabrutnib, as an infusion every three weeks.

I pack confidently for the journey, ready to blaze a new trail. I invite you to follow me as I post weekly on the new dawn of this cancer battle and what this immunotherapy will reveal for future cancer treatment. Feel free to ask questions, leave comments, laugh, cry and share this experience that may prove to be the answer for so many women following behind me, waiting and hoping that the path for their recovery will be cleared.