clinical trial – Page 3 – polepole ~ breathe

Privileged

Privilege, privileged – the word has come to my mind a lot lately as I think about my treatment and healthcare compared to others’. The “others” I speak of in this case all have access to healthcare, so I guess they too are ”privileged“: a special benefit that is available only to a particular person or group. (macmillandictionary.com) Many people in our world do not belong to the Access to Healthcare Club at all.

My mind begins to confuse the definitions and ways the word privilege is used as I consider my lung cancer treatment. The definition above doesn’t tell anything about the person or group, but in this case privilege feels good and not so good.

I definitely feel it is a privilege (something nice that you feel lucky to have) to have qualified for a clinical trial at Dana-Farber Cancer Institute. It feels really nice and lucky to be there. We work(ed) hard to get there (years of employment earning health insurance, paying fully for that health insurance now that I can no longer work, driving to Dana-Farber (250 miles one way), and on and on… But it is a privilege that even someone WITH health insurance living in some regions of THIS country cannot access. Clinical trials for my targeted therapy drug Lorlatinib are only available in a few places in the country. This drug targets only two very specific gene mutations/drivers(more on how cancer cell mutations happen), ALK(in 3-7% of NonSmall Cell Lung cancer) and ROS1(1-2%). We are lucky drugs are being developed for such a small number.

Today Lorlatinib may be available for Compassionate Use (Expanded Access), but it was very difficult to acquire in this manner until recently (now that it is near FDA approval.) I know this because not long ago one of the “others” with ROS1 developed resistance to crizotinib, the only FDA approved targeted therapy drug for ROS1. (Have I ever said that because of this mutation, standard treatments don’t work?) So, after crizotinib stops working, a ROS1 lung cancer patient has little hope unless she can get into a clinical trial. This patient lives in a region where there was not access to a trial. Drive to one, fly to one you say! Not if the person is not well enough to do so or hasn’t the financial resources to do so. Maybe she doesn’t quite meet the criteria. How about compassionate use you ask? Not available in this case. What?!!? Time’s running out. In this instance, the last I knew lung cancer patient advocates began reaching out to the drug company and the ROS1 experts in an effort to acquire treatment for this patient. I was not able to learn if help came in time.

Privilege: a special benefit that is available only to a particular person or group

I belong to a FaceBook group for ROS1 patients from all over the world. Nearly all are lung cancer patients. We are able to share information and learn from one another. I’ve found it immensely helpful in my search for understanding of this disease. This group is available only to ROS1+patients and their caregivers. A privilege that is available to anyone who would need/want it, if they have internet access, and can read and understand the information.

Even those with the education, reasonable financial resources, and health care access cannot assume the privilege of receiving my level of treatment. Lorlatinib isn’t available in all parts of the world. And, the newest of these drugs ( Tyrosine kinase inhibitors)that treat ROS1, entrecinib, isn’t available even through clinical trial right next door in Canada, according to an “other”. (That will still make only 3 drugs, 1FDA approved, to treat ROS1, and those pesky cancer cells really know how to build resistance to the drugs.)

I know what it was like before my first targeted therapy drug. I was dying. I did not build resistance to it (but had brain progression). I am privileged to be treated in a facility where I have scans regularly, where I know when I have a symptom (such as with the brain progression) it will be looked into quickly, where treatments are known and available, where a plan is ready if cancer overpowers the drug. I know of an “other” , living in another country, who died while waiting for treatment to arrive. I am so sorry this happened.

Without the many privileges I enjoy I wouldn’t be here, drinking tea by the Christmas tree, wood fire warming the room, still trying to sort the good and bad of the definitions of a word as it applies to my experience with healthcare. I know the circumstances of my life (from childhood and education to the love and support of Dan and our family) have equipped me to access the best level of treatment. But does that mean I should be privileged, should belong to the club when “others” with the same needs are allowed to die because they can’t access the correct treatment? A treatment that IS available, but not accessible for that person. I can’t change the world, but gosh, at least in our country, it seems like access to known lifesaving healthcare should not be a privilege.

And, by the way, have you heard me say lately that LUNG cancer research is way underfunded? It is the deadliest (433 Americans per day) and least funded when compared to the other common cancers. I’m making my voice heard to my representatives, and urge others to do the same. Oh yes, and radon is the second leading cause of lung cancer – just thought I’d get that in there.

I’m privileged to be able to serve on the Family and Patient Advisory Council of the Maine Lung Cancer Coalition MLCC. More on this work later.

Finding joy in the everyday im my cozy home, making memories, and loving life with Dan, family, 3 little dachshunds, and 2 Nigerian dwarf goats – that’s me, living a life of …

Lucky to be me!

Try to imagine that you’re hiking along life’s trail, happy go lucky as can be and then you find yourself slowing to a walk and then a crawl. That’s kind of what happened to me in the fall of 2015. Despite the house fire recovery, things were good, and then they weren’t.

I’m lucky! For lots of reasons. I’m really grateful to the FNP or PA who saw me on that Sunday at the walk-in clinic. She did the x-ray that led to the discovery of my lung cancer tumor. If not for her, I’m not sure help would have come soon enough, I was crawling that slowly. But I am so fortunate that she knew to do that x-ray that day.

And then There I was at Dana-Farber Cancer Institute barely crawling (Dan thought it was time for a wheelchair) to my radiation sessions (that were for palliative care while they were developing my treatment plan) when I found out just how lucky I really am. I am LUCKY! My cancer, at that time already spread to my liver and pelvis, was treatable with a targeted therapy drug. Yes, that’s right. TREATABLE! Not sure about others, but Dan and I knew that I wasn’t going to be crawling much longer if something didn’t change, so hearing that word treatable made us feel blessed indeed.

Great Educational Reading on lung cancer, genetic mutations, target therapy treatment, and more!

Back to lucky me!! Thanks to the testing done by Dana-Farber and Brighams it was discovered as quickly as could be that the lung cancer in my body is driven by a cell mutation called ROS1. While ROS1 is what caused the rapid spread, it is one of a few mutations that can be battled with a targeted therapy drug that truly targets those ROS1 cancer cells and not all cells like chemotherapy does. It was available at that time for expanded access, not quite FDA approved. And, it is a pill that you take. I am lucky. I was dying and in just a few days the crizotinib began to work. I started the drug on March 2 ,2016 and check out how different my lung looked by May. (Feb.,even after radiation on right, May on left)

IMG_2968 (1)

Told you I’m lucky! I’ve had two years since cancer crept into my body and ROS1 slammed me. Great years filled with blessings beyond thinking. If not hiking, definitely walking at a good pace and feeling pretty darn good.

Still lucky! After 16 months on crizotinib, the cancer progressed to my brain meninges. Crizotinib does not protect the brain, so when one of those little cells sneak by… Researchers had developed a newer drug that battles ROS1 that does fight in the brain, and I was eligible for a Phase II clinical trial at Dana-Farber. Lucky!!! This drug too will soon be FDA approved. It is a pill taken once per day. Since July Lorlatinib has kept everything from the neck down looking the same in scans, and it has reduced the cancer in the meninges by 75%. Lucky, blessed, fortunate – give me a thesaurus – I’m that.

Research doctors are working on the next line of treatment to work against ROS1 when it figures out the code for this treatment and builds resistance. I, and so many others with acquired cell mutations such as ROS1, are SO grateful.

Saying I’m lucky implies that it’s all by chance. I know that’s not so. Something more than chance is at work here. I’m grateful every moment of every day.

Update, November 16, 2017

Now that I can no longer post to carepages, I will do my updates here. We’ll miss carepages, first introduced to us when our grandson was born at Brighams and whisked (with mom) away to Children’s where he had his first of a few heart surgeries. He’s a very healthy, athletic eleven year old! But then, and now, we needed a way to update and communicate easily with friends and family. So, thanks carepage!

GREAT NEWS! Lorlatinib is working for me. 75% reduction of the cancer in my meninges! I am having no symptoms from the cancer in my brain. I am having some minimal side effects from the lorlatinib doing its job in my brain. Lorlatinib is also controlling the cancer in other places of my body as well as my hero Xalkori Crizotinib did. High cholesterol is a side effect of the drug, so my Crestor has once again been increased, but I’ve been assured that this can be managed and wouldn’t be a reason to stop the lorlatinib. Whew! So, at the lower dose from when I began, it is still effective for me!

Dan and I drove to Boston Wednesday for the Thursday appointment. Our first test was at 6:30 AM. We were finished for the day at 2:45 PM and then Dan had to drive home in the pouring rain. Traffic was heavy heading out of the city, and then visibility was terrible on the highway. It got dark while still on the interstate. We stopped for a quick dinner and break in S. Portland, Between Augusta and Belfast it was mixed precipitation. But finally at 9:20 PM we pulled into the driveway, safe and sound. Dan’s my hero, always. The greeting by the three little dachshunds was as wonderful and crazy as always.

We are ever so grateful to/for everyone at Dana-Farber, everyone in lung cancer research, and our family for jumping in so we can travel.

Symptoms, side effects, or just part of living?

Sorting out what is caused by what, and when to be concerned or not, is tougher than you might think. For example, everyone has headaches, but headaches caused by cancer progression to the brain, at least in my case, feel different and aren’t helped by ibuprofen , Tylenol , migraine med, or acupuncture. I knew they weren’t migraines because I used to be tormented by migraines. That was before acupuncture! Luckily for me, the cancer headaches weren’t bad, just chronic and different – a symptom of cancer, and as the new drug attacks the cancer, they’ve resolved.

Recently I’ve been plagued by serious hand neuropathy . Now, that could be a symptom as it is caused by the Central Nervous System , and the meninges where my cancer progressed to is part of the CNS. But, it’s not. It’s a side effect of my clinical trial targeted therapy drug Lorlatinib. And, to make sure of this, I was off the drug for a week. Yup, relief came at day two. So now I go back on at a reduced dosage.

Other examples include my new high cholesterol (side effect of Lorlatinb), and the body aches which I think are a side effect of the statin that I’m taking for the high cholesterol ! Or, perhaps it’s just regular sore muscles from aging or going back to the Y to work out. Not sure, but not really much of a bother.

But it is really important to pay attention to the body and the subtle differences as they provide clues as to whether something is a symptom, side effect, or “normal”. Here’s another example – When I was on crizotinib I could count on bouts of diarrhea every four or five days. Solution? Imodium. With Lorlatinib I had no digestive issues, and then a few weeks into the trial I began to have bowel incontinence. Not diarrhea. No explanation. Scary. Because it could mean that the cancer was in my spine and messing with nerves to bowels. Luckily for me, the first statin drug I was on didn’t work for the cholesterol and I was taken off it. Why luckily? Because it was causing the bowel incontinence we think. It stopped a few days after stopping that med. It isn’t a known side effect of that med and the Dr. was ready to scan my spine in my next scans. But, no more problems with that!

Another side effect of Lorlatinib that I’ve not heard a solution for is weight gain. Now that too is part of life, but in this case it really is a side effect. How do I know? Because I gained 9 pounds while on this medication for nine weeks, and I’ve lost at least five in the week I’ve been off it. Now, I’m hoping that with being careful about diet, along with walking and working out, that I’ll be able to control this weight gain. But I’m not going to beat myself up over it anymore than I did the high cholesterol . Out of my control.

Today I went back on that reduced dose of Lorlatinib. I’m really hopeful that it will not cause neuropathy at this dosage. Two fellow ROS1ders have been through this and the lower dose worked for them. My oncologist really pays attention to the balance of fighting the cancer and quality of life. He was concerned about how the neuropathy was limiting what I could do and affected my sleep. We didn’t discuss options for if the lower dose still causes neuropathy. Fingers crossed (and hope they don’t fall asleep)!

Gratitude and Joy

Every day I make sure to embrace the gratitude and joy in my day. It’s very easy as I live in a beautiful place with the most wonderful people, and I have everything I need to sustain a truly fulfilling life. Today my joy and gratitude is in thinking about everyone and everything that makes it possible for me to be here. I’m thinking especially about the clinical trial I’m in. Tomorrow we travel to Dana-Farber for my quick three week check-up (no scans). Dan will drive, once there I’ll have blood work and an EKG, and then meet with “my” oncologist and the clinical trial research nurse.

I’ve little idea how this particular trial drug was developed, but it is one of now several targeted therapy drugs being studied for targeting ROS1 in lung cancers and other cancers. Lorlatinib, the targeted therapy drug I’m on, hopefully does what crizontinib did for me in targeting ROS1, and then it goes where crizotinib seemed to not be able to – my brain. In my case, my brain meninges. When you think that only 1% of lung cancer patients have ROS 1, it is mind-blowing to me that there is a clinical trial at my treatment center that is specifically designed for my situation: ROS1+ lung cancer, progression to the brain with first line of treatment. A Study of Lorlatinib in Advanced ALK and ROS1 Rearranged Lung Cancer With CNS Metastasis in the Absence of Measurable Extracranial Lesions

I’m ever so fortunate to live close enough to Dana-Farber to be treated there. Participation in the trial is relatively easy for us. Driving to Boston every three weeks is doable. Clinical trials aren’t offered everywhere. This trial isn’t available to many in my situation because they are unable to make the commitments necessary, specifically traveling to the clinic site of the trial. The Bonnie Addario Lung Cancer Foundation is working to address this problem and help to make trials more accessible for patients anywhere. ALCF Centers of Excellence Thank you to them for this advocacy work.

I’m so grateful for the researchers, the doctors, the patients in prior trials, and the countless others that I’ve no idea about who have and continue to contribute to this and all the clinical trials. It gives me joy to know I am contributing to something that will help a patient in the future, whether it is living with lung cancer as a managed chronic disease through targeted therapy, immunotherapy, combination therapy, or advances in early detection or finding that real C word, cure.

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