lorlatinib – Page 2 – polepole ~ breathe

“Scans look good!”

“Stay,” commanded Lady Lorlatinib. And cancer stayed. She is mighty, that Lady Lorlatinib. Once again, after a day of tests and appointments (my sixteenth with Lady Lorlatinib) with the experts at Dana-Farber Cancer Institute, we learned that this miracle med continues to hold her hand (or foot or bum perhaps) over, clamped down on perhaps, the Switch so little ROS1 cancer cannot turn on and hop back into the driver’s seat, racing crazily throughout my body. She is fearless, Lady Lorlatinib. She does her job tirelessly, never angrily, but quietly determined as she continuously moves throughout my body to keep cancer in check.

After 25 months we work well together, my team. I’m referring now to my immediate home team of Dan, Lady Lorlatinib, and me. Lady Lorlatinib’s job is ever so important. She meets her goals each day, making her rounds tracking down cancer, saying “No no, not today little ROS1. Every day is more time for the researchers working to develop and test her successor. My job of keeping my body healthy so she may do her job seems easy compared to hers. Instead of being irritated or scared by the sometimes painful sensation of Lady Lorlatinib making her rounds, I can now smile and say, “ Oh, that’s my med doing its job.” Trade-offs you know. What price can you put on saving one’s life? My side effects are definitely manageable. And Dan, he’s the one that gets affected by those side effects the most sometimes I think. Like the mood swing side effect that perhaps we won’t highlight. That’s when Dan says, “Must be the medicine working.” But through it all, I feel loved. Just because, because we love each other (or is it one another?), never taking the other for granted, always grateful for the gift of time to be together.

Living scan to scan never gets easy for us. Even when the clinical trial appointments have stretched from 3 weeks to six, then 9, and now are 12 weeks apart (with labs midway) as mine are. In reality, cancer is with us all the time. Because it actually is. There is no way of knowing when the cancer that’s a part of me now may overpower Lady Lorlatinib, mighty as she may be. Her special power is not to kill, only to control ROS1 cancer so my cells may live on happily and free. But like any caged animal, little ROS1 seeks to be free. And little ROS1, he’s a fast driver once he hops in the seat. The times he has been let loose have been most unpleasant. So yes, I too must stay vigilant.

Our trip to Boston Thursday was uneventful – that’s a good thing! Something we do not take for granted. My appointments began with a blood draw (2 small tubes for my labs and 2 big tubes for the study) and IV put in at Dana-Farber at 8:00 AM. Then it was over to Brigham and Women’s for CTscans and brain MRI. Strange thing – at DFCI I only have one bottle of nasty drink before scans, but at Brigham I have two. Hmm… After the MRI and IV out, it was back to Dana-Farber for a quick lunch before heading to floor 10. There I had vitals done (weight, blood pressure, temperature, oxygen saturation), an EKG, and my appointment with the oncologist and clinical trial nurse. We love them both. They are caring and competent, two of the best in their professions. “Scans look good.” And on we go from there. The final part of our day at DFCI is to wait for my 12 weeks of my medication. My prescription cannot be ordered until the scans and MRI are seen, so there is always a bit of a wait. My backpack filled, we leave the parking garage at 2:30 PM, headed NORTH. Weary from the physical and emotional work of the day, but relieved and ever so grateful.

Thanks to my sister who took care of the dachshunds and goats this trip, I even got to see my morning sunrise with a little dachshund (depositing some doodoo) in the photo. (I’ll share a different one.) It’s the only time I’ve left them overnight since my last Dana-Farber appointment, so we’re all getting quite used to Mama being home 24/7. Spoiled we are, in the best of ways!

Thank you for your prayers and positive thoughts for this journey. We are grateful for the time we’ve been given and the time we have ahead of us. And now it is time to pick the tomatoes. There’s salsa to be made! Finding joy in the everyday every day.

This wonderful t-shirt was designed by one of our grandsons. The front has two hearts, one with my name and one with my mom’s. He is our heart hero and understands what it is like to undergo tests, procedures, surgeries, and to work with experts in Boston (next door to my experts). Beulah’s Babies is the name of our large family team that participated annually in the Komen race (raising funds for breast cancer research) in memory of my mom. polepolebreathe.blog – well, you’re here. And I just love the lungs for me with the pink ribbon for Mama. Very thoughtful. Thank you to him. fullsizeoutput_1626

On to Cycle 35!

My warrior drug, the fair Lady Lorlatinib Lobrena, has proven to be strong. (Yes, she has a new surname. She has been FDA approved to treat ALK+ NSCLC -not ROS1 yet- and that is how she is now introduced.) After two years she is still able to stay attentive, travel to the far reaches of my body, and sit on ROS1’s brake whenever or wherever he tries to take off in his shiny speedster. We are filled with gratitude.

I waited to see the official report on my patient portal before writing this. The report always shows up one week after my daylong appointment. But at Dana-Farber Cancer Institute we do not need to wait and worry for a week to hear the news. Here’s how Thursday, June 27 went –

We left home at 4:45 AM for the drive to Boston, arriving in time for Dan to have lunch before my first appointment. And then the fun begins:

1. Blood draw on Yawkey, floor two (two tubes for today, two bigger tubes for trial study) and IV in (for scans and MRI). When the nurse flushes out the IV, I get that taste in my mouth. I ask her how it get there so quickly, but she doesn’t really know and marvels at it with me.

2. Over and down to Dana, floor L1 to drink the nasty drink that no longer tastes so nasty – maybe because my taste buds are messed up or maybe I’m used to it now. (I take mine in water, no Crystal light lemonade for me.)

3. Dana L1 for chest CT scan and abdomen CT scan. Yup, still get that taste in my mouth and warm flush that makes you think you’re peeing. I ask the tech how that goes from your arm to everywhere else so quickly. He says he doesn’t really understand it either.

4. Across the hall for brain MRI (45 minutes wearing the hockey mask, in the tube with loud noises surrounding my head) I forget, when the technician flushes my IV, to ask about that taste arriving to my mouth so quickly. I’m sure this lady would have had an answer, but she was all business and I didn’t want to interrupt her work. I’ll have to “google” it! IV out when MRI is finished.

5. Back to Yawkey, Floor 10 for EKG. Good thing I remembered to shave my legs this time. Those sticky things come off easier with no hair. (Also good thing I’ve got no chest hair!)

6. Vitals taken (Yawkey 10). No thanks, I don’t need a kilogram to pound conversion. 97% on the O2 – Yes! Way to go little lungs! Radiation fibrosis, partially collapsed lung – you are nothing in this strong body. Must be all that hill walking to do the goat chores.

7. Appointment with clinical trial nurse and doctor. (Yawkey 10) This is where we got the great news that Loralatinib is keeping everything stable. Even though we’ve only been there five hours, and did all of the above, they had the results. My blood work report had even gone to my patient portal already. With the oncologist, fellow, and nurse, we talk about the test results and the medication side effects. Even though it is the end of their work day, they take the time to ask many questions, listen thoughtfully to my responses, and try to problem-solve any issues (ongoing or new).

8. Down to Yawkey 2 to pick up prescription.

9. Dan drives us to Seabrook, NH for the night. It is more than $100. cheaper than staying in the city, and in the summer we can do this whole trip in the daylight.

And so it goes. Until it doesn’t. I am very aware of this gift of time we’ve been given. Many with metastatic cancer do not have a specific gene fusion or mutation that researchers have found and developed a drug to target. Even when there is a TKI like I am on, the cancer often finds a workaround very quickly. The toll that the cancer and the medication take on my body is ever-present. We are always in the cancer world where words like “good” and “stable” take on a much greater meaning. But that is just how it is, and we move forward. Grateful for what we do have, what we can do. And filled with hope. Always have hope. There is always much to be hopeful about and for.

The following morning, the day we drove home in a celebratory mood, was a day much like June 28 sixteen years ago when our son and daughter-in-law were married. A beautiful sunny day, filled with hope for a wonderful future. So too was it much like a day forty-four years ago. The day Dan and I officially began our life together.

And now here I am, filled with gratitude and hope – finding joy in the everyday every day with Dan, our family, our two little dachshunds, and of course our goats.

Keep Reading Please!

Yes, I’m doing well. Yes, I know I’ve been blasting you with Lung cancer Awareness information. It’s because I LOVE YOU. It’s just one month. Stay with me here. I’ve something personal to share that you’ve not seen. Maybe it will impact your mind with visions of the power of hope, faith, and medical research. It did mine when I recently read it. It’s my CT scan report from February 25, 2016, the one that accompanies that image of my lungs that I’ve posted.

I didn’t realize it, but I was rapidly declining, dying, in late January 2016. When I got my diagnosis and we made our way to Dana-Farber, it was a whirlwind of activity to make sure that the cancer in other parts of my body was lung cancer metastasized, and to begin radiation as palliative care in the hope that it would give me some breathing relief. In the midst of all this, Dan and my sister were staying up with the medical stuff, the “kids” were taking care of things at home, and I was simply working to breathe, heart racing, one breath at a time. I think I was unaware about my actual state. How scared Dan must have been, knowing and being alone with me as I worked to breathe, heart racing, one breath at a time.

If you’ve been reading my recent updates, you know things are good. The tumor in my left lung hilum has been shrunk too small to see, my liver, colon, and brain are stable. Now read that February 25, 2016 CT scan report and be WOWed like I just was.

February 25, 2016 FINDINGS:

CHEST:

There is new complete collapse of the left lung. The primary tumor cannot be distinguished from the surrounding collapsed lung parenchyma.

The mass displaces the left main pulmonary artery and left pulmonary veins with significant decrease in caliber of the left pulmonary artery.

There is new large left pleural effusion.

There is a discrete enlarged, enhancing 2.0 x 1.7 cm lymph node posterior to the main pulmonary artery (2:29). There is also 14 x 8 mm subcarinal node. These nodes were previously difficult to distinguish on the noncontrast images from the prior PET/CT.

ABDOMEN:

Significant increase in the right hepatic mass measuring 4.5 x 3.9 cm, previously 1.9 x 1.7 cm (3:26). There is increased enhancement in the surrounding liver parenchyma on the arterial phase images. There are 2 other sub-5 mm hypodense lesions in the segment 6 that are too small to characterize.

PELVIS: There has been interval increase in the serosal deposit at the rectosigmoid junction in the pelvis measuring 26 x 23 mm(3:69), previously 18 x 15 mm (3:69).

Okay, that’s it. Were you WOWed reading that, knowing that I’m still here and functioning well three years after that? I was pretty darned impressed with what medical research has made possible. A targeted therapy cancer drug stopped the spread of the ROS1 cancer. When it crept by crizotinib (under the cover of darkness I think!), and found my brain meninges, a second target therapy drug, not even approved yet, was available to me and stopped the spread again. Hope, faith, and medical research. Wow. Research funding is needed.

I’ve been fortunate to be in the right place at the right time while on this cancer journey. I started treatment in one of the premier cancer treatment centers in the world. There, I can participate in clinical trials that are only available in a few places in the country, and unfortunately not accessible to many. Also, luckily (or thanks to hope, faith, prayers) I’ve met the criteria to enter the clinical trial. Being healthy in all other ways helps in this.

Four things I hope you’ll take from this post:

Take care of your body, listen to it, and advocate for it.
If you have a cancer diagnosis, find the best treatment available to you.
Always have hope.
RESEARCH FUNDING IS NEEDED. You can help by advocating, spreading awareness, or donating. Over 400 Americans are dying every day. Help, please.

If you want to donate to the patient-driven research being conducted on ROS1cancer, here’s my donation page: ROS1 research donation .

That’s my story and I’m sticking to it. Thanks for reading. Always have hope. Today I’m spending the day with one of the grandchildren. How lucky am I? I say, VERY! Here, finding joy in the everyday every day.

Stay Focused on HOPE

“It is what it is. Life is what you make it. When life give you lemons…” You get the idea. Don’t offer me any more of them right now. Please. And, thank you.

Today I had a meltdown, a rather big one. I share this because sometimes I think I make this living with lung cancer stuff seem much easier than it is. And that’s not fair to all those living with lung cancer or their caregivers. I have so many things that are going right on this journey and so many blessings every day. The reality is that many are really suffering and over 400 Americans die of lung cancer every. single. day.

It began quietly, building throughout the day. Dan and I were both aware it was happening. He tried to steer it in a more positive direction. I could do nothing but let it go. Every little thing throughout the day reminded me of what I cannot do because of lung cancer. (Not my usual self.) By the time I realized that my somewhat crazed state was likely my medication doing it’s job in my brain, I was in tears. Sobbing, I said over and over, aloud and in my head, “I don’t want this lung cancer anymore. I don’t want this lung cancer medicine anymore.” Well there. Okay then. Now that’s wishful thinking. Because really? Really, for me there is no choice. I can’t just wish this cancer away. Anymore than there’s a choice about aging. What’s the alternative? Death. That thought knocked some sense into me. I’m not ready to give up on life yet. I’m still a healthy, young woman, just with lung cancer – my first brilliant oncologist Dr. Gandhi told me so! I wiped my tears, apologized to Dan, who held me through it all (as he always does), and moved on with my day.

Tonight I’m back to normal, my normal. Living well with lung cancer. And I know my medicine, the fair Lady Lorlatinib, is reaching and working in my brain. I don’t mind that my fingers and hands feel prickly as I touch the keys. Neuropathy, it’s a brain thing. It’s like I told my oncologist about my odd headaches, vision flashes, and messy speech – it means the medicine is working in my brain. Lady Lorlatinib is working very hard to contain and control that nasty little ROS1 riding around in his sports car throughout my body. I am grateful for this powerful drug and the research teams that identified ROS1 and treatments to slow down that speedster. Tonight, why, I even laughed when I put my cup into the cupboard to warm instead of the microwave. Huh, no buttons to push. Oops! (And no, everyone doesn’t always do that – I never did…)

My purpose in sharing this post is why I share my journey at all – to help people understand the metastatic cancer journey. To inform people who are well, so they may reach out to others with compassion. To inform others with cancer about the importance of finding excellent treatment, keeping your body healthy, and living with peace and hope. For me today was just a blip on the screen. Kind of like those teenage PMS days. The real me – I am at peace with my life, filled with hope, and surrounded by love. I pray for that same state of being for all who travel this road.

This is Lung cancer Awareness Month. Beware! And BE AWARE. If you have lungs, you are at risk for lung cancer. Early detection can mean possibly being cured, saving a life. Detection and genomic testing can mean a targeted treatment, saving a life. Research funding is needed so that the heroes can do their work, finding treatments, causes and preventions, and cures.

Me. Finding joy in the everyday every day, in the barn with the goats, snuggled on the couch with the three little dachshunds, just being here with Dan, in our home on the side of the mountain. Thanks for listening. Your prayers and thoughts of strength and positive energy for all who have lung cancer are needed and appreciated. Love to all.

Good news Health Update

Chest and abdomen scans, brain MRI, and blood work all look good! Wow, that means the cancer that is there is stable and the drug isn’t messing with my body badly enough to need to make changes. Now, unless I become symptomatic, we can breathe a sigh of relief for another nine weeks. That takes us through the holidays all the way to my third cancerversary! Yup, three years since the big blindside. Three years of figuring out how to live well with metastatic lung cancer. Three years of living!

Below: February 2016 and May 2016 after two months on my first targeted therapy, crizotinib.

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Yesterday at 3:30 a.m. we left home to drive to Dana-Farber Cancer Institute for the above tests and an appointment with my oncologist and clinical trial nurse. Big traffic jam getting in, but 6 hours later we arrived, parked, made our way to Dana L2 (I think). I got my beverage of the day in prep for the scans. Then blood draw (extra for the study) and IV in for scans. Scans done and in for brain MRI. Ear plugs, bean bags around my head, hockey mask on, and slide in for a noisy, long nap. Did I say it was long? Oh yeah, I did. IV out. Then back to Yawkey and up to 3 for a very quick cafeteria lunch, and on to the 10th floor. Vitals done (anyone wonder why the blood pressure might be up), EKG, and off we go to the patient room. Whew! In comes a fellow (yes, a fellow fellow) and the nicest trial nurse you can imagine. Dr. ? (the fellow) told us the scans looked good and that Dr. J, my oncologist was waiting for the results of the MRI and would be in shortly. We talked about my neuropathy, and my theory that the tendon inflammation I have (hands and feet) is related. No one can explain it to me, still. After listening to my heart and breathing (all good!), the fellow left, we talked with Nurse D, and then soon the Fellow and Dr. J were back. The brain MRI looked stable too. So, good news all around.

Dr. J suggested I might want to reduce my dosage again to see if that helped with the neuropathy. Early on in the trial we reduced the lorlatinib from 100mg to 75mg for that reason. I said, “No thanks, I don’t want that nasty beast back in my brain.” (Not that it is totally out.) We talked about it a bit more, and Dr. J said, “So you can live with it this way?” And of course I replied, “You used the key word there. I choose to live. I’d rather not take a chance on it now.” And so, I remain at 75mg.

Finally it was off to floor 2 to wait for the cancer fighter, our Lady Lorlatinib. I imagine her dressed in white this day for Lung cancer Awareness month, riding from the heavens on Pegasus. She is a powerful ROS1 cancer fighting targeted therapy drug – that I know. Whenever I feel her working in my brain, I am grateful. Grateful to ALL that make it possible for me to live.

When everything was done, it was only 2:45 p.m. We find the car in P5 and head to Seabrook (much cheaper place to stay), an hour away. In good traffic that is. Two hours for us yesterday… Dinner and off to sleep. Up at 5:00 a.m., a stop for breakfast, and home before 10:00 a.m. A whirlwind 30 hours! For both of us – thank you Dan.

And now here I am on the couch with the dachshunds, bird feeders filled! Finding joy in the everyday every day.

ROS1ders are raising research funds to learn more about, and to find treatments for ROS1 cancer. If you can help us, just follow the link below. Thank you.

Donate to ROS1 cancer research

Health Update Sept. 6, 2018

Nothing but smiles! You know it’s good news when at the end of everyone’s long day, we’re all smiling – oncologist, patient, and caregiver. Worth that traffic, worth staying overnight, worth going through a day of tests every nine weeks (lots better than the 3 at the start of the trial). “Everything looks good. Your brain MRI looks great!” Wow, what more can we hope for in a visit. Feeling grateful and blessed.

Yes, I still have metastatic (stage IV) lung cancer. Yes, it is still hiding out in my lung, my liver, my colon, my brain. We coexist in one body. We will for life. But, oh what a great life it is! Since my first targeted therapy (my superhero Crizotinib Xalkori) in March 2016 to now I’ve learned to find joy in the everyday aspect of living in ways I don’t think I’d have taken the time to if not for this ROS1 cancer. Since the Lady Lorlatinib (my clinical trial drug) charged in (July 2017) to protect my brain meninges as well as the rest of my body, I continue to not only survive with metastatic lung cancer, I’m LIVING well. I know I am lucky that I’m able to simply enjoy my days, at home, free from fretting about needing to work, free to do as much (or as little) as I feel like doing. My heart aches for those whose circumstances don’t allow them to do this.

I continue to volunteer for Lung Cancer Alliance as a phone buddy and as a patient representative on a grant advisory board, as well as on an advisory board for the Maine Lung Cancer Coalition. Also, as a ROS 1der, I try to spread awareness about the Global ROS 1 Initiative ROS 1 Patient Driven Research and the need for research funding so we may work toward the next treatments (as resistance occurs and the targeted therapy becomes ineffective), and ultimately a cure in the future. Donations (ROS1 research donation) and ideas for raising funds and funding sources are welcome.

Thank you for your continued interest in this cancer journey, your prayers and positive words of encouragement. Time for me to pick some peppers and tomatoes, maybe make a little salsa. For the next few weeks I’ll be finding joy in the everyday, every day at our Salt Pond camp with Dan, the three little dachshunds, and… our two Nigerian Dwarf goats and two Tennessee Fainting goats (yup, it’s true, the herd grew.).

Health Update July 3

Health Update July 3, 2018. “Scans look good! Blood work is all the same. How are you feeling? What have you been up to?” This is how the oncologist (one of my heroes in this journey) comes into the the room. “Phew! I feel great now,” I think. Moments before Scanxiety had taken a stronghold over my usually calm mind. It’s nerve-wracking, this journey in which the things that are likely or even certain to happen eventually (like drug resistance) may carry with them few to no options at this moment in time. Time on a drug means time for researchers to work their magic and develop the next line of treatment.

Just to recap this journey – diagnosed Jan. 2016, metastatic non small cell lung cancer -tumors in left lung hilum, liver, pelvis. (NO. I never smoked. Silly you, silly me. I HAVE LUNGS!) Okay, enough on that. Radiation to lung as palliative care. Genomic testing showed that the ROS1 mutation is driving this cancer. March 2016 – First wonder drug crizotinib – lung tumor can’t be seen, others stable! March 2017 – nasty beast crept into my brain meninges where crizotinib couldn’t go. But while the fair lady crizotinib was saving my life, researchers were developing her stronger, more versatile friend Queen Lorlatinib. July 2017 – entered Lorlatinib trial. Lucky to be able to do that at my treatment center. (That’s why we travel to Boston for treatment, they’ve kept me alive.) Clinical trial means trips to Dana- Faber every three weeks, then six, now every nine weeks. Both drugs are oral, taken once or twice a day.

Today marked a year on lorlatinib. My appointments began with a blood draw and IV inserted. For the first time, the first vein didn’t work, so I got stabbed in both arms. Next up was the brain MRI. The techs complimented me on how well I did. “Practice, lots of practice!” I replied. When they apologized, I said, “Oh no, it just means I’m still here and that’s a good thing!” Then I got my yummy drink for the CT scans of my chest and abdomen. All the while Dan waits patiently. After these tests in Dana, we walked through to Yawkey for lunch and then up to floor 10 for my EKG and Dr. appointment. Here’s why the Scanxiety set in at that moment. After doing vitals (good, oxygen a little low), instead of doing the EKG, the nurse took us through a different door than usual to a room to wait for the Dr. This weirded me out big time – not my routine, not his room, what’s up?! Nothing, it turns out. Sorry that I scared us both. Different room probably because Dr. Janne doesn’t usually see patients Tuesday, but was going to be away Thursday. They truly forgot my EKG, maybe in their excitement to go home for the holiday. Did it after the appointment, and it was fine too. All good, see you in September! Camp Gramma is good to go for the rest of the summer!

Now, I write this blog for a few reasons: to keep those who care updated; it’s therapeutic for me; and to inform people through sharing my experience, and advocate for those on this journey of living with metastatic cancer. I know I’m lucky to be alive. That being said – it’s not like someone chooses to have metastatic cancer. I can now though help others by sharing – thus bringing purpose to this experience. So when I get wordy or meander off topic, it’s likely meaningful to me for one of the above reasons. You get to choose – don’t read it, read the first paragraph to see that all is okay, read until I wander, check out the tags and see if you can tell why I chose them, or read it through. No quiz at the end!

Today too I had to re-sign my clinical trial agreement as there were some changes. One is great news I think for my fellow ROS1ders. The trial is expanding from 30 individuals (with ALK or ROS1 NSCLC, brain progression) to 48. More lives saved! And the other reason is that now the side effects are better defined, and one with a small chance of happening is a very serious heart condition. But seeing the list of side effects brings up a part of this journey that I touch on, but try not to dwell on. It is though what I and anyone else on these drugs experience and some we will deal with for the rest of our lives, however long that may be. Keep in mind that before cancer I took no daily medication, and have no other health issues. Here are the risks on the lorlatinib list that I experience: increase in cholesterol and triglycerides (take a statin now for that); damage to nerves in arms, legs, feet, and hands (tingling, numbness, pain, tendon inflammation now in hands and feet) – drug is reaching my brain!; mood changes, including irritability (I don’t see it much, but I’m pretty sure Dan does and helps me through it) – drug is reaching my brain!; slowing of speech – drug is reaching my brain!; swelling of legs; fatigues; weight gain (can’t change this no matter how hard I try). There are others that I don’t experience. My strategy in thinking about this is to do everything I can to keep my body and mind as healthy as I can. No sense in thinking too much at this point as to what damage the treatments and the tests (at least 14 brain MRIs, 14 CT scans in just over a year) are doing. Actually the idea of dealing with the long term effects simply gives me hope that there will be a long term in which to deal with them.

Always have hope, faith that there’s purpose in your journey, and love for and in your life. That’s it for now – I think my mood’s about to change! And laughter, always have laughter in your life. Maybe some children, kids, and dachshunds too! Thank you for your thoughts, prayers, and love. Love to all. Enjoying the everyday, every day here, there, and everywhere – that’s me.

Camp 2018

Keep writing, your voice will be heard by someone, sometime.

Keep writing, your voice will be heard by someone, sometime. I wrote a letter to the editor earlier this year. I wrote again and it was published this time. There’s a limit to the number of words, so I didn’t include everything I wish I could have. Also, some of the links aren’t live and read as words only, but it was published!

Free ME from Lung Cancer Free ME from Lung Cancer , a Maine nonprofit has funds for single family home radon abatement. Testing your home is easy and cheap. Abatement is done professionally and may be easy and inexpensive or it may be $5000. Thankfully, there is help for those who need it. There are a limited number of home abatement “sponsorships” through Free Me from Lung Cancer.

Letter to Ellsworth American: Don’t Ignore that Little Cough-Cough

Health Update

Another good news health update! No new mets anywhere, no progression anywhere, AND a little improvement in the meninges! No sparing the exclamation marks in this post.

We love Dana-Farber Cancer Institute! For anyone wondering where to get exceptional cancer care in New England (and maybe the best in the world!), I so recommend Dana-Farber. For us it is a five hour drive, but what is that really in the big scheme of life if it can save your life, prolong your life, improve your quality of life – you get the idea. And, it is the only healthcare facility I’ve been to where you can have blood tests, CT scans, brain MRI, and an EKG in a span of two hours, and two hours after that your oncologist has the results to share with you. That oncologist only treats patients with your type of cancer, and likely is a researcher and/or teaches at Harvard Medical.

Lorlatinib, my current heroine fighting the battle for me while I keep my mind and body healthy, is doing her job well. Last July I began on 100mg daily, but fairly early on got such bad neuropathy that the dosage was reduced to 75mg. That reduction, acupuncture, and learning how to deal with neuropathy all helped to make it much better than just manageable. I have wondered if I should try to go back on 100mg for the best chance of the most lorlatinib reaching the brain. (It is thought that it cannot reach the brain as well as other parts of the body. At least that’s my understanding from reading research study materials on the phase 1 trial.) I asked today about increasing and got a “As long as it is working, we don’t want do something that may increase the neuropathy.” I didn’t get a “no, never”, so if I do have brain progression in the future, that may be an option.

Being in a clinical trial is an honor. At today’s appointment lots of questions were asked about side effects and other things, I always have to complete a questionnaire, and I’m required to keep a medication log. When they take blood for tests, extra vials are filled for the research. I get to be part of something that may help change how lung cancer is treated. The hope that it will someday soon be a manageable chronic disease is real.

The known Lorlatinib side effects of high cholesterol and triglycerides, the neuropathy, and fatigue (cancer and the drug both are likely culprits) are really not impacting my quality of life. We’ve made adjustments for sure, but my days are great. For someone with stage IV lung cancer with metastases in her liver and leptomeninges, I’d say I’m doing fantastic. I’ve got a lot to live for and look forward to, and every day is one to be enjoyed and be grateful for.

One last word about Dana-Farber – HOPE. Kind and patient people who instill confidence and offer hope, always. Hope.

Finding joy in the everyday every day, and ever so grateful to be here to do so.

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Normal must be overrated

Who really wants things to be normal anyway? I never did, but then I didn’t really need normalcy before. This normal isn’t new or normal in the typical sense, but it is my normal as I live with metastatic cancer. And live well I must say. To do so I’ve needed to develop many strategies and work arounds. And I’ve had a lot of help. But it’s all definitely worth it. Quality of life really matters. Maybe some of my strategies will work for others.

Learning and remembering your energy limits is important. Kind of tricky too as it’s a moving target. There are days I have great energy and some that I have a deep, deep odd tiredness. Most days though I wake up, get myself going and go strong until noon. After that? Anybody’s guess. I learned this week that I’m no longer able to push through it like I always did in my old life. When I’m done, I’m done. Kind of like a baby. And that is okay! I prioritize and sometimes have bonus time for something more.

“Love what you do. Do what you love.” I’ve always believed this makes great sense. Well there’s lots of things I love, but can’t do anymore, or not yet in this “normal”. That’s okay too because I’ve discovered I love lots of things. So I’m focusing more time on the ones I can still do (like photography, being in nature) and maybe just adjusting how I do them. And I’m learning and doing new things too! Things like writing a blog! I sure have more time to read now, and I love to read pretty much anything. I have four books going right now; one fiction, two health related, and one nonfiction nature-based. None on education -that’s a first!

Shortness of breath, my huffing and puffing. Haven’t really found good strategies except to go slow and steady. Not likely to do much running this spring, but I am determined to do more walking in my new OrthoFeet sneakers.

And then there’s the digestive system issues. When I first started crizotinib I took a few different meds before my system could tolerate it being there. Imodium went with me everywhere because I never knew when I’d have a bout of diarrhea. And no advance notice usually, so pads or disposable underwear, extra clothing, disposable wipes. Carried my backpack everywhere. That doesn’t seem normal, but it became routine. In addition to the clothes I try to remember to carry food that I know I can eat in case I can’t eat what is available. With Queen Lorlatinib, my current targeted therapy drug, the digestive system issues are much less for me at this time. (Fingers crossed!)

Lorlatinib brought some new challenges that I’ve referred to earlier. One, neuropathy, is common for people on chemotherapy drugs and for people with diabetes. As much as I love to go barefoot, I cannot now, even in the house. Anyone who has an inkling that they have neuropathy in their feet should start wearing shoes or slippers ALL the time. I learned the hard way. If you have hand neuropathy, try acupuncture – helped me tremendously. I tried some of the ointments and cannabinoid oil, but I haven’t found something yet that I can say gives me relief from neuropathy. Wearing gloves for any work and even driving, and keeping my feet well padded have worked best. And, I just don’t stand still for long periods of time or do lots of peeling veggies as those as things that are sure to bother. I’m so fortunate that I don’t have to try to work. Luckily I’m a good sleeper, so it doesn’t bother too much at night. Oh yes, and ignore the feeling that a tick is crawling on your ankles. Or maybe not. Probably just neuropathy, but best to check. I spend a lot of time looking at my ankles!

Weight has been an interesting problem over the past 2 years, four months. After the fire in the fall of 2015 I decided to only buy what I absolutely needed for clothing. Then as I became sick I began to lose weight. By the time I started on crizotinib (March 2016) I’d lost more than 30 lbs. and I’m only 5’0″ and wasn’t ever terribly overweight. Between cancer taking its toll and radiation doing a number on my esophagus, I had a few months of not eating much, eating mostly liquid form foods, etc. And, as far as clothes went, thanks to radiation I couldn’t stand anything near my neck or wear a bra. So my daughter bought me some size small stretchy pants and v-necked loose tops. That’s been my preferred wardrobe ever since. I eventually gained all that weight back when on crizotinib.

Weight gain is common with these drugs, but I had no idea what I was in store for with Lorlatinib when I began it July 2017. Everyone I know on this targeted therapy drug (still in clinical trial) has had this problem to some degree. I started out gaining a pound a week. Yes, one pound per week! Eeek! And it was not simply that I was feeling better and eating more, or that I wasn’t able to exercise enough. But, thanks to the stretchy clothes I just moved to medium, keeping in mind my “fire resolution” and bought only what I needed. I was beginning to feel uncomfortable with the extra weight. By January I had gained 20+ since beginning Lorlatinib. July to January, as much as my pregnancy weight gain. From March 2016 to January 2017 that’s a 50 lb weight gain. (Both pregnancies combined!) Without even trying to lose the 30 or gain back the 30 plus 20. Finally, in January the trial nurse mentioned someone having success with a paleo diet, so I tried that. (I wrote about it earlier.) Paleo works for this! I immediately lost 8 pounds and haven’t gained more. As long as I feel “well” I can do this. As I’ve learned, weight loss from cancer and treatment AND weight gain as a side effect are common. I work with and around this by eating well and wearing my comfy clothes.

Finally,while trying to understand this “normal”, I think maybe the greatest lesson and the greatest blessing that I’ve gained from this journey is that it is more than just okay to let or even ask others to do things for you. I couldn’t do anything for someone else and very little for myself when I was so very ill. That’s when I began to truly understand what gratitude and expressing your gratefulness does, not just for you, but for those you’re grateful to. People who care want to do things to make your life easier and brighter when you are struggling with something in life. I still want to do everything for myself, but I don’t feel badly asking for help or letting someone else do what I don’t have energy or strength to do. I feel loved and grateful. And I like to look for things I can do that will brighten their days.

Late this week I go to Dana-Farber for scans, blood work, brain MRI, EKG, and oncology appointment. Dan will drive and wait patiently for me every step in the day. I will post an update, hopefully by the weekend. The prayers,positive energy and thoughts of all who follow this cancer journey give me strength.

Baseball and softball have started for the children. Fun times for grandparents. Finding joy in the everyday every day here with Dan, the family, the 3 little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.

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