Dana-Farber – Page 2 – polepole ~ breathe

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.

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

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.

March 1, 2018 Health Update

The good news is IT’S ALL GREAT NEWS! No, I’m not cured. No, I’m not NED (no evidence of disease). Don’t waste your time worrying about those things. According to “my” oncologist at Dana-Farber, my brain MRI, CT scans of my chest and abdomen, EKG, and blood-work all look GREAT. I won’t see the reports myself until next week for details, but GREAT will do.

Our morning started with a blood draw and IV at 6:30 AM at Dana- Farber. (Sent a pic of IV to our granddaughter in nursing school who just successfully inserted her first IV) Then, after a brisk walk across the bridge, I had the brain MRI and the CT scans at Brigham and Women’s. After those, it was a race back to Dana to the 10th floor for an EKG, vitals check, and appointment with the doctor and the clinical trial nurse. We finished all this at 9:55 AM. Record time I’d say, thanks to a new patient coordinator who booked my appointments overlapping one another. Oops! Everyone made it work just fine.

After the appointments we waited 45 minutes for my wonder drug Lorlatinib. It is she who is in there day after day tracking down that nasty ROS1. Lorlatinib is relentless in her work. I am grateful to those who developed Lorlatinib. With each drug developed we get closer to the time when lung cancer is managed as a chronic disease, until there is a cure. I’m grateful to all the brave patients in the first trials of this and other drugs being developed for ROS1.

I continue to work on my part of the deal with Lorlatinib, keeping myself healthy. This work includes: acupuncture for neuropathy, paleo diet for the nonstop weight gain (now stopped), immune system support (advised by acupuncturist, approved by oncologist – some supplements were nixed by oncologist due to unknowns of drug interaction), and energy healing meditation/practices. Soon will be increased time outside. It’s a full time job, staying healthy, but it’s paying off. I’m not just alive, just surviving, I’m thriving, and feel well – all things considered.

So, after a whirlwind trip to the city (traveled there yesterday), we arrived home at 4:30 PM. Dan does a lot of driving and waiting. It can’t be easy. We’re a team, he says. He’s a wonderful man. And now here we are, back to finding joy in the everyday every day with the family, three little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.

Thursday, December 28, 2017 Update

Great news, again! Right up there with some of the best news I’ve had since beginning this journey. Writing this in our hotel room, a block from the most wonderful cancer institute in the world, Dana-Farber Cancer Institute. Wonderful: inspiring delight, pleasure, or admiration; extremely good; marvelous. Yes, wonderful! Regardless of the news I might receive from them, they certainly have inspired admiration from me, data shows their work is extremely good, and the people we’ve met there are delightful and quite marvelous in their treatment of patients and caregivers.

Back to my news! Stable from the neck down, AND (drum roll please) an 84% reduction of the nasty beast in my brain meninges since beginning my second wonder drug Lorlatinib in July.

Today was another long day for us. We stayed in Portland last night to make sure we would arrive at Dana-Farber for a 10:30 AM start. At 10:30 PM the fire alarm went off in the hall of the motel last night. Some kid had burned his popcorn in a microwave. We didn’t have to go outside luckily. Today began with “free” breakfast at 6:00 AM, followed by a very quick 2.5 hour drive to Boston. No morning traffic – unlike any other day we’ve gone. Vacation I guess. We even parked on P4 instead of P6 of the underground parking garage!

My appointments were all the “usual”: IV in, blood draw, CT scans of chest and abdomen on L1 in the Dana Building, brain MRI and IV out on Dana 3 , grab some lunch (Yawkey 3), check vitals, EKG, Dr. appointment (Yawkey 10), and wait for medication (Yawkey 2). Done at 4:00 PM. Nothing to it!

Here’s more great news – I am scheduled to return to Dana-Farber on March 1, 2018. Nine weeks!! Yes, nine. That is the longest between appointments in the 23 months I’ve been a patient at Dana-Farber. Wow! Now, will I be nervous about that? I don’t think so. I know my body, and the difference between symptoms and side effects pretty well now. And, my clinical trial nurse and oncologist are just a phone call or 5 hour drive away!

Hey, I forgot something very important in my post about Procedures and Tests ! When they put the contrast dye in your IV during scans, you get the warm feeling and would think that you wet yourself if not forewarned. Thought about that one today when…

For me, 2017 has been the year I began to learn to LIVE with metastatic lung cancer, helping to create new statistics, and bring hope to those diagnosed with this disease that still currently kills 433 Americans every day. We can, are, and will continue to do so much better. There is great hope for the newly diagnosed.

Happy New Year to all our family and friends, new and not so new! Your positive thoughts, love, and prayers continue to help give me the strength needed for this journey. Please test your home for radon this year if you’ve not yet done so.

Looking forward to us going home to the dachshunds and goats, comfy and cozy for the winter, feeling grateful, and finding joy in the everyday every day!

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.

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