Sharing the Journey

I can’t imagine traveling this cancer road alone.  No one should ever, ever have to.  I’m so very grateful that I’ll never have to.  In fact, my family has grown through this journey.  This struck me again today when the caregiver wife of a ROS1der posted a heartfelt and loving message to us all. While I’ve never met any of the ROS1ders, I feel incredibly close to them in the 22 months since I found the facebook group established for cancer patients who are ROS1+.  This family has nearly tripled since I found it, and is worldwide.

The ROS1der FaceBook group is a closed group (public site: ros1cancer.com), and I cannot share the details of that lovely post or anyone’s specific information, but  I can share what makes them my “family”.   Most, but not all, have lung cancer. Most, not all, have metastasized cancer.  Most, not all, have been on the drug  Xalkori crizotinib, my treatment hero, the reason I survived long enough to even call this a journey.  Many, maybe most, are younger than me, many with children at home.  Many have had treatments that I’ve not had.  Many are in clinical trials, some on the same drug as me (lorlatinb – hero drug #2), some on other targeted therapy drugs that are giving hope to ROS1ders.  All are either ROS1+ or the caregiver of someone who has ROS1+ cancer as required to be a group member.   Because of all we do have in common, there is always someone who understands, or can relate to, what another is experiencing.  Beyond that even, there’s just such a feeling of empathy and sincere caring about one another’s well being in the group.  In this group we share information, learn how different oncologists approach different topics, hear about procedures and tests as described by the patient, get the latest news on clinical trials and research, share tips about dealing with side effects and symptoms, options for and how to access healthcare/treatment, and so much more.

I’ve tried to think what it is that makes this family so very special compared to other organizations I’ve been part of and even considered family. I believe it is the never-ending optimism, the incredibly high level of HOPE, STRENGTH, COURAGE, and FAITH.  The people in this group have so many (not every!) reasons to feel and speak only doom and gloom, but not in this family.  Our fears, worries, and sadness can be freely expressed and we know they will be responded to with caring and genuine concern.  It is a safe place.  This is a difficult road to travel.  Love, compassion and support, research and answers, virtual shoulders to cry on and hands to hold are all offered.   Always, always with an eye on a future where, if not a cure, then treatment for managing cancer as a chronic disease, always HOPE.

My ROS1der family, a FaceBook group. Who knew I’d find such camaraderie in such a place.  Huh.  Another of the countless blessings that have come my way on this journey.  May every human needing such a place, find theirs.

Finding joy in the everyday, every day.IMG_3189.jpg

 

 

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 

 

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.

Too busy making pickles to worry about dying

For someone with a terminal disease who statistically shouldn’t be here, I don’t think I spend much time thinking about dying.  It doesn’t upset me to think about dying, but I’m really much more focused on living.  I’m way too busy to spend much time on the negative “what ifs” of this journey.

You see, I’ve just been given this wonderful opportunity to spend almost all of my days doing whatever it is that I choose to do.  While I may not be well enough to do everything I may enjoy or want to do or sometimes think I need to do, there is so much I CAN do.  Thanks to the doctors at Dana Farber and the clinical trial targeted therapy drug Lorlatinib, I feel quite well.

So instead of taking me down rapidly as this cancer named ROS1+ intended to do, it has provided opportunities that I may not have had or would not have taken advantage of.    These opportunities are both tangible and intangible, and infinite I imagine.  And so now a new path on the journey has just begun.

It began on that first day of school when it seemed like everyone else was going somewhere and I was not.  No real plan, no real reason to do anything in particular.  Every day could be a new adventure.  I could read all day.  That’s very satisfying.  I could sleep all day.  No, not unless I’m very tired.  Or, I could bake! Oh dear, we’ve just completely stopped eating sugar, and are reducing how much wheat we eat.  No, no baking for now.  Well, how about making pickles? Haven’t done that for years and we’ve still plenty of veggies.  Pickles it is.

Pickle making is science and art combined, a beautiful experiment each and every time, right up to the moment your guinea pigs (children, grandchildren, and other willing relatives) take the first taste.  Since I started making pickles a few weeks ago I’ve made sour cucumber, garlic dill cucumber, bread and butter cucumber, ripe cucumber, garlic rosemary tomato, garlic dill summer squash, and bread and butter summer squash.  Yup, it’s true.  I’ve been making pickles!  I’ve used tried and true recipes passed down from my grandmother or Dan’s mom, and ones I’ve found online.  Some have been quite popular, others not so much, but all have found a home.IMG_2526.JPG

Now pickle making isn’t the only opportunity I’ve taken advantage of.  I’m part of a trio (and that number may grow any day now) that goes on NOW WE CAN adventures.  Now we can, and so we are!  We’ve traveled near and far (nah, not really far), so far going to the Orono Bog Boardwalk, Common Ground Fair, and Nervous Nellie’s.  Just the names make you know we had fun! Here’s some proof!OLYMPUS DIGITAL CAMERAIMG_252822046080_10211986642014460_7954483629869582552_n

And then there’s the hundreds of soccer and baseball games I’ve been to this fall.  Last year cancer kept me from going to many of the kids’ games, but now that cancer keeps me from working, and I’ve started Lorlatinib, I have energy enough to go.  So, go we do!

And on and on it goes!  None of us know what may happen in life, and I certainly never know what news the next scan  or MRI may bring on this cancer journey, but right now I’m just too busy finding joy in the everyday things of life to worry about dying!

 

 

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.