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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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!

 

Procedures and Tests, so far so good

LONG POST- NOT URGENT.  Information sharing!

Since January 3, 2016 I’ve had a few procedures and many tests (scans, MRIs mostly).  I thought it might be helpful to describe these from the perspective of a person who doesn’t really get too worked up about things like this. Me.

You can read the description of any procedure and test online, and I think that’s a pretty good idea.  I mean, how is one to know if you have any questions if you really can’t picture what’s planned?  I imagine we’ve all had the experience when the technician or doctor asks if you have any questions, and you’re still stuck on the first thing they said about what was about to happen. But, if you prefer just going with it, no need to check it out first online.  And, when you’re desperate for the information the procedure or test might provide, you may truly want to just go with it.  In either case, if you do go online to check out how the procedure is done, don’t  get stuck on the risks.  You’re going to have this done, the doctors (and you by consent) have determined that the benefits way outweigh the risks.  And seriously, in my case, it’s been a “no brainer”.  I know some of what I’ve had done can cause cancer, but I’ll take living long enough to participate in a study on that when it does catch up with me.

So I’ll try to do this chronologically, beginning with the lifesaving x-ray. The one that showed my tumor was done at a walk-in clinic on a winter Sunday afternoon.  It’s an “electromagnetic wave of high energy and very short wavelength, which is able to pass through many materials opaque to light” that’s used to take photos of what you can’t see. You lie on the table, the tech leaves the room (to protect themselves) and click, click – that’s it!  Quick, easy, painless, and oh so informative.  Why, it can find broken bones and lung tumors!

Got a “cough, cough” for months?  Ask for an x-ray just to be sure it’s not a tumor.  Low dose CT scans are available too, especially if you are “at risk” for lung cancer.

CT scan (sometimes called CAT scan) “A computerized tomography (CT) scan combines a series of X-ray images taken from different angles and uses computer processing to create cross-sectional images, or slices, of the bones, blood vessels and soft tissues inside your body. CT scan images provide more detailed information than plain X-rays do.” (Mayo Clinic)  Well, I guess it’s just a fancy x-ray that gives more detailed information. Mine are all “with contrast” – an intravenous and/or an oral  “dye” is used to enhance the scan/x-ray. My first one in this journey was at my local hospital.

I’ve had many CT scans of my chest and abdomen at a few different clinics/hospitals.  At Dana-Farber they trust you to come clothed in “NO metal” clothing.  Sometimes they ask about underwire bras, zippers, or pocket contents, just to be sure and safe.   Here’s how my CT scan appointments have gone.  Nothing to eat, and only clear liquids for two hours before.  If you are having oral contrast and haven’t gotten it ahead of time, you arrive an hour early, check in and get your tasty drink. (It’s not so bad, sometimes seems like a lot.)  At some point a nurse/tech will take you to put in an intravenous catheter (unless you have a port) in your arm/hand.  It is a small, flexible tube put into the vein so the contrast can be Putin or blood can be drawn out.  The vein inside my right elbow is great, so mine go there, get taped on, wrapped, and are used for the CT and any other tests, blood draws, etc. that day.  Nearly painless, just a little jab.  Next! At some places I’ve had to undress, leaving just my underwear, socks, and shoes on, and put on a johnny (short gown fastened in the back) for the scan. Then you go into the scan room (which is probably cold) and lie on a table/bed with a big machine shaped like a donut around it.  It’s very open.  You lie still and move to the donut, hold your breath for about three seconds, and move out.  A couple pictures and then the technician comes back in to start the IV contrast,  He/ she returns to safety, two more pics, and then they flush out the IV or take it out if you don’t need it again that day, and you’re on way. Drink lots of water that day to flush the contrast out of your system!

This explanation from radiology info.org is great for understanding CT scan, MRI, and PET scan process.  “The CT scanner is typically a large, box-like machine with a hole, or short tunnel, in the center. You will lie on a narrow examination table that slides into and out of this tunnel. Rotating around you, the x-ray tube and electronic x-ray detectors are located opposite each other in a ring, called a gantry. The computer workstation that processes the imaging information is located in a separate control room, where the technologist operates the scanner and monitors your examination in direct visual contact and usually with the ability to hear and talk to you with the use of a speaker and microphone.”

Bronchoscopy That first CT confirmed that I had a tumor, so I went to a pulmonologist (lung specialist) who decided to do a bronchoscopy: “an endoscopic technique of visualizing the inside of the airways for diagnostic and therapeutic purposes. An instrument (bronchoscope) is inserted into the airways, usually through the nose or mouth.”  This was a relatively easy (for me) day surgery procedure.  I was given something for anesthesia – “In the practice of medicine anesthesia or anaesthesia is a state of temporary induced loss of sensation or awareness.” ( I don’t remember this, I guess it worked!)

A tube, with an instrument in a smaller tube inside the larger tube, was put in my mouth and into my lung.  The doctor used the instrument to look around and to snip some tumor tissue for pathology.  I think this process took less than an hour.  I woke up in recovery, was told I may have a sore throat and to call if any coughing up blood, and home I went. After sleeping off the anesthesia, I was fine (from that anyway), no sore throat even.

The pathology report took many, many  days (from this facility anyway), and the sample ended up being sent on to Brigham and Women’s because it was “inconclusive, rare, abnormal” and need further examination.  (What?!?  Now you begin to understand why we took ourselves to Boston.)

After seeing the tumor, the pulmonologist decided it was a good idea to have a Brain MRI and  PET scan (To see if I “lit up” anywhere else. Places where there are cellular changes “light up” in the image.)

Brain MRI (Magnetic Resonance Imaging) “Magnetic resonance imaging (MRI) of the head uses a powerful magnetic field, radio waves and a computer to produce detailed pictures of the brain and other cranial structures that are clearer and more detailed than other imaging methods. This exam does not use ionizing radiation and may require an injection of a contrast material called gadolinium, which is less likely to cause an allergic reaction than iodinated contrast material.” (compared to CT scan with contrast) radiology info.org

I’ve had about 10 of these now, so here’s a description from an earlier post, with additional thoughts. “This means taking off everything but my undies, putting on a johnny, having an IV put in . Then into the cold room, and getting up on the table in the right spot, cushions beside my ears, a “hockey mask” clamped over my face, and into the tube I slide. Oh yes, you can choose music or earplugs to slightly deafen the sound.  I choose earplugs now.  (Music on that first one.) And, you are given a bulb to squeeze if you need anything (because of course the techs are safe away in another room watching you). The techs talk some to let you know how much longer, etc.  Probably if you’re not still, they tell you.   Halfway through I’m slid out to put the contrast dye in my IV. After listening to some pretty strange and very repetitive noises for 40 minutes, I get out of the tube, have the IV removed, dress, and go.” Some people have difficulty with the idea and feeling of having the open mask over their face, the closeness of the “tube”, and the noise.  Luckily for me, I don’t.  I can only say that the techs are just a squeeze away, however snug it is when you go in won’t get any snugger, focusing on breathing slowly is calming.  I count the repetitions of the different sounds to pass the time!

PET scan (Positron Emission Tomography) “Positron emission tomography (PET) uses small amounts of radioactive materials called radiotracers, a special camera and a computer to help evaluate your organ and tissue functions. By identifying body changes at the cellular level, PET may detect the early onset of disease before it is evident on other imaging tests.”radiology info.org  I’ve only had one of these.

For a PET scan you can have nothing to eat and only clear liquids for a few hours before. You can wear no jewelry, and they’ll ask about metal in your body (true for all scans, MRIs).  You CAN leave your wedding ring on! You are asked to remove all clothing except undies and put on a johnny.  This procedure requires an  IV for the radiotracer.    The radiotracer is injected and you need to just sit and relax for about an hour, I guess while it travels through your body. Then you go into the room for the scan, and as  I remember,  it is like a CT scan (above)  from there, except it looks at your whole body (not your brain) instead of a specific area.

Because the PET scan showed enhancement in my liver, one of the first things that happened after I went to Dana Farber was a liver biopsy to make sure that it was lung cancer metastasized to my liver and not another cancer or something else.

Liver Biopsy This procedure was much easier than I thought it would be. It is done as outpatient/day surgery. I had mine at Brighams. No food or drink after midnight, undressed/wear johnny, IV put in.  For this I was sedated, but fully aware. ( If I had been too nervous, talkative, agitated- I’m sure with the push of a button, I’d have been asleep.)

The liver biopsy is a needle biopsy.  The procedure is ultrasound guided. “Ultrasound imaging uses sound waves to produce pictures of the inside of the body.  After you are positioned on the examination table, the radiologist (a physician specifically trained to supervise and interpret radiology examinations) or sonographer will apply a warm water-based gel to the area of the body being studied. The gel will help the transducer make secure contact with the body and eliminate air pockets between the transducer and the skin that can block the sound waves from passing into your body. The transducer is placed on the body and moved back and forth over the area of interest until the desired images are captured.” radiology info.org

So, while you are lying on your back, the doctor doing the procedure is standing very close to your right side, and does the above process to your abdomen to get a clear look at your liver.  Then he/she cleans the area (just below the right rib cage) and gives you a shot or two of novocaine to numb the area.  Next he makes a small incision for the needle.  You hold your breath (no, really) while he inserts a long needle and gets what he needs, and pulls the needle out. You then go to the recovery room where you have to lie still on your right side (due to bleeding possibility) for several hours.  Then, when we were done I was tired, a little sore where the incision was, and couldn’t lift over 10 pounds for a week.  Really much easier than anticipated and quite painless.

Okay, in trying to think about what else I’ve had for procedures, I think the only other besides radiation treatment, which you can read about at length in an earlier post, is a lumbar puncture (aka spinal tap) which I needed after the cancer crept into the meninges.  This was done to see if the beast had spread into my entire central nervous system by looking for cancer cells in the spinal fluid. (The fluid that’s drawn is lab analyzed.) It is a test that isn’t too effective (reliability, 41% sensitivity), but I guess it is a simple way to look for cancer when there’s that concern and no related symptoms.

Lumbar puncture I had mine done at Dana Farber. No special prep, just changed into a gown (I like the idea of wearing a gown better than johnny.) Here’s a good description of the procedure from mayoclinc.org . “You lie on your side with your knees drawn up to your chest, or you sit and lean forward on a stable surface. These positions flex your back, widening the spaces between your vertebrae and making it easier for your doctor to insert the needle.Your back is washed with antiseptic soap or iodine and covered with a sterile sheet.

During the procedure

  • A local anesthetic is injected into your lower back to numb the puncture site before the needle is inserted. The local anesthetic will sting briefly as it’s injected.
  • A thin, hollow needle is inserted between the two lower vertebrae (lumbar region), through the spinal membrane (dura) and into the spinal canal. You may feel pressure in your back during this part of the procedure.
  • Once the needle is in place, you may be asked to change your position slightly.
  • The cerebrospinal fluid pressure is measured, a small amount of fluid is withdrawn, and the pressure is measured again. If needed, a drug or substance is injected.
  • The needle is removed, and the puncture site is covered with a bandage.”

I was sitting, leaning forward.  The doctor did spend quite a bit of time at the start tapping my spine with her hand and marking me with a marker.  She wanted to find just the right spot to slide the needle to withdraw the fluid.  While the needle was in I did feel quite a bit of pressure, but not pain.  When all done I laid still for 20 mins and then was pretty quiet for the rest of that day and evening.  I had no lingering effects from this.  And, when lab results were back – no cancer cells were found in my spinal fluid.  (Since then I’ve been put on the targeted therapy drug Lorlatinib and SHE has reduced the cancer in my meninges by 75%!

I know I’ve said this before, but it is true – I’m lucky.  An acquired cell mutation caused my cancer to take off and spread, but it is because of this that I can take a targeted therapy drug – a pill(s) once or twice per day.  The drug acts as a guided missile, attacking only those mutated cells, not all cells like chemotherapy does.  So, I know that I’ve not had some of the tests, procedures, and treatments that many lung cancer patients have to endure.  I hope that this field is changing so rapidly that soon we all will be able to treat lung cancer as a chronic disease, not a terminal one, until a cure is found.  At just under two years since diagnosis, I’m am blessed to feel well enough to enjoy life with family and friends.  Feeling joyful and filled with gratitude daily.