June 9, 2017

Two Springs and Second Opinions

Our lovely, fragrant cherry blossoms (as seen through Prisma) before the winds blew them, and Spring, away.

Spring is my favourite season. It's a time for nature's renewal of life when buds form, flowers bloom and the rains wash away the memory of a bitter winter. It's invigorating. Having spent most of the winter in Victoria (minus one month back in Calgary in February for my brother's beautiful Banff wedding), I got to experience two Springs this year. Victoria's Spring began in February while Calgary's seem to have just come and gone. Double the cherry blossoms, double the tulips, double the enjoyment :). 

I am once again overdue in relaying the status of my health. First of all, I feel great! While snowbirding in Victoria, I got stronger, more energetic and... heavier (thanks to my indulgence of glutenous chocolate raspberry French turnovers;). However, February's scan results did not all reflect how I was feeling. The CT scan was stable (awesome!), but we were surprised and saddened by the radiologist's report on my brain MRI. He noted progression, albeit small. Thinking I would need another Gammaknife treatment, we sent the images to Dr. H (my neurosurgeon in Chicago). We were ecstatic to hear that those lesions were actually pseudo progression, caused by late radiation changes and were inconsequential. I've had two more brain MRIs since then and the same thing happens. Radiologist reports more progression, neurosurgeon reports just more radiation changes. I trust my neurosurgeon, because he actually knows me, rather than a random radiologist who I've never met, does not know my history nor bothered to see how I am feeling (no offence to radiologists). Getting the second opinions from Dr. H has saved me so much grief from being taken off an effective treatment too early, from having to undergo unnecessary and potentially harmful or ineffective treatment(s), not to mention the emotional distress that comes with a change in therapy. Can you imagine how differently this would have turned out for me if we had not asked for a Dr. H's opinion?? ... And THAT is why second opinions matter! 

Other than that fiasco, we are keeping an eye on a couple of things which may or may not have any significance. But I am still, indeed, feeling awesome and, mostly, normal so I'll just keep taking advantage of my good health, my good fortune, and the good life. Summer's heat, long days, festivals, fresh fruits, and social gatherings are just around the corner! Wishing you all a happy, safe and memorable summer! 

January 21, 2017

A New Year

Happy New Year everyone! I hope the holidays and the start of this new year has been good to you.  I have been enjoying my new found life so much that I've neglected my blogging! No apologies. S, Zoey and I are "vacationing" in Victoria, BC. We were here for much of December and returned, after a busy holiday schedule back home, in January for at least another month! While the rest of Canada was freezing, Victoria, although colder than previous years, had much more tolerable weather. Winter has been awesome!

Before I tell you what we've been up to, I should update you on my health. Throughout the ordeal in the hospitals in late summer, as I started then stopped then restarted Tagrisso, I continued to have routine brain MRIs and chest CTs. Tagrisso is working miraculously! My first scans and scans eversince (my most recent being early January) have shown massive  decreases in tumour burden in all parts. There are now only two tiny lesions in my brain and one small nodule in my lungs. My bones have all healed nicely and I feel 100% better! Tagrisso has proven to be very tolerable. I honestly think Tagrisso had very little to do with my hospital stays. Thank you AstraZeneca. Thank you everyone for all your prayers, words of encouragement, and support. I am thoroughly enjoying this renewed life with an abundance of gratitude! 

I thought I could just show you what we've been up to on Vancouver Island. A friend of mine introduced me to a new app called Prisma. It can take mediocre photos and turn them into art! Being artsy myself, thanks to a very talented high school art teacher (thanks Mr. G!), I have been busy collecting "art pieces" to share with you (most of which are from our weekend trip to beautiful Tofino/Ucluelet)! On top of that, we discovered Russell Books in Victoria and I have steadily been devouring novels. There are also great walking trails, parks, restaurants and villages to explore here. Today, we stumbled upon Victoria's Women's March and happily joined in on the rally! I am healthy and happy. I hope you are too:).


Along the Lighthouse Trail, off the Wild Pacific Trail, in Ucluelet.


Lighthouse Trail, Ucluelet


Zoey on Chesterman Beach at sunset, Pacific Rim National Park


Long Beach, Pacific Rim National Park


Little Qualicum Falls, lower falls


Peacocks at Beacon Hill Park, Victoria


November 10, 2016

LCAM 2016

It's Lung Cancer Awareness Month! I know it's not a well known event but I wanted to do my part to remind you that the simplest thing you can do to help is talk about it. Lung cancer has an unshakable stigma. We need to talk about it to change the general public's views of lung cancer and their lack of compassion. I wrote a rant about how invisible lung cancer is and how it's going to be near impossible to change perception of this disease, but there's too much negativity in this world as it is so, despite it being therapeutic for me to write the rant, I omitted it. Happy Lung Cancer Awareness Month! Go for a hike, go for a swim, talk incessantly, use those lungs and appreciate what you have :).

October 28, 2016

Tagrisso, Round 3

Since I last updated you, I spent another week in the hospital, in the cancer ward. Other than nurses waking me up frequently to check my vitals or change my iv treatment/infusion and getting poked daily at 6am by phlebotomists, I had a pleasant stay. I learned to give up on hospital food so S brought in takeout often... I actually put on weight this time!  

While I was in the hospital, my platelets remained low, even went as low as "zero" one day. The hematologist diagnosed me with ITP (idiopathic thrombocytopenic purpura--my immune system was attacking platelets!). They started treatment with IVIG (iv immunoglobulins), which was supposed to overwhelm my immune system enough to shut it down. After two infusions over two days, they realized it wasn't working. Fortunately, even with only "2" platelets (actually 2000 platelets per microliter) my bloody nose finally clotted after almost a week and the hematologist felt it was safe to send me home with a 4 day course of "mega" steroids, again to attempt to suppress my crazy immune system. This was great timing! I was discharged from the hospital the night before a close friend's wedding. I warned her beforehand that I may be psychotic (one expected steroid side effect) but the only side effects I got were high energy, no pain and an insatiable appetite, which was perfect for this special occasion:). The withdrawal symptoms are another story.

It was a perfect, warm autumn day in the Rocky Mountains. We made it just in time (don't ask) for the beautiful outdoor ceremony, where many of my other close friends were also in attendance. This was exactly what I needed. I forgot about only having "2" platelets, among other health issues. All day and night, we laughed, talked and gossiped, and I embarrassed the bride with our stories :). Thank you A & T !!! (and dex). 

Shortly after I began the steroid treatment, my platelet count started to rise. I was allowed to restart Tagrisso (round 3) with careful monitoring. More friends came to visit. And, as soon as it was safe to fly, I went to visit my childhood best friend and her family, who managed to fatten me up some more. This was a much needed escape: quiet, peaceful, carefree and gluttonous :). Love and gratitude to my Manitoba family! And all of my wonderful friends! 

As soon as I arrived back home, I enjoyed a week long celebration of my milestone birthday.  Zoey came back to us, in time for my birthday! Tagrisso is still working its magic (albeit at a lower dose) and the platelets are currently in a safe zone, although weekly monitoring continues. I feel "normal" again, socializing, cooking and cleaning, and talking about mundane everyday things. Life is good :).
 

September 19, 2016

Here We Go Again...

I am blogging from a hospital bed again. For a different reason. Before I tell you about this week's ordeal, a huge thank you to everyone for your prayers, positive thoughts, healing energy, etc. Please keep them coming! 

After my first week back on Tagrisso, I anxiously got blood tests to see how my liver was doing. The good news was that almost all of the liver enzymes were within normal limits or close, and the tumour markers continue to decline...Yay! Unfortunately, my neutrophils, hemoglobin and, especially, platelets were dropping to dangerous territory. The platelet drop was concerning enough that a repeat CBC was needed to make sure it wasn't going to lead to serious complications. Two days later, my oncologist called to tell us that my platelets had now dropped to 5!!! The normal range for platelets is 150-400! In fact, I had been dealing with a bloody nose for about 7h by then. I was taken off Tagrisso again :( and I was to go straight to the ER for a platelet transfusion since a risk for internal and/or cerebral hemorrhaging was high. How do I keep getting into these dangerous situations? In the ER, I got 2 doses (bags) of platelets and a rhino rocket (i.e. nose plug). A huge thank you to the 10 donors for your platelets. Yes, it takes 5 people to make one dose of platelets. Please consider donating blood if you can as there is a huge shortage. In fact, we waited an extra 3h for my second bag because it had to be sourced from another hospital.  I was sent home but I was asked to return Sunday to remove the rhino rocket. 

Sunday evening, we returned to the hospital to get the rocket removed. Unfortunately, my nose continued to bleed so another CBC was done. Now, my platelets were 4 (from 37 after the transfusion!) after only 2 days, but my hemoglobin and neutrophils had improved. The ER doc was perplexed as to what was going on. After consulting with on-call oncology, another 2 bags of platelets were transfused. Another CBC was done. This time, the platelet count only improved to 11 (it should have been closer to 40). Something is eating up my platelets!!! A hematologist was consulted and 2 more bags of platelets were transfused. That's 6 bags now total, or 30 people I owe my life to. Thank you so much for donating your blood!!!

And now we wait. My oncologist and a hematologist have been consulted. I will eventually be transferred and admitted to the hospital connected to my cancer centre for better care. In the meantime, more tests are being done to try to find out what is destroying my platelets so rapidly. 

Word of advice to other EGFR+ lung cancer patients: DO NOT try nivolumab unless it's absolutely necessary. I truly believe it messed up my immune system and causing my body to attack itself. I have also read over and over that it's ineffective for EGFR+ people. Please be careful with immunotherapy.

I wish I had better news to share but it looks like more challenges have come my way. What doesn't kill you can only make you stronger, right? Let's hope it makes me stronger... And that the food and sleeping at the other hospital is better. I would also like to get off this ridiculous roller coaster ride... 

September 4, 2016

Home Sweet Home

I was discharged from the hospital on Sept 2nd and have been recovering at home. No more serious diarrhea (ever since they stopped the iv antibiotics!). Blood counts were slowly improving. Liver enzymes continued to decline. Unfortunately, I lost even more weight but my appetite improved so slowly putting back on those pounds and rebuilding my stamina. We nervously waited to meet with my oncologist to see if I could restart Tagrisso. We met with Dr. B on Sept 6th and found out that my liver enzymes had almost normalized but my neutrophils, although a smidge better, was still low. The most striking finding was my tumour markers. It had fallen from over 300 (yikes) to 37!!! That's almost a ten fold decrease while being on Tagrisso only two weeks then off for over a week! Wow!!! And after a short discussion with Dr. B, I was allowed to restart Tagrisso that night!... With caution. We still need to be careful about its effects on my liver so weekly blood tests are needed and we see Dr. B again in 2 weeks. 

Eversince I restarted Tagrisso, I've been sending healing light and happy thoughts to my liver :), I restarted iv vitamin C, and after consulting Dr. Block, who was just as amazed by the fall in tumour markers, adjusted my supplements to protect my liver. In short, I am doing everything I can to stay on this wonder drug. Please continue to send prayers, healing energy, positive thoughts, happiness, sunshine, rainbows, etc. this way. Thank you!!! Also, a big thank you to our friends and my little brother for bringing in food, books and your company while I was in hospital. Another huge thank to our neighbours and friend who took/are taking care of Zoey while I recover.  So grateful to be surrounded by such wonderful people :). 

August 28, 2016

Ups and Downs, Tagrisso and ER Visits

It's been a roller coaster ride the past couple of months. The past few days have been challenging to say the least. In fact, I am blogging from a hospital bed... 

So in July, we were ecstatic to find out from Foundation One that I, indeed, have the T790M mutation, which can be treated with an oral targeted drug (Tagrisso/osimertinib), which Health Canada just approved in July.  But despite that knowledge, we had to wait to see how effective immunotherapy (with nivolumab) was for me. Frankly, nivolumab made my life miserable. Side effects were increasingly intolerable: debilitating bone and muscle pain, complete lack of appetite, fatigue, weakness. I became less active, less social, lost a significant amount of weight, my mind frequently went to dark places. Regardless of how I responded to nivolumab, I was ready to quit the treatment because it was deteriorating my quality of life. While waiting for the immunotherapy verdict, a brain MRI was done one month after my Gammaknife procedure. It showed reduced sizes of all treated brain lesions and nothing new. For awhile there, there was light at the end of the tunnel... HOPE. 

However, a second brain MRI and, bone and CT scan was done in early August. Sadly, nivolumab did not work for me... at all:(. There were new lesions and old lesions were growing, both in my lungs and spine. This month's brain MRI revealed regression and growth of old brain lesions and new "innumerable" spots were seen throughout. We were, once again, devastated. To have dealt with so much pain, only to find out that it was all a waste of time.

Immediately after we got the bad news from the CT and MRI reports, my wonderful husband arranged, through Astra Zeneca, access to Tagrisso. I took my first Tagrisso pill 3 days after. My symptoms began to improve immediately :).  I also opted for a second  palliative radiation treatment to my spine, which also helped. Because of nivolumab's long half-life, however, I was now dealing with side effects from all three: nivo, Tagrisso and radiation. Tagrisso's side effects are similar to Iressa: dry skin, rash, diarrhea. Radiation to my spine, I was warned, would temporarily affect my bone marrow function which meant that my WBC, RBC and platelets were going to decrease... Which was already a problem. At the time, I was happy just to get immediate pain relief so it didn't occur to me that side effects could get serious...

Treatments aside, more family came to visit in July and August. A huge thank you to my sisters and brother for all of your help! In early August, a wonderful friend of ours participated in the Ride to Conquer Cancer, benefiting the Alberta Cancer Foundation, in my honour! I was so touched. Last I checked, he managed to fundraise close to $5000!!! Way to go ST!!! Thank you to everyone who helped him surpass his fundraising goal! Much love and gratitude to my awesome friends and family for all that you do for me/us. 

A little over a week ago, I began having fevers. After a few days, we decided to get it checked out so off to the ER we went. This was when we found out that after only 2 weeks, Tagrisso was working! The nodules in my lungs were shrinking!!! Fortunately, they also ruled out pneumonitis and interstitial lung disease (potentially fatal conditions). But blood tests revealed my immune system was severely compromised. WBC and neutrophils, as well as my platelets and hemoglobin had all plummeted (likely a combination of Tagrisso and bone marrow suppression from radiation). Nothing else was found so cultures were taken and I was allowed to go home with a warning to return should things worsen. The next day, I developed severe, watery diarrhea (not like Tagrisso diarrhea). Dehydration and weakness set in so off to the ER again we went. This time, it was more serious. My blood counts had not improved. My liver enzymes were through the roof! At one point, one blood test was so concerning, the internist mentioned "liver failure". Panic set in. Tears flowed. Fortunately, Dr. L (the internist) decided to repeat the test and found it to be an error. WTF!!! Way to scare the hell out of us! Either way, I was admitted to the hospital since my liver was still compromised (just not in immediate danger of failing!), and the diarrhea and fever were not improving. 

I have now been in hospital for three days and I'm running out of blood to give! Despite a multitude of tests, they still cannot clearly pinpoint a cause. Sadly, I have been temporarily taken off Tagrisso as it has been known to affect the liver. They started me on iv antibiotics, which stopped the fevers. Yay! But after 2 days, my liver enzymes had only slightly improved and the diarrhea is no better. I continue to struggle with my appetite and weight (I lost almost 10lbs while on nivolumab! The diarrhea is not helping). Extreme fatigue is a constant struggle. On the upside, I have my own room (in isolation because of compromised immune system) with a nice view. The hospital is situated beside our city reservoir with lovely walking paths. And the nurses, physicians and support staff here are all super friendly. This is where I need to be right now as I wait to recover and find out what the @%$& is going on. 

Please send any prayers, healing energy, and positive thoughts my way so that I can make a quick recovery and get back on life-saving Tagrisso ASAP. Much love and gratitude to you all! 







June 6, 2016

Recovery and Biopsy

We have been back in Calgary since May 21st. I have been meaning to write an update sooner but, I think, one of the targeted radiation side effects is writer's block... Or it could be the extreme fatigue and endless appointments. I came back in time for my next immunotherapy treatment. With the Gammaknife treatment, medications, and immunotherapy, the side effects are abundant: fatigue, sleepiness, insomnia, hair loss (good thing I have lots of hair), increased appetite followed by lack of appetite, moodiness, bone and muscle pain, etc. It has certainly slowed me down but I do hope to get back to my activities soon.

One week after our return from Chicago, my mom and aunt visited to pamper us. It was fantastic having them here:). We will be chore-free for quite some time. Our freezer is stocked with yummy food. The garden is set up for summer blossoms. Where do they find the energy? We were so grateful for their visit and were really sad to see them go. Thanks mom and aunt K! Love you so much! 

On the latest health news, recent CT chest and abdomen scans showed mild growth in the lung tumours and a few new bone lesions on my spine. My oncologist is not yet ready to give up on immunotherapy so we proceed for a few more rounds. In the meantime, we met with a new radiation oncologist, upon our request, who is open to reconsidering SRS treatment of my largest lung tumour, any bone lesions causing pain, and monitoring (possibly retreating if I am eligible) the Gammaknife effects on my brain lesions. We appreciated his open-mindedness and progressive thinking; a huge improvement from the depressing and negative Dr. S. 

And, yesterday morning, I got the call to prepare for another lung biopsy. We have been asking Dr. B (my medical oncologist) about retesting for mutations to see if any new targeted-therapy drugs would benefit me. I was at the hospital for 6 hours today, June 15th. This being my third lung biopsy in 3 years, I knew what to expect. The worst part was coughing up blood as the tissue samples were being taken. That was a new experience. And, not gonna lie, it scared me. It is a normal occurrence during and after a lung biopsy so I had no reason to worry. It didn't help that I was exhausted. So now, we are currently arranging to get a sample of this newly biopsied tissue sent to Foundation One, an American company that tests for over 300+ mutations. Fingers are crossed that they find mutations that have available, proven effective treatments! 

We appreciate all the positive thoughts, prayers, healing energy and good vibes being sent my way. I'm sorry if I haven't replied personally to your emails, calls or texts. We are grateful for all your support. Thank you!!! So let's all hope that Foundation One has some good news for me in the weeks to come. I would also love a break from all these appointments, side effects, procedures and treatments. Frankly, it's all taking a toll on me...