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 :).

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 :).

 

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... 

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 :). 

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! 

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...

Post-Gammaknife

My "brain surgery" went well! I am now at the hotel recovering. The whole procedure took 24h (10am Monday arrival to 10am Tuesday discharge), from scans to treatment planning, patient preparation and a 12h (all nighter!) Gammaknife procedure. Gammaknife is a specific type of targeted radiation (SRS) so it is minimally invasive. I came off the table with two large bandaids on my forehead, where the head gear was screwed into my skull (no it didn't hurt much, the area was numbed beforehand).

I was released Tuesday morning with post-op instructions. Dr. H and Alice (his super nice nurse/assistant), took great care of me. I am sleep-deprived (they had to wake me up to reposition my head gear for every brain lesion that needed zapping, that's every 20 minutes! Dr. H said he got all 18 of them :). Incredible. We are so grateful!!!

Now onto recovery. I've been put on steroids to reduce brain swelling but one of its many side effects is an insatiable appetite. I need to regain some weight anyway;). I've decided to throw out my restrictive diet (sorry, Dr. Block) and eat whatever I'm craving... Oddly enough, right now, it's watermelon, corn and pasta... With meat!!! Poor S is trying to keep up with the food demands. He's the best caregiver anyone could ever ask for :). 

From here on, we hope for a full recovery from Gammaknife surgery (it will take a month or so to see results) and we hope that nivolumab will do what it's supposed to do... 

Thank you to everyone for all your messages of support and prayers! 

Quick Update!

A lot has happened since I last wrote. You'll need to sit down for this update. I'll keep it short but the news isn't sweet. Plus, I'm about to head into surgery...

I was told 3 terrible things on March 22 by the radiation oncologist. We weren't really prepared for any of it.
1. I was not a candidate for radiosurgery to the one sizeable nodule growing in my left lung, in light of some new findings :(.
2. The cancer has spread to my bones (several areas of my spine, pelvis and left femur) :(.
3. Most devastatingly, the cancer has also spread to my brain (numerous tiny intracranial lesions) :( :(.

Shock. Disbelief. Devastation. Tears. I cried. We cried. We certainly never expected the few symptoms that I had (more headaches, knee and back pain), would amount to THIS. I felt like I was given my cancer diagnosis all over again. It was all new territory (bone and brain). What we don't know drives the fear within us...

And here's what happened since then:

1. We decided that we don't like my new radiation oncologist, who told me because of the number of brain lesions, my only option was whole brain radiation, which was going to "detrimentally decrease your quality of life". 

2. We consulted Dr. Block (in Illinois) who was glad I didn't jump into whole brain radiation treatment because of its longterm side effects. He referred us to a neurosurgeon who has treated countless brain lesions on countless patients with Gammaknife successfully with few side effects.

3. We got in touch with the neurosurgeon (also in the Chicago area), who is open-minded, positive and friendly. He said Gammaknife would be an option for me when we were ready. 

4. We all agreed (my medical oncologist, Dr. Block, the neurosurgeon, and even the radiation oncologist) that the brain lesions were small enough that I could proceed with immunotherapy and rescan the brain shortly after to determine the next course of action.

5. I started immunotherapy with nivolumab on April 1st (4 infusions now completed). I also restarted Iressa (gefitinib) at the same time, with support from my medical oncologist, even though it's not standard of care. I figured Gefitinib would be a good (not great because of past resistance) back up while waiting for nivolumab to "kick in". Iressa is also no longer covered by the province since it is only a "first line" drug so we have been trying to source a supply.  

6. Six weeks after my March brain MRI, I underwent another to see the response or lack of to Iressa and/or nivolumab. Neither of them seem to have crossed the blood brain barrier in the 6 weeks since I've  started this new treatment :(. The brain lesions have grown in size and number. We were very disappointed... And scared :(. 

Within a few days of the news of the brain lesions progressing, my appointment to have Gammaknife surgery was booked. Flights, accommodation and car rental was booked shortly after. 

It's May 16th, and here we are waiting for Dr. H (neurosurgeon) to finalize the Gammaknife treatment program. I am drugged up and set up (headgear) for the procedure... 

Thank you to all my friends and family who have helped us prepare for this trip, for your words of support, your prayers and positive thoughts. My intuition tells me this is the best treatment option for me right now so we are glad we could arrange this trip so quickly. But this my brain being treated and it's scary, because it's going to get zapped in multiple places and there are potential side effects to consider. Please keep sending prayers, healing vibes, positive thoughts, etc our way:). Much love and gratitude to you all. 

Travel and Transition

A very very very belated Happy Holidays and Happy New Year everyone! I hope 2016 is off to a great start for you all. I can't believe it's already March!!! Time really does fly when you're having fun... or sleeping. My apologies to those who follow my blog for my long absence. I'm still alive and kickin'! Two main things have kept me busy the past few months: traveling and preparing for my next line of therapy...

TRAVEL

Since my last blog post, S and I have spent quite a bit of time on airplanes.... Yes, more travels! In late November into December, we visited Tokyo, Singapore and Bali. Traveling overseas always makes me forget about life's little woes because, as I realized, senses get overloaded by new experiences (especially in Tokyo). There was no room to notice chemo side effects ... except when I ran that high fever on our 11h flight to Japan (3 days after chemo!). At least it helped me sleep. In a nutshell, Tokyo/Japan was unlike any other country we've been, and as our friend commented after her trip there... It may have ruined all other future countries for us. It was clean, organized, friendly, and delicious! We only had 3 days there but already can't wait to go back to explore the rest of country. We had even less time in Singapore, which was our "layover" country. Overnight was not enough time there but a big thank you to M&R (S's cousins) for their hospitality, for taking us out for yummy seafood laksa (at 328 Katong Laksa), and for getting their Uber driver to take us to the airport. Finally, Bali was not exactly how I pictured it but a cultural and spiritual experience nonetheless. I guess I expected the entire island to be an ideal place to meditate... Ha! The touristy areas (Kuta and Seminyak) were polluted and crowded even in low season. We spent most of our week at Seminyak Beach, battling the waves and sipping drinks :). Ubud (in the centre of Bali) was better suited to our preferences but my lungs didn't appreciate walking the hills. My stomach, however, did appreciate the daily coconuts and the yummy vegetarian food, especially at The Elephant and Earth Cafe :). After a week in Ubud, we missed the beach and spent our last two nights in Nusa Dua at a resort. Some of our favourite pictures from this East Asian trip are below.  If I wasn't a week overdue for my next chemo treatment, we would have stayed longer overseas. Life is always better when you are on tropical vacation... Sigh. 

So we were back in frigid Calgary for a week in December, just enough time for me to have chemo #10 and recover from the chemo side effects, before we jumped on yet another flight for southern Ontario for the holidays. Thanks to mom, my sisters, my aunt, and S's 40th birthday feast, I managed to gain a few pounds while mostly sticking to my diet :). When we finally returned home to stay, needless to say, we were exhausted. But chemo#11 came and went quickly and added to my ever increasing fatigue. I feel like I slept most of January away. 

By February, the west coast was calling me (especially since there was a seat sale!) so off we went to visit our wonderful friends in Victoria. Victoria, not surprisingly, was already experiencing their springtime blooms in Mid-Feb! We love being near the ocean, the warm and humid weather, and the organic, relaxed lifestyle. Makes me want to move there... Sigh. 

At the entrance to Meiji Shrine grounds in Harajuku, Tokyo

Freshly made sushi for breakfast at Tsujiki Fish Market... yum yum!!

Seafood laksa in Singapore... delicious!

Tanah Lot (Temple by the Sea) in Bali

Beautiful sunset at Seminyak Beach

My view from the lounger on the beach in Nusa Dua

Gorgeous crocuses in Victoria's neighbourhoods in February!

TRANSITION 

It's time for a health update! I had a CT scan in February. It was long overdue thanks to our vacation and the holidays, but there didn't seem to be any urgency since I had no concerns and my blood work was relatively good...  That is, until my tumour markers started to rise in late January. Despite still feeling well, the scan revealed growth in one nodule but improvement or stability elsewhere. The radiation I had to my upper left lung almost a year ago has resulted in scarring, which may be why my shoulder pain hasn't returned but the shortness of breath continues to persist, maybe even worsen?  I continued with two more chemo cycles (that's 14 chemo treatments in total) since that discovery while my oncologist arranged for my 3rd line treatment. In the meantime, new symptoms have arisen: knee and back pain, swollen fingers and toes, and increased frequency of headaches. None of these are debilitating but the achey knees do slow me down on bad days... damn stairs. Dr. B thinks that some of these symptoms could be due to longterm treatment with Alimta (swollen fingers, joint pain) but after our last discussion, he signed me up for a gazillion appointments and, upon my request, started me on Celebrex (shown to improve chemo efficiency and targets the apoptotic pathway in cancer cells, in addition to treating arthritis. Bonus!). SO... this week, I've had pulmonary function tests, consulted a pulmonologist (who informed me that my left lung is "getting smaller" and that I now have about 70% of a normal person's lung volume... explains a lot), got a full body bone scan and will be getting a brain MRI later today. You're probably wondering what my 3rd line treatment is?  Next week, I have an appointment to see a radiation oncologist specializing in stereotactic radiosurgery!! I'm kind of excited about that because I've heard good things about SRS.  Hopefully, I'm a candidate. But that's not the official 3rd line therapy. Dr. B applied me for immunotherapy with NIVOLUMAB.  I signed up officially with the pharmaceutical company (BMS) a few days ago.  As they tell me, as soon as the paperwork is processed at my cancer centre, they'll arrange my first infusion.  With so much hype about how well immunotherapy is working for certain cancers, including lung, I can't help but be optimistic... but always with a bit of caution. Fingers crossed.

In all honesty, I'm feeling pretty darn good and keeping happily active, especially now that my knees are better (thanks Celebrex!).  My oncologist has a great plan laid out for me.  I've learned not to stress over scans; why worry when you can't change it?  I'll just take it as comes...