LilyMir

The home phone suddenly rings startling me and causing quite a bit of alarm; we never use our land line, I don’t even remember our home phone number! My husband answers and the caller asks for me. I nervously pick up the almost archaic wired phone intrigued. Hi, the caller says, this is Astra Zeneca! My heart races and I ask, how can I help? The nice agent tells me that my Canadian province does not cover my (already approved!) targeted adjuvant therapy so far and thus I have to apply for their company’s compassionate use program. They want to see see if I am eligible. My heart, already racing from all the shocks of surgery and adjuvant chemo sessions, races even faster. I ask with a nervous laugh, how much is it? She says about $10K/month. Ten thousand dollars. Per month. For a pill-a-day that can save your life. My hands start shaking a bit, this flimsy stupid coil phone handle is so hard to use. The agent asks me if I have insurance. Luckily I do, through my work but I am not sure they cover this, so she gets busy taking all my info to chase up my insurance. My scientist brain immediately starts to think. Huh, even if insurances pays, if Tagrisso is actually good, and I live long, soon enough I will have to start worrying about my life maximum coverage. I tell my brain to settle down, that if I do live long, that this would be a good bridge to cross. Let me see if I survive first. That night I could not sleep. I kept thinking of all those in the world who are told they cannot get their life-saving drug, or that they have to pay a horrendously large amount to stay healthy. I recoiled in horror as I remembered how my kid’s school is now refusing our request for him to remain masked in school. We want to protect him (as we did for almost 3 years now) from a terrible virus that killed many of our family members, that could cause him much short and long term harms, and that has the potential to cause his mommy who is formally designated Clinically Extremely Vulnerable untold harms, not only through infection, but also disruption of active treatment and more. The school thinks the pandemic is over and that it is time to get going with "normal life". To them and many in our increasingly ableist society, the school is telling my kid that his mommy is now expendable (to be clear, we never asked anyone to mask, just that we be given our own right to do so, and the administrators know all about my lung cancer situation). As the night went and my insomnia lingered, I recoiled even more remembering the news of the night before. A shameful milestone for Canada. Euthanasia is now the 6th cause of death in my country. SIXTH. There are Canadians who were approved for euthanasia for having hearing loss. Literally, hearing loss was the only listed reason for one poor soul that was put down! I weep in disbelief how of little value human life has become, and how now, as a lung cancer survivor, I am part of the underclass, the immuno-suppressed, the vulnerable, those who are told to watch out for themselves, to stay at home, to consider that life is not worth living. I wish the world was a better place. P.S. I have yet to get confirmation of my drug coverage. It sounds the chances are high I will get the drug either through my insurance or from Astra Zeneca as they encourage our government to publicly cover the drug.

So sorry to hear you had to go through so much adversity! However, your record demonstrates that you are a strong and capable survivor! Please do not lose hope and keep focussed on resuming life, there is so much hope these days and new effective treatments and trials to pursue, even with advanced lung cancer. We are rooting for you and so many great people here read messages and give good advice whenever they can. Keep in touch on this amazing forum, it helps so many of us when depression or despair takes over.

Hi Samantha, we share quite a bit. I am a mom of a 6 year old kid. I suddenly was diagnosed with stage 3b lung cancer in Mar 2022. I live in Vancouver too! It has been a roller coaster of emotions from shear rage (radiology missed my cancer that was visible on an incidental scan back in 2018, which probably was stage 0 or 1), to terrifying fear and nightly sobs, to deep sadness, to a more calm melancholy mixed with hope. I still have my bad and better days, not sure I have good days yet, it is all still too raw and very scary. I share all my emotions with my husband and mother, and a couple of close friends. Most people I know or work with do not care much so I focus on the very few who matter and care. Stay in touch with the wonderful people on this forum, they are amazing. I tried a councillor at BC Cancer and it was a terrible experience. I don't think I can benefit from advice from anyone who does not know and have experienced what I am going through. It is a very tough journey but as the others already told you, there is so much more hope these days with many new treatments. I don't know your specific diagnosis and treatment plan but if you have specific questions just ask. BC Cancer has all the treatments available anywhere in the world, though service leaves much to be desired sometimes. The important thing is that you get treated ASAP so educate yourself about your diagnosis, advocate strongly for yourself and ask a lot of questions until you are satisfied with the answers you get! Stay hopeful! Welcome and good luck!

I developed a pesky cough after my lobectomy, it came about while recovering at home, was not present during my week's stay in hospital. It lasted a good number of weeks and was often triggered when I talked. It still comes and goes sometimes while on chemo but much milder and shorter duration. My surgeon and oncologist were not too concerned. I however did check in with my respirologist and he had me do two X-rays, 2 weeks apart since the cough persisted. Things look OK but it still rattles me a bit when I get a coughing bout but feel reassured in that it is reducing in frequency and intensity. I check my O2 often too and it seems fine. Will see what my followup CT shows in some weeks.

Did you ask her doctor this question Kelvin? Maybe take some online resources of what worries you ( immuno supposedly being bad for EGFR) and ask for an explanation? I have no clue. I am EGFR but they will put me on Tagrisso for 3 years after adjuvant chemo. No one mentioned immuno. However, I had resection surgery so different than your mom’s situation. Second opinion is always good.

Hydralyte, there are a number of flavors.

Is your mom well hydrated Kelvin? During my chemo cycle 1 I almost passed out and my pulse and pressure was low. Electrolytes help too, I use some in form of powder or tablets with very little sugar added, as the commercial "sport" ones are quite unhealthy. Hope your mom feels better soon but let the doctor know (or call the nurse line for advice).

Hi there, so sorry to hear you are joining our club but happy you found this great forum. I was recently diagnosed with NSCLC stage 3b on an incidental scan. I underwent ULL resection with clean margins in April but a medial node was positive so I am now on adjuvant chemo for 4 cycles. I have EGFR mutation and they want to put me on adjuvant targeted therapy to reduce risk of recurrence since it was shown to be quite effective in trials and recently approved for clinical use. I believe some here have your ALK mutation and can better comment on the related targeted therapy. I am a "healthy" 49 year old with a small boy so this was the shock of my life. The wonderful people here helped me a lot and I am sure they will help you. There is lots of hope with new therapies approved over the past 5 years and many in this forum here have been NED (no evidence of disease) for long periods after treatment so there is lots of space for hope. I still struggle with the shock at times, and the harshness of treatment, but learning to live one day at a time since uncertainty is the worst and there is no solution for that but trying to be positive (or as our Tom puts it: "sanguine"). Good luck with your treatment!

Hi Chris, how have you been? Hope your surgery went well!

Interesting. At my cancer centre, they give me Dexa day 1 along with a very good nausea med, Dexa again days 2 and 3 (and now day 4 and 5 due to my very bad pain in cycle 1 but maybe I won't need it). I was told Dexa helps with inflammation, nausea, and now read it helps with allergies too. I was never given Benadryl and hope won't get a reaction next time (they mentioned it can happen the second dose of Carboplatin).

Hi Walfredo, I had VATS lobectomy in April. My surgeon was top notch and very famous but he also alerted me that they may have to open if anything unexpected happens but that it was rare in his hands (nothing did). Surgeons are like artists, very different than oncologists, who follow protocols. A surgeon works according to their skills and preferences, some find RATS better since it helps them be steady. Others are super skilled, they feel they don't need a robot and may find it restrictive. I chose my surgeon by reputation and meeting him confirmed not only his competence but his sheer niceness and unparalleled bedside manners. How I wish my oncologists were a fraction of his humility and humanity. If it is cancer, I second Tom's suggestion to follow surgery with chemo. Also push for mutation testing to see if your cancer is targetable. Best of luck!

I would seek a second opinion at the best cancer centre you can access ASAP. I do not mean to cause alarm but 3.2 cm is a very large nodule and that it is avid on PET is very concerning (how much?). I was unfortunate to have what they told me is a 2.7 cm nodule and they removed the entire lobe. It was adenocarcinoma, I am 49, female, never smoker, and this nodule turned out to have been there at least since 4 years ago, missed by radiology on another incidental scan, when it was much smaller and was left very slowly growing until it reached a mediastinal lymph node too, suddenly placing me stage 3b instead of 1 or 2 (all this was only discovered with pathology as imaging showed much smaller spread). For lung cancer, when caught early, surgery can be curative but you need a top notch surgeon. If not resectable, they have good treatments too. Your question about accessing for biopsy by needle is a good one. If you are not getting good answers, find better doctors. "We don't know what it is" is not a good answer. I have never heard of doctors waiting to see what a 3cm+ lung nodule will turn to be but maybe other here have other experiences. Advocate for yourself strongly. I learned this the hard way. Take care please!

Hi Judy, they give you Benadryl each infusion without any previous allergy incident? I never saw that at our cancer centre.

I think every medication has side effects so anti allergy drugs are not routinely given but I am surprised the doctor panicked! They should be prepared for such possible reactions in every case. Maybe it was a novice nurse, not an oncologist? I had my infusion this morning (amazing nurse). So far so good but during the last cycle trouble started a bit later so I am holding my fingers crossed. At least my blood CBC tests were back normal today so a little good thing to celebrate.

I asked at BCCA today Kelvin and seems allergy occasionally happens and seems to be not a big deal. They said at times it occurs during a second session, rarely a first. They give allergy meds and proceed.

Is your mom seeing a lung oncologist Kelvin? Maybe your mom also has high PDL1 too and immunotherapy is possible for her? Check out the protocols online at BCCA, they specify what they use for different stages. Ask lots of questions. Dana Farber has remote second opinion for oncology, but not radiation as I recall, but you can double check. MSK has second opinions online too. Both are $2-3K if I recall right so not cheap but not horrific.

I am so sorry to hear Kelvin! Hope they managed it without too much trouble for your mom. Did the nurses/doctors explain why this happened? My second cycle is this Wed and I am so stressed. I am still struggling from the effects of the first cycle and oncologist delayed the second cycle from last week (will check my blood tomorrow). I had almost every side effect in the book after the first cycle and they changed the regimen for the second. It is such a rough road for some of us!

Hi Cheryl, originally my lung nodule looked like stage 1 or 2 on CT and PET, but after lobectomy the tumour turned out to be elongated with 5.8cm in one dimension and one mediastinal lymph node was positive hence I was stage 3. I was quoted 70% risk of recurrence despite clean margins. Despite me having an EGFR mutation that has targeted therapy with (very recent) results of 80% recurrence reduction, they also recommended chemo first since this is standard of care and can be 15% reduction of risk. I just had the one chemo session so cannot comment much how hard it is, but so far it has not been fun for sure. I however think the recurrence risk is too high, and can be deadly, so I am taking the risk of chemo for now. Will see how things go session by session. Tough decisions, I know.

It won’t be nearly as bad as you think Chris, focus on the fact that the surgeon will remove any nasty cancer, which is potentially curative! Staying in hospital means you have the best care at a click of a button so enjoy it! I too am dreading my first chemo session today so you are not alone having fears. I will be thinking of you.

Hi Chris, good luck tomorrow! I don't know anything about exparel block either, sorry. I stayed in hospital for a week as I had a (minor) air leak and my doctor was awesome and thorough (the nurses wanted to discharge me after 2 days and remove the tube but he did not let them). Throughout my stay I was on strong narcotics to control pain, which varies from person to person. I was given max doses in the beginning which were gradually reduced to 0 on discharge (along with anti-nausea meds, which I really needed). They also had me on an epidural for the first 3-4 days with gradually reduced level. If pain became strong they at times gave me IV breakthrough narcotic which almost instantaneously helped until the pills kicked in (it takes like an hour for pills to work). At home, I took Tramadol for a week or so then weaned myself to Tylenol and/or Advil then nothing. Moving as soon as you can helps, as well as coughing and using the spirometer. Wishing you the best!

Hope your mom is feeling well. It depends on the chemo drug Kelvin. It is distressing but remember that it is temporary and the hair grows back. Focus on the fact that the chemo is killing the cancer. Maybe buy your mom a couple of nice scarfs or hats if she likes? It can be rather stylish to wear them.

The protocol is online at BCCA website, seems it is used for combo therapy (chemo and radiation). Targeted therapy likely comes after that anyways (?) is applicable but make sure you do ask and get answers about her molecular testing results. You should get a copy of all results.

Glad to hear you mom has her treatment plan finalized. Did she have the EGFR mutation after all? I think those drugs are used for many kinds of cancers and are not specific to one if I am not mistaken. Best of luck!

As I read, young age is associated with improved survival in a general sense in NSCLC. Younger people, women, non smokers tend to have a mutation, often EGFR. Treatments however are much better now, for any lung cancer, than they ever were so all kind of patients have hope. A key issue is to catch any cancer as early as possible. Don’t jump the gun and let your fears take over. It is very rare for someone to get lung cancer in their twenties but it happens. The best is to put your worries to rest by getting properly checked. That way you can move on with your life. Hope you get a clean bill of health.

I don't know if there is an answer to your question but anecdotally, I had a tumour in one lung for over 4 years (at least) and had no symptoms until last year. Even then symptoms were so vague, occasional and minor (nasal drip, cough, fatigue, back discomfort, chest discomfort). How I know the tumour was there for a long while is that after my incidental diagnosis this year, radiology revisited a scan I had in 2018 and the tumour was already there, at 1.5 cm already (less than half what it was this year though, sadly). So in my case, I had a large tumor that seemed to have grown slowly over years with minimal symptoms. Doctors ignored my symptoms and chalked it on hormone fluctuations, anxiety, allergies etc. This resulted in me having progression to stage 3, a lobectomy and needing long term adjuvant therapy since the cancer spread to one lymph node and grew quite a bit. Health anxiety is a terrible thing. Do not be afraid to get properly checked up and do not let doctors ignore your symptoms. Catching any lung cancer early is the best thing one can do since cure chances are high in early stages, and deteriorate with time. Hopefully you have nothing to worry about.