LilyMir

29 years old is very very young for lung cancer indeed, what rotten luck. However, younger patients usually fare better so try to focus on that, and the fact that many new medications are in the works. I know well about fearing for your kids growing up without their mom, and watching them witness her very tough cancer journey. What most terrifies me about my lung cancer are the thoughts of me not making it and my kid grieving much for me. Nasty thoughts that make me almost lose it sometimes but I always crawl back from those dark thoughts and focus on hope. We won't know the future until it comes so trying to make the best of that we have now is the only possible way to actually live with cancer. Let us know if you or your wife have questions to just want to vent.

Hi, from what I gathered during my diagnosis process, spiculated is bad news most of the time if the lesion is large. If the lesion is small, there is still a fair chance it is benign. I know how hard it is to wait for answers but try to remain hopeful it is not cancer, but if it is, you would have caught it rather early, which is usually very good news. Under 5mm is small. Mine was up to 2.5 cm in one dimension when radiology spotted it (was much smaller but missed on a scan years earlier!). I remember using an online risk calculator when I was waiting for answers but I recommend you don't as it won't really give you an answer, only biopsy will. Best of luck!

Hi, I am a mom of a 6 year old so I get your family's anguish (also EGFR exon-19 and on Tagrisso). Do not hesitate to reach out to this forum with any question or just to vent. So sorry you received such diagnosis during a most joyous and difficult part of life, how unfair life can be but your wife is here and kicking so celebrate that! Welcome to this awesome support group!

Hi May and welcome to the club no one wants to join! I was incidentally diagnosed last year at 49, NSCLC EGFR mutation. I am a mom of a first grader. It was the shock of my life. One 5 cm tumor but staged 3b as one mediastinal node was positive. Had lobectomy with negative margins then adjuvant chemo then adjuvant targeted therapy now. What a tough year it has been but I am here with my boy and husband and to date scan renain NED. Hope for many years of same.

You would love Roman pizza then. Wonderful selection of delicious but not overwhelming toppings including lots of veg. My favourite veg pizza is potato (a classic in Rome). Just thinly slice potatoes, rosmary, coarse salt and olive oil (white pizza). I won't tell you about curry and banana pizzas that are so popular in some parts of the world 😅

I am so very sorry to hear this. Life is so fragile isn't it. Wishing you the strength to get over this terrible loss. Hope you have other family/friends who can support you as you grieve.

Hi Michael, sorry to hear you have brain fog symptoms but glad they caught your cancer early. What kind of scans did you have last? Did they include contrast brain MRI? That would be the gold standard imaging to check for brain issues.

Hawaiian pizza and BBQ chicken (bracing for attack ;) Classic! Tastes amazing with a heap of basil on top.

I am so sorry to hear you have this tough diagnosis but glad to see you on this forum, it is the best out there for lung cancer patients as well as their caregivers. I understand what you say about not being afraid of death rather being afraid of the pain and suffering death would cause one's family. I am a mom of a first grader and the idea of him being orphaned makes so me deeply sad and terrified. But we have to keep hopeful and fight, no one knows what the future holds. Some stage 1 patients do not make it while some stage 4 patients live for years, even decades. The extreme uncertainty is brutal, and it take a long while to accept life with it. Give it a few weeks, or even months, and you and your wife will adjust to your new life. It is important to focus on living the moment as much as possible (while still acknowledging the persistent grief this diagnosis causes). I found it helped me a lot to think of practical matters, like wills, directives and the like so I could at least remove the things I can control from my pile of worries. It is very tough still but much better than when first diagnosed. Try to stay positive and maybe your wife would benefit from talking to a councillor if she is severely affected by the situation. Good luck!

Sad to hear about the failed robotic biopsy. I prioritize a competent surgeon widely known for their skills over the use of robotic surgery. Make sure your surgeon is very competent. The top surgeons usually do not find using robots adds much but it helps less experienced ones. I had a lobectomy back in April (VATS) and it went well. It was tough but not horrible, pain management is key so make sure they give you all the pain meds you need to stay comfortable. Pain meds cause nausea which I found terrible so also make sure you get the anti nausea meds. Things improve fast after they remove the draining tube, which is the worst part about the surgery. All in all not a nice experience but not too horrible either with proper supervision and meds. I stayed in hospital for a week, until my surgeon was confident the little leak I had in there mostly resolved. Recovery for me was long, many weeks. I had a cough start after one week (never coughed before) which bothered me a lot but it seems to have been due to inflammation or irritation from surgery and it subsided, slowly, and it eventually went away after a few months. I found that gentle slow moving after surgery helped recovery, even reduced pain. I would pace around our kitchen island holding a pillow to support my coughs and bruised incision sites (I had minimally invasive but not robotic). Take it easy, your body will still need lots of rest. I had pain meds too then, and I took them less and less as my body healed but they are important to have with you whenever needed. Can a friend of family member come help you after surgery? That would be ideal. Otherwise, are there patient support programs where you are who can help instead. I could not do much after surgery so having someone around to help out is ideal. Wishing you the best!

So sorry to hear about your friend, and your grief. Welcome!

I would seek a second and third opinions. I agree with Tom that radiation can often effectively handle mets from what people report. Also, at the very least, clinical trials should be a last resort, not just giving up.

Maybe ask for stools test and culture? Are you in touch with pain and symptom specialists at your cancer centre?

Hope your dad pulled though, so sorry he is having complications from radiation.

Sorry you have to join us but welcome RT to this wonderful forum, and to team Tagrisso (Osimertinib) in particular. Diagnosed last Spring at 49, I am on this targeted therapy too since Sep 2022. Had surgical resection and chemo before that. Hopefully your cancer responds marvellously to this targeted therapy. Take care!

Didn't the pharmacy that dispensed Tagrisso call and ask about all meds and supplements your wife are taking? Mine did and we spent almost an hour going through everything. If they are not thorough, I am sure your cancer centre has a pharmacy info line and they are usually very knowledgable and thorough. Best of luck!

My cancer centre pharmacist found contra indications with loads of herbal supplements, even cranberry and mint. She said pill form is not good but small quantities like tea or cooking should be fine, as it is theoretical risk that did not prove clinically relevant in reality. I stay away from any supplements, only take vitamin D but drink occasion mint or sage tea. Everyone best check any pills with their pharmacist/cancer centre first,

Have you tried feeding him Ensure drinks, ice cream? I am not sure why things taste terrible if he is not on any medications but maybe radiation is affecting his appetite? Maybe those who had radiation can opine. Also check with a counsellor to see if your dad has serious depression that is stopping him from eating. Hope he gets better soon!

Welcome to team Tagrisso James though sorry you have to be here! I have been on Tagrisso since September, quite well tolerated though I have a number of side effects that I continue to deal with but nothing like chemo etc. Everyone is different and some people never have side effects, others have a lot, some have them in waves that ebb then return in cycles. I do not think your wife needs to eat anything specific, just live normal life as tolerated. However she should be careful with herbal drinks and should not eat grapefruit (the only thing my pharmacist told me not to consume). All her medications need to be checked for Tagrisso interactions. Wishing her the best of outcomes!

I am not on immunotherapy but take targeted therapy, which can causes eye/vision problems. I asked my GP for a referral to an ophthalmologist and they plan to have regular checkups on my eyes. Maybe you can arrange for something similar, for peace of mind?

Hi Kamoto, my first infusion was horrific and I had the dose and one chemo med changed after that, which helped immensely. Nausea medications came a long way so insist that your symptom management doctor tries harder with other options. I almost never had nausea while on chemo, I believe thanks to one medication that cost so much money here (Akynzeo, $600 per pill)!

Forgot to add, please try your best to remain calm (I know easier said than done), it will help your dad manage his own fears too. This time between cancer suspicion and full diagnosis is brutal but do not lose hope. There is a lot your dad will be offered as treatment once he is properly diagnosed. I am not sure how much you guys already know about the stage and extent but even late stage has many effective treatment options. Try to reassure him while simultaneously demanding better and more prompt care from our crumbling healthcare system.

This is so miserable, I am so sorry you are going through this. The Holidays are not helping with delays I am sure. Few things to try: - Did you followup with your dad's family doctor? If he doesn't have one, call BCCA and ask for a GP there, they have such service for those who are not under care elsewhere. - There is a Patient and Family Counselling group at BCCA (counsellors, social work, psychiatry, and psychologists). They can be reached through the main line (604-877-6000) and asking for the Patient and Family Counselling. - Maybe 811 Nurse Line to ask if you suspect your dad has immediate need for care? I personally avoid going to hospitals unless urgent since so many people there are sick and infectious so best not to get another infection. However, if there is an urgent need, there is no choice. - There is Inspire Health, they have good support services including mental health: https://inspirehealth.ca. - I heard from people about this private ($) service (I have not used it but heard of other using it so may be something to look into if lack of care continues): https://www.blueguide.ca/site/cancer-management-services. - For urgent mental health needs if you feel you need to see someone urgently, there is the Access and Assessment Centre at VGH (803 West 12th Avenue, Level 1 East Entrance): 604-675-3700 between 7:30 a.m. – 10 p.m. Walk-ins are welcome at 7:30 a.m. – 9:30 p.m. Hours: 7 days/week/holidays Walk-ins: 7:30 a.m. to 9:30 p.m. Phone lines: 7:30 a.m. to 10:00 p.m. Open 365 days/year Phone: 604-675-3700 BTW, how come you have no oncologist? Do you have a respirologist? Who did the biopsy? It takes a while for results, especially if they have ordered biomarker testing (insist they do). However you should be able to get access to some on call doctor (either respitologist or oncologist). Canada/provinces are purposefully crashing its healthcare system to privatize it. We are in no man's zone right now. You need to be proactive and assertive in order to get good care. Wishing your dad the best of outcomes.

Dehydration sent me to ER in ambulance twice during chemo, despite drinking a lot of water. After that I put my foot down and demanded IV hydration before and after each chemo, it helped a lot and is very important.

Hi all, I have read many drink Valerian tea at night as it relaxes them and leads to better sleep. Has anyone tried it here or knows of contra-indications with targeted cancer therapy (I am on Tagrisso)? I will ask the pharmacist of course but I find real life experience very insightful. Other herbal teas I was recommended include Licorice and Juniper. Any experience is appreciated. Thanks!