LilyMir

I cannot believe these ladies were so heartless, in a cancer support group no less, what an atrocious thing to do! Casting blame on others gives many people a sense of power and superiority; I bet you they never blame themselves when they do something regrettable. My doctors asked me if I smoked but I believe that was part of the diagnosis process. They wanted to assess my risk and predict cancer sub type. Outside of healthy living recommendations, or smoking cessation therapy, there is no place for such discourse. I am afraid the stigma is very real, and even as a never smoker, I learned pretty quickly that I should not volunteer my lung cancer diagnosis info unless I have to. Heck even having told people I merely have cancer caused them to promptly stop interacting with me (parents in my kid's new school). No empathy even from educators. What a world we live in.

I hope both of you @lovingdaughter1990 @JHP find the strength to be able to support your dads in their cancer journey. We all got devastated when diagnosed, and most are knocked off balance for a while. Once a final assessment of disease extent and treatment starts, most feel a bit more balanced and focussed. In this age of pandemics and epidemics, no one knows how the future will be. News brings us daily notices of young and old dying all of a sudden. Try to think of this cancer diagnosis as a chance to focus on living in the now and here and to build the most loving memories with family. No one knows the future, so stand by your dads sides and make sure they know how much you love them. You may not feel it now but you got this and you will be able to handle it, no matter what happens. Keep up the hope, lung cancer treatment has come so far recently and many on this forum can answer questions if you have them. Wishing your dads the very best of outcomes, and you more peace of mind.

Welcome Darius! Breaks the heart to see younger and younger patients here. However, you reached the best forum for LC patients on the web. I did not have experience with immuno but I did chemo and it was not easy but it passed. Is there a reason they are not operating to remove the cancer surgically (was it because lymph nodes were cancerous too)? Did doctors consider radiotherapy? Also, I would push for every tumour sample to be biomarker tested, I can't understand why doctors are not obliged to do that for every patient. Hope your journey with lung cancer ends with good news, stay optimistic and keep us posted.

So sorry to hear of your troubles with Chemo! I felt like I was going to die when I had chemo. Such terrible side effects! After communicating with my doctors and ending up in ER twice, my doses were adjusted, and pain and symptom management doctors joined my care team. It was much better after that but was still horrible. It all passed and hopefully it killed errant cancer cells that were not visible! Hang in there, I lived on ice cream and occasional Ensure drink for a long while. I was given excellent nausea medication, pain medication, "magic" mouthwash and steroids. In the end I gained so much weight because I started to eat a lot more all day (due to steroids), which I am still trying to lose (almost 5kg). You got this!

It is taking me a very long time to recover from lobectomy, which was back in April. I started rehabilitation exercise under supervision and it is helping me a lot, especially with confidence and anxiety. I try to increase my activity but it is very hard as I hate feeling out of breath, especially with masks when out and about but I push myself a bit more every day. Also trying to do indoor exercise with my kid's game console. Everything helps but one should take it slow and be consistent. I am still struggling with consistency.

Maybe consult with Dana Farber, they have a centre focused on EGFR: Chen-Huang Center for EGFR-mutant lung cancers. https://www.dana-farber.org/chen-huang-center-for-egfr-mutant-lung-cancers/

I saw your post on Radon and have wondered myself about what could have caused my lung cancer, it is a horrible exercise as I keep thinking how unfair life is, especially when I see my peers living their full lives while my family suffers so much due to my illness. We live in a new building so unlikely Radon is an issue but I was thinking we anyways should buy a Radon detector so my family can use it whenever needed. I already have PM2.5 monitors at home, CO2 meter and a number of HEPA filters. I tell anyone who would listen that bad air is to this human century what bad drinking water was to the previous century.

I actually just saw that you are in BC. I looked up your drug and it seems not covered here but "compassionate supply may be available" and "financial assistance for patients with or without private insurance coverage may be available". This therapy was just approved by FDA in late Sep this year so I guess this is why you got little info so far. Here is the manufacturer info listed on the BCCA website: Selpercatinib (Retevmo) Manufacturer Lilly Phone 1.855.545.5922 Fax 1.844.503.7749 Email oncology@lillyplus.ca Pharmacy Sentrex Vancouver Funny, in the process of looking up your targeted therapy, I was stunned to see that my targeted therapy will no longer be offered through compassionate supply for new cases after end of Nov. Yikes, I guess I was so lucky to squeeze through (unless this means BC will be paying from Dec on).

Before I started my targeted therapy (not the same as yours), a pharmacist working with the manufacturer (AstraZeneka) called me and we had a long chat about any medications I take and potential interactions. I assume you are being seen at a Cancer centre in Canada and their pharmacists should also be able to help. Pharamcists have a huge database where they access drug interaction info. I don't think such database depends in any way whether the drug is new to Canada. The same info is seen internationally as I know. I would contact *both* manufacturer and cancer centre pharmacy and demand clear info. BTW, at least in BC, our cancer centre has a leaflet about each drug on its website, in fact two leaflets -one for patients and one for doctors. I usually read both. finally, press your oncologist for answers. If they are not lung oncologists, a second opinion can be especially valuable. Hope this helps and good luck with your targeted therapy!

Sorry you need to join us on this forum but it is a fantastic community. Hopefully you will get treatment soon and put the brakes on this nasty disease. There are many new treatments so a lot of reasons to stay hopeful. Welcome.

Good luck with your journey, wishing you the best!

So sorry to hear about your mom. Small cell LC is terrible. It took a family member of mine, 6 months from first diagnosis (was much delayed despite symptoms due to COVID and medical incompetence). His treatment also failed, which usually would buy a year or so as I read. I though heard of some patients living much longer but prognosis is is generally bad. I am sure your mom would love spending Christmas with her kids and hopefully she would still be in a good shape for you all to enjoy it. Best wishes.

A head MRI is necessary. I had a contrast CT for head and neck that was clean (this is how my lung cancer was incidentally reported) but my oncologist still ordered a contrast MRI as it is more sensitive in that region. I would ensure they do one. Sometimes doctors keep doing brain MRI for periodic check ups after treatment is done but my oncologist seems not to do that and this was one of the things I wanted to discuss with her in the near future. Too much scanning also has risks so it is a fine balancing act...

So sorry you are having this scare. Try to take deep breaths when you feel overwhelmed and tell yourself that whatever the diagnosis will eventually be, you will handle it. I recall when I was told I have lung cancer, I was so distraught and in disbelief for a while, I was off balance. The good news is that though grief and worry never totally disappear, their impact reduces and you start focusing on treatment and management of the disease. Until you know more about your mom's condition, try to focus on being together and easing her and your grief. Lung cancer is no longer a death sentence and there are many treatments even for late stage. Hopefully your mom will have options given to her by doctors soon. The people on this forum are amazing and will help with any questions you may have. Take care.

Hi LJH, so sorry you have to worry about a possible lung cancer diagnosis. Try your best to distract yourself from cancer thoughts until it is confirmed. I am not sure why they are not doing a PET, I know it is not always sufficient and can give false positives and false negatives but I think it is a necessary part of diagnosis. 16 by 12 mm is not small but is not huge either. Is it spiculated? Hopefully even if it turns out to be cancerous, it is a curable stage. Are you able to seek a second opinion to ensure doctors are making the right call to wait? 3 months is not too long of a period in any case (it is always risk vs. reward with this miserable disease) but I hope this ends very happily for you. As a mom of a 6 year old, I know the anguish and worry this must be generating but try to think positive until you know for sure. There is a light at the end of the tunnel, either way, hopefully.

We are lucky to have you here Judy, I really appreciate your insights, advice and positive attitude. Here's to so many more Halloweens with NED!

Bizarre. Protocols in BC are international standards. Were all 3 doctors at BCCA? The 3 oncologists I talked to there and my respirologist all in Vancouver said no immuno for EGFR. Same for international opinions I sought. Did you try a remote US second opinion?

I had 4 adjuvant chemo cycles after resection by lobectomy.

Aha, of course, CT is not done for brain typically and one needs an MRI for that... Well the good news is that if there were bad things in the brain, the symptoms would only worsen with time, not just appear for a few days and then go away. Sounds your seizure like symptoms are related to contrast and it is great you are seeing your oncologist soon (maybe they can order an earlier MRI). Make sure you discuss all your symptoms then, and ask (nicely demand :) for solutions. I go with a paper printed list of questions when I see my oncologists since they are like a full moon, seen once a month if that, and they are always in a hurry and they make me forget things due to this hurriedness! I am OKish but have side effects from adjuvant targeted therapy (Tagrisso). Fatigue, diarrhea, acne, and recently some blood in nose and very dry mouth. I am seeing my oncologist today and have a bunch of tests to do. Feeling so anxious and hoping the tests are good. Damn this disease.

Hi Justin, happy the seizure activity is gone, hurrah for that. Why is the cancer nurse giving opinion on anything though, she is not qualified. Can't you ask to speak with radiology directly, complain about your reactions after scans and ask for a solution in future? If not possible, can you raise the issue with your oncologist? GP? BTW, why do they say there is too much scarring and inflammation, from what? Was that visible on your latest CT? I would hound them with questions until I am satisfied with their answers. I learned that the very hard way. Take care!

Let her eat anything she usually likes , no matter what it is. I ate so much ice cream when my chemo made me feel terrible at first. I also drank high protein meal replacement drinks flavoured with chocolate. I am not sure what stage your mom is and chemo can be certainly brutal but it will pass, try to have her focus on hope and better times after chemo. Make sure her oncologist knows as they may have solutions. She may benefit a lot from engaging a pain/symptoms management doctor as well as a counsellor. Wishing her the best!

Sorry it will be a long wait Justin but glad your seizure symptoms are gone! I also have an MRI scan for the 27th; they are double checking a spot in the liver that was observed before my cancer diagnosis- they thought it was benign at the time but wanted to double check with hepatic specific contrast as it did not show well on my checkup cancer contrast CT in Sep. I guess we will be worried and waiting together, solidarity! The scans seem never-ending so we will have to roll with them I guess. It is Thanksgiving Weekend in Canada, I am thankful for the great people on this forum. Stay on touch!

Re. hair, it is not vain, we live in a society that often judges us by our hair and looks so it is a big deal in the beginning. As Laurel77 said, not all chemo makes you lose your hair. Mine just thinned (so much) but to an outside observer looked normal and people would not know I was very sick! However, my locks seem to have lost their bouncy curl and are now much flatter, frizzier/damaged and merely wavy. I don't feel myself still but then again lung cancer changed everything about my life. Hair is not remotely a priority for me but I still miss my curls. On the bright side, I coloured my hair for the first time in years and it felt good. Now if I could only find a hair salon that can cut and style my hair in open air!

Hi and welcome to this wonderful group. The others gave you great advice but I will add a recommendation to try and rest so you give your body healing time. If you can have it or can afford it, consider taking medical leave so you can focus your energy on healing. This may also protect you this winter as COVID surges while your immunity is likely to be compromised due to chemo. Stay positive and hopefully you hear good news soon about your treatment working. Best wishes.

Gosh, that's tough, hope he gets better soon and you never catch it. COVID is certainly not a cold and symptoms vary a lot initially and later on, I know that from family members who had extremely different outcomes. Try to have an extra HEPA in the room you stay in, open windows in the house and wear N95 and glasses when you venture to other rooms. I heard many people were able to dodge household COVID with extra precautions. Please take care!