LilyMir

Hi Jacob, this lack of care or any empathy is horrifying, and I am from BC where we now ship cancer patient to Bellingham for care since our healthcare system has been mismanaged to the ground. You must seek better care for your mom, the US has some of the best care anywhere (hopefully she is insured). From experience, you have to ensure things happen. Never sit idly waiting for anyone to call. Call and (respectfully but firmly) demand immediate care and don't stop until you do get that. Being left in such pain is medieval, my gosh what are these doctors thinking! Also, doesn't you mom know many in that healthcare system if she worked in it for decades? Now is the time to call for urgent "help" within the system.

Hi Jeff, When I had chemo my hair only thinned (a lot, like half of it was gone) and despite knowing it is not important in any way I grieved and cried in the shower every single time as I combed bunches of falling hair that clogged the drain. My chemo was also very hard on my veins, incredibly annoying to start an IV and then pain from toxicity. Sometimes it helped me just to cry and/or to acknowledge my grief and loss of a "normal" life no longer possible. Playing strong all the time is tough. It is OK to grieve a cancer diagnosis and to resent treatment mayhem but hopefully your mom will stay optimistic. Best of luck to her!

So sorry to hear Bridget, that is tough. I can relate, it has been such a miserable couple of years for me losing dear loved ones and worrying about other diagnosed all while dealing with my own LC shock. We have lost my grandfather, uncle, uncle's wife, and my husband's uncle to COVID. My husband was diagnosed with skin cancer (but got surgery and is supposedly cured). My young brother in law had sudden cardiac arrest and only survived by a miracle (but survived and with no brain damage). Life is just so weird, feels to me like it has been going down hill since reaching age 45 but we are still alive and kicking and Spring is in the air! I feel so much better when I garden, I lose myself with the hummingbirds buzzing around dangling from my flowers. Hopefully your wife will beat the cancer again and your friends will be able manage their ordeals in best possible ways with you supporting them. Take care.

Sorry it turned out to be LC but glad you got superlative care and it was cut out in the bud, cause for celebration!

I cannot believe your doctor is giving a "do nothing" as an option for a first recurrence of a stage 3, not to mention those life "expectancy" numbers! I am not sure if the Dr has more critical info we don't have (scale of recurrence? type of tumour? your general health?) but the option of just let cancer spread they offered to you sound strange, to put it kindly. We have stage 4 patients living long term and thriving, let alone stage 3. As an oncologist, they should have recommended best treatment unless your health is so poor in other ways or recurrence is very horrific (even then they should offer second line and third line treatments etc and clinical trials). I would certainly go ahead with treatment but feels like you should seek another opinion ASAP, from a specialist in lung cancer at a reputable cancer centre. You got this!

Do you know which mutation(s), if any, they found? Are any actionable mutations present (meaning mutations for which a targeted therapy currently exists)? How much PD-L1 was expressed (which is usually a predictor how well immunotherapy may work).

I posted a note on our forum about the event a while back. The organizers said they will post the recording so that will good for anyone interested who missed it.

Hi Karen, yes that anonymous patient asking the question was me 😆 . I have read some small studies observing benefit, and the premise makes some sense, but I am not sure fasting is a solution that is practical in any case (nor of interest to be studied by big Pharma!).

Hi, sorry to hear about your husband. Herbal teas and supplements may interact with cancer treatment drugs including reducing their efficacy. Highly recommend you clear every single one with your husband's oncology team before starting. Restricted diet may lead to some nutritional deficiency so ensure a healthy and varied diet whenever tolerated. Have heard of intermittent fasting possibly being helpful for cancer but not just no sugar diet; we had a discussion on this issue recently on this forum. I don't think this is something doctors believe in.

Interesting angle, thanks for this. I have been hearing about intermittent fasting for a long while. This is restricting all foods (limiting calories), not just restricting sugar. I am not sure how they go from observation of correlation to causation on a small set of patients in this study though. Also, looking at their diet, one wonders if such life is better than cancer, I mean how long can one tolerate brown rice and broccoli? "The fasting-mimicking diet was made up of two parts: For five days, people ate a plant-based, low-carbohydrate, low-protein, calorie-restricted diet. On day one, people could eat up to 600 calories. On days two through five, people could eat up to 300 calories. For comparison, 1 cup of brown rice contains about 216 calories and 1 cup of broccoli contains about 31 calories. The people received a list of foods and beverages — with specified maximum amounts — they could eat during these five days. For 16 to 23 days after the five low-calorie days, the people could eat whatever they liked, but were advised to follow guidelines for a healthy diet." More seriously, I recall hearing from a top researcher that they believe the best way to have a very long life is to eat half what we now typically eat. With cancer, I guess this has merit; I assume when food is scarce, the body will start shutting down non-important parts, and with cancer cells being so hungry, it makes sense for the immune system to get rid of them fast? BTW, I am not aware of any evidence that lowering sugar intake increases survival. One also should be very careful with fasting so as not decimate muscle mass or cause malnutrition. Interesting area of research indeed.

Regarding the 'no sugar for cancer patients', I am not sure what basis was ever used for such a claim. A human body normally regulates glucose level in the blood and keeps it at a narrow range (a process called glucose homeostasis where the body uses insulin to lower blood sugar, and glucagon to raises it). While cancer cells have faster metabolism (a fact used in the PET scans we get), eating more sugar does not increase your blood sugar to abnormal levels unless one has other diseases, like Diabetes, affecting sugar regulation. Excess sugar beyond that needed for normal body function is stored in body in form of fat etc or released in urine. Being overweight can cause a host of problems, sure, however, blood goes everywhere and feeds all cells so sugar does not just "feed cancer cells" (it feeds all cells!) and "starving cancer" means starving oneself, just not possible. I hear of research trying to find ways to indeed just starve the cancer cells by changing their metabolism but I am not aware of any clinical usage yet. Certainly we all should eat healthy. Variety and balance is the key though. To me, life without any sugar is just bleak.

Sorry to hear about your mom Jacob! A LC diagnosis is brutal but after recovering from the shock one has to move very fast to figure out: what kind of LC, are there actionable mutations, what chemo/immuno/targeted therapies are relevant. Given it seems to be stage 4, I assume doctors will do radiation? For answers you need to consult: a specialist LC oncologist, a radiation oncologist, possibly a thoracic surgeon, and a pain and symptoms management doctor. As to what to tell your mom: tell her to ignore stats on Dr. Google, they are very outdated, to have hope since LC therapies advanced by leaps and bounds over past 5 years, to seek support from this wonderful forum should she need to connect to fellow patients or explore other experiences. Personally, the first thing I did after my diagnosis was put my affairs in order, not that I was told to expect immediate disaster (doctors were talking curative intent) but it made me feel some form of control in a new phase of my life where nothing else seemed controllable. This is a terrible disease but survival, many long term, is improving so fast. Good luck!

Welcome and sorry you had to join us! I have the same mutation (EGFR) and following surgery was given adjuvant chemo and now adjuvant Tagrisso for 3 years. Reasoning given to me was that clinical trials had this sequence (they estimated chemo reduces recurrence risk by about 15%). During my chemo, which was hard, my oncologist mentioned that some top doctors even moved directly to adjuvant Tagrisso after surgery but that she prefers to adhere to evidence. Most recently Astra Zeneca released results of (ongoing) clinical trial and Tag seemed effective with and without chemo but I believe the numbers vary with chemo still holding some advantage (probably more so for higher stages but it has been a while since I read their papers). The answer is thus a bit complex if not even evolving (what's the risk of skipping chemo?). If you have complications (e.g. kidney or liver issues), it may be best to discuss risk vs reward of doing chemo before Tagrisso. If you are otherwise healthy, and/or your stage is not early, maybe discuss the chemo regimen they suggest and ask lots of questions. Also should you decide to take chemo, always seek help if things get too hard, they can always change medications or doses (they did in my case and it made such a difference). Chemo is harsh and caused me some long term damage but it was something I am now glad I had done so I do not keep thinking what if (kind of throwing everything at the cancer while I could, I was 49 at diagnosis and my little boy needs me!). Here is something to start your reading on this issue but there are more recent findings that will probably be published soon by Astra Zeneca including OS (overall survival), not only DFS (disease free survival): https://www.astrazeneca.com/media-centre/press-releases/2021/tagrisso-extended-disease-free-survival-regardless-of-prior-adjuvant-chemotherapy-in-early-stage-egfr-mutated-lung-cancer.html# "In this exploratory analysis of the overall trial population, adjuvant Tagrisso reduced the risk of disease recurrence or death by 84% in patients who had been treated with prior adjuvant chemotherapy (based on a hazard ratio [HR] of 0.16, 95% confidence interval [CI] 0.10-0.26) and by 77% in patients who had not (HR 0.23; 95% CI 0.13-0.40). DFS benefits were similar across each stage of disease." Good luck!

Welcome Jeff and sorry you have to join us. I am on Tagrisso too. Let us know if you have questions.

Sorry to hear about repeated infections, can you wear an N95 mask at work? This can reduce respiratory infection chances by a lot but I know they can be a drag. For me I wear masks all the time as I hate being sick, on top of being run down by surgery after effects and cancer treatment side effects. I am not sure what the current standard of care is for stage 1 but at least for my mutation (EGFR exon-19), it seems to be becoming common to offer adjuvant chemo and/or targeted therapy as a precaution. It all comes with risks vs. rewards so the picture is not completely clear. If you have the same mutation as me, I would ask your care team about adjuvant use of Tagrisso for example, which is much less toxic/brutal than chemo. Maybe it is not standard of care but it is good to know and read up a bit if you are not confident your current care is sufficient. Second opinions are always a good idea too. Having young kids is a most terrible thing about being a cancer patient but stay hopeful that you may well have been cured. Regular scans are a must though for monitoring as I understand, at least for a few years. Stay strong, you got this!

Hi Bri, I can certainly relate. I was diagnosed in my 40s, just as my kid was entering school, and I thought it was the most rotten luck. I am sure at 37 (there are others here in their 20s) feels totally unfair. Don't try to second guess what caused your LC. If non-smoker, it could be anything from air pollution, radon exposure in homes or just shear terrible luck. Even smokers are not that frequently struck with LC so it is complicated to predict. Focus on the future and the fact that you were only stage 1. This means your chances of recurrence are low and chances of being cured are high. This is great but make sure they follow you up closely since LC is very sneaky. I was diagnosed stage 3b, after radiology missed my tumour 4 whole years ago, when I probably was stage 1. I was so upset, so let down, so angry and so scared. Time heals a bit and you get used to the fact that you have been so unlucky getting LC but lucky you are surviving it. Most people do not understand that I am still so worried and anxious, a year later with my scans showing NED. It is so hard living normally after cancer but one of the good things about it is that I no longer care about anything or anybody except what and who matter most in my life. I do not celebrate milestones of survival but have genuine hope I may be cured and try to focus on one day at a time, which is all I can do since no one can ever guarantee me anything (mind you no one can guarantee living tomorrow cancer or no cancer). Re. losing weight, have you tried gentle walking? I find myself out of breath easily so walking seems like an ideal exercise. Motivation often times is lacking but I keep trying. BTW, non smokers tend to have specific mutations, did they test your tumour for mutations (very important to know)? Did you get adjuvant chemo and/or targeted therapy?

Hi Dora, sorry you have this scare but try to take deep breaths and not panic. The SUV you reported seems quite low but 1.1 cm is a biggish lesion so the doctors must follow up on this. They may opt for rescanning every X months to see if there is any growth. They may offer biopsy. Depending on location, biopsy (in a skilled dr's hand) is routine unless the location of the lesion is complicated or near critical anatomy like the heart of the flood vessels. Try not to worry too much (so hard, I know!) but make sure they followup since even if it is lung cancer, catching it very early means chances for a cure are very high. Best wishes!

Hi, the risk evaluation for lung nodules depends on many factors including size, spiculation, growth, and factors related to the patient like smoking status, age, etc. Having said that calculating risk is not getting an answer so hopefully your doctors will either biopsy it to get a definitive answer, or at least monitor it very closely until they are certain that it is benign. The biopsy is an easy procedure if the location is not in a dangerous or complicated place. I’m sorry you have to deal with this worry in addition to your other worry, but hopefully both issues will be resolved soon. Just make sure that they do not ignore that nodule because nodules that are spiculated and of decent size are risky and you better catch anything very early before it spreads. Good luck.

Hi Marcia, I had a lobe removed and it was a slow and tough recovery. I still get bouts of chest tightness and some shortness of breath but it seems to be correlated with my stress levels (I am being followed up regularly though it is becoming longer in between check ups). Right after surgery, I had a small air leak and I recall terribly scary sensations of bubbles and motion in my chest especially when I cough etc. The surgeon kept my drainage for a whole week and even when removed, some air escaped inside and took many weeks to be absorbed by the body (was followed up by X-ray until it was resolved). This though should be something that happens right after surgery and should heal in a matter of weeks, not months or years. I also recall horrifying feelings of hot fluid spilling inside my chest which I was told are faulty nerve sensations due to trauma to nerves in surgical area. It was so scary. Again, such sensations should be gone in weeks/few months. Have you been evaluated with imaging to investigate the reason for your sensations? I strongly recommend having a respirologist on board, and a lung medical oncologist (to be on safe side for any stage, LC is very sneaky).

A year wait for pain management doctor? This is not right, terrible care. Can't you change care provider? As for blood in stools, if this has not been a one off, I imagine should be treated as very urgent to investigate. I had no idea US system has such huge delays in care. Do you not get followed up with oncology?

Most EGFR LC patients are put at 80mg, the regular dose, as far as I hear. Some are put on a half dose, 40mg, if they suffer severe side effects at the regular dose that they cannot tolerate. I just googled a bit and though there seems to be no guidelines for double dose, 160mg, it seems that at least some cases were observed where double dose much increases effectiveness/durability of Tagrisso in controlling the cancer when there are brain mets: https://www.jto.org/article/S1556-0864(21)02914-2/fulltext. Hope this gives you hope but I recommend you always ask the oncology team treating your husband all the questions you guys are wondering about including asking for resources to better understand their treatment plan if you have any doubts. Second opinions are always a good idea in cancer too, especially if you do not feel confident/comfortable with the first opinion.

Dana-Farber's Third Annual Webinar, “Living with EGFR Mutant Lung Cancer: A virtual forum for patients and caregivers” on Zoom https://dfci.zoom.us/webinar/register/WN_pzhE_J19TIy_NYIRfwkcmg

I would insist on talking to a medical oncologist specializing in LC. Surgeons and pulmonologists are not the ones who should decide whether systematic therapy is needed. Some surgeons are so quick to claim they "cured" a cancer. Hopefully you are cured, and chance are that you are if the cancer was vert early stage, but consulting a med onc is imperative in most cases.

Congrats on 2 primary cancers caught early, that is awesome! Recurrence risk in LC after "successful" surgery differs depending on tumour stage. Adjuvant chemo and targeted therapy are common even for early stages in certain cases. I would seek second and third opinions before skipping adjuvant treatments after surgery. Someone here was stage 2 and was quoted a not negligible recurrence risk of around 30% if I remember right. Even stage 1a can recur so do your homework and make your decision based on balancing the risks of possible therapy to those of just waiting and watching.

I am not sure about CT sensitivity for GI tumours, though expect it is sensitive for bone mets, but you should ask your doctor. What I don't understand is why they are not scanning you earlier if you have worrisome symptoms. July is quite a wait. I was always told scan frequency is subject to change based on symptoms. Is the blood bright red? Sometimes this indicates a haemorrhoid. Blackish blood comes from deeper in the GI as I understand but any blood should be thoroughly investigated, even if the reason is related to inflammation, drug side effects etc.