Steff

Hi Carolyn, glad you have shared your story. Another member called "All Over the Place" was just asking about Afatinib as her mom will begin her treatment with it soon. I have recently heard great things about the drug and am so happy to hear it is assisting in your battle and I am doing my official goofy NED dance for you. I hope all goes well with your next MRI. Take care, Steff

Diamond, Was your dad receiving radiation near his throat or vocal cords? If so, that could be a reason for loss of voice. My mom's current cancer is on her trachea. Her voice has been affected since July. She didn't have a voice for an entire month. Come to find out she had a large pleural effusion and a bad case of pneumonia. So be sure to keep an eye on your dad's blood counts...every sign of infection was there in her blood counts but the doctors didn't pay much attention because she wasn't running a fever. 2 other reasons why my mom loses her voice - breathing troubles/low oxygen level and persistent cough causing everything in her throat area to become inflamed. Currently her treatment regimen is working and her cancer has not progressed, but she continues to battle cancer related ailments. So, what I'm saying, my mom usually loses her voice due to things caused by cancer, but not because the cancer has progressed. I'm not saying that your dad's loss of voice isn't related to something more serious and that you shouldn't be concerned, but it may just be yet another symptom of dealing with a chronic health condition. Definitely follow up with you dad's oncologist as they may have an explanation as well. Take care, Steff

Jane, I am so very sorry, I wish I could take away some of your pain. Hugs, Steff

Hooray! Things are looking up! I hope that the two of you can have a restful weekend after receiving good results. Like you said, reaction to radiation is different for everyone. My mom was dealing with a very small area that was being radiated and her pain was much less after the first week or so (5-7 sessions). She was also receiving chemo while receiving radiation.

Bes, I think you said it best when you said the 2 hour test for your husband is grueling. The entire cancer journey is grueling, for all of us involved. For that I am so very sorry. I understand pain, my mom has had pain throughout her 2 lung cancer diagnoses. One thing that I have learned is to begin taking a laxative or fiber to keep things regular since it sounds like your husband has been an maybe taking narcotics for a bit. I've also learned through my mom that her pain was relieved rather quickly when she underwent radiation. I hope that is the case for your husband as well. With my mom's diagnosis of NSCLC recurrence, it has seemed like it's been an uphill battle for several months. But I can tell you that she has finally plateaued for now. With the treatment options available to your husband, I bet he will have a plateau in his battle as well. I wish you both the best. Take care.

WOW, I am so happy to hear that there is another treatment possibility for him. I wish you and your husband the best in this new part of your journey. Maybe you can get books on tape/cd/etc to make the long trip a bit more bearable?? Take care!

Jennifer- I'm happy to hear that your husband is feeling better with his stent! You are right on target with your statement that cancer blows...sorry you two are having to battle this thing called cancer. I am hopeful for the clinical trial - had he received Keytruda in one of his other treatments?

Hi Holly, I may be completely out of line commenting on your post because I am a caregiver, not the warrior. My mom lost her hair about 2 years ago when going through her first fight of lung cancer. She's always had short hair and really isn't attached to it, so losing it was not a huge deal for her. I shaved her head when she couldn't handle the shedding anymore (hair falling into her food was the breaking point for her) and it was the most intimate time. It was a way to "pamper" her and save her from having to do it herself or go to a salon. She never lost her eyebrows and her eyelashes fell out after treatment was over and were gone for about a month. A few things that she really likes now - her hair grew back wavy (which she has always wanted), and her leg hair is still mostly gone (fabulous during swimming season!!). She got a free wig from an agency that helps with those things, but only wore it once. The one thing she really used the most was a soft knitted beanie. Her head got cold easily and she wore it all day at home and especially when she slept.

Hi Diamond, I am sorry to hear about your father. I too, have a mother battling lung cancer - a recurrence of NSCLC. My mom is quite strong, as many mother are, but there are days that I see she is tired. She is also a caregiver for my dad who is disabled due to a movement disorder. I feel your pain, fear, and sadness. I'm not sure if you live in the U.S. but if you do and haven't gotten in contact with a local agency on aging, they can be a big help. My mom works with our local Aging and adult Care office and they have been really helpful for her - providing various supplies and education on what's available to them. She still refuses to get a caregiver for my dad as she still wants to do as much as possible, but knows that the option is there.

All Over the Place: Here are the basic definitions of targeted therapy and Immunotherapy - they are different, but both can be equally effective. I've also included the links to the Lungevity pages that have more information. Targeted cancer therapies are a type of biological therapy that aims to target cancer cells directly. They target certain parts of cells and the signals that cause cancer cells to grow uncontrollably and thrive. These drugs are often grouped by how they work or what part of the cell they target. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy Immunotherapy is considered a type of biological therapy. It aims to enhance the body’s immune response and stop lung cancers from escaping from the immune system. Immunotherapy is a treatment that strengthens the natural ability of the patient’s immune system to fight cancer. Instead of targeting the person’s cancer cells directly, immunotherapy trains a person’s natural immune system to recognize cancer cells and selectively target and kill them. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/immunotherapy I'm not sure that someone would receive both targeted therapy and immunotherapy, but I have heard of people receiving radiation and immunotherapy at the same time. And Keytruda (which is an immunotherapy for those with the PD-L1 mutation) is now recommended to have chemo combined with it during the first 8 or so treatments. The doctor may not be considering radiation at this point because they are considering surgery. For my mom's situation, if they would have been able to remove the final lymph node that was involved, she would have not had any follow up treatments. But be sure to ask why they are choosing this specific treatment plan. If they do not give you and your mom an answer you understand, continue to ask questions until you do understand. And never be afraid of looking for a second opinion.

I'm here, letting you know that I can relate...feeling alone, can't sleep, feeling the desperate need to learn everything about lung cancer as quickly as possible, and scared to death of the unknown. My mother has adenocarcinoma as well. She was originally diagnosed in 2014. She is now battling a recurrence of lung cancer. Please believe me when I say that it WILL get better. The initial waiting and initial diagnosis seems almost worse than the treatments themselves. Now that you have found us, you are not alone. Everyone who has ever responded to my posts on these forums have helped me feel better with words of encouragement and sharing their personal experience and knowledge. Please reach out to us, we are here for you. I am sorry you and your family are having to deal with all of this. Sending hugs your way.

Hi there, Sorry you are frustrated (rightly so). Waiting is the worst, especially when our loved one is struggling with medical issues. I just wanted to chime in on the lung inflation - my mom just had a mostly collapsed lung due to a large plueral effusion (she hardly had any breath sounds in her right lobe, which is missing the upper lobe). She was in the hospital for 2 weeks until they were able to successfully drain the fluid and get her on her feet again. Her lung was partially deflated for much longer - we are suspecting at least 3 weeks. When she had her upper lobe removed a few years back, her right lobe was deflated for a few days and it naturally re-inflated on it's own. So my overall message is that within a reasonable amount of time, lungs can re-inflate, even on their own. Perhaps once the stent is placed, the lung could re-inflate on it's own, but it's not a big deal if they have to help it. Best wishes for you and your husband...sorry you are playing the waiting game. Please know that we are here any time you need to vent or have questions, no need to bang your head!

I am sure there is a perfectly good explanation as to why they would biopsy the lymphnode, I'm just not sure of the answer...someone else may be able to chime in and give some insight. I can see where your dad is coming from, my dad is kind of the same way - he doesn't have cancer (that we know of), but he has a movement disorder similar to parkinson's. He has gone from a completely independent, smart, funny man to someone who sits in front of the tv because he falls all of the time. It is sad to see when our "big, tough" dads lose their independence. You are all brave in taking on this battle with your dad. I wish you the best and hope that whatever he decides you all are at peace with it and his battle is not too taxing.

Deanna, I am so very sorry that you and your family are having to deal with this dreaded journey. Hopefully docs are able to come up with an effective treatment plan that makes all parties satisfied. There are many treatment options besides surgery and chemo/radiation. In fact, there are now immunotherapies that are being used for first line treatment and are more effective than chemo. To find out all of the options available to your dad, make sure they do a bio-marker/gene mutation test on his biopsy. That will tell you what, if any, other types of treatment is possible. make sure you are also finding out what type of lung cancer he has (small cell, non-small cell, etc). This way you can begin to do your own research, if you like. When my mom was first diagnosed with her recurrence of non-small cell lung cancer, I used some of the questionnaires on the Lungevity website to help guide me in my query with the docs. There is a lot of great information on the Lungevity website, along with these wonderful forums. As far as where you should post, feel free to post where ever. I see that the Introduce yourself forum gets the most action. Some people just continue their posts on the thread of their original post, others post in specific forums. No matter where you post, we will find you (I don't mean that to sound scary!!). There is a button to push to see Unread Content. Many of us use that to find new postings. Please reach out when you have questions or need to vent...this is a great place to do both. Also, don't be afraid to look around...many people's stories have been very helpful for me when looking for information on my mom. Take care, best wishes for you and your family.

Bes- It's not all that uncommon for lung cancer masses or nodules to be "hidden" on xrays because there are so many different things they can hide behind. CT's do a much better job at helping docs see them. My mom is a great example - her "1 year all clear" chest xray looked "normal". After continued shortness of breath, her new pulmonary doc began reviewing scans and xrays. He saw something on her "all clear" chest xray. They decided to take a better look and found cancer behind her trachea that was closing off 70% of her airway. A CT shows it better, but it is still really hard to see even then. We were truly angry for a long time and are probably still a bit angry that it had been missed for over a year and 3 follow-up chest xrays. But all we could do was get over it and move-on so we could deal with her treatment and recovery. Luckily, her cancer supposedly has not spread, so we are grateful, but not everyone is that lucky. All that I can say going forward, is to continue to push for answers should a new symptom arise and there has not been an explanation for it - and don't always accept the "It's just chemo/radiation/other treatment side effects" answer because it's not always due to side effects. My mom recently spent 2 weeks in the hospital because of pneumonia and a pleural effusion in which they drained over 2 liters - this was also missed by a chest xray. My mom used to be nervous about "crying wolf" but we are to the point that her health is way more important than worrying if we are pestering her docs. What I've learned from all of this is to always ask questions and should you have other questions after your appointments, contact your docs and ask them.

Anna, If you and your husband are wanting to pursue the surgery option, I suggest a second opinion. My mom has similar health issues and her surgeon did not even blink at the idea of a lobectomy. And she did fine with the surgery. In most cases, you can start the 1st recommended treatment while you await a second opinion, but you will want to double check with the docs. I assume your husband had a biopsy??? If so, was his cancer tested for any mutations or other biomarkers? Some immunotherapies are now considered to be first line treatment for those who meet the criteria.

Hi Jane, I am sorry to hear that you and your husband are having to travel along the scary journey called lung cancer. I too, am a caregiver - for my mother with a recurrence of lung cancer. She is currently on chemo and Keytruda. I know how you are feeling and many others on these forums do as well. I reached out to this group a few months ago and they have been a great help, both for increased knowledge and hope. There are many survivors on here as well. Please know that you and your husband are not alone in this - we are here for you. This site is not only helpful with all the discussion forums, there is also a great amount of information about the different kinds of lung cancers and treatments that are easy to read and understand. Is there any specific help/support you are looking for? Thinking of you, Steff

Linda, SBRT - It's a mega dose of radiation. It is usually given in 1-5 doses instead of several small doses like typical radiation treatment. I hear it can be much more effective and is not available for all "tumors". My mom had low dose radiation, so that's about all I know about it. I'm sure that Tom and Judy can give you better information.

JephKay, Your question is a good one and quite valid. My mom is on Keytruda + Chemo for a recurrence of NSCLC. She's completed her 3rd dose. I've learned quite a bit along the way, but your wife's situation may be a bit different since it sounds like she is receiving Keytruda as a first line of treatment. Like Tom said, using Keytruda as a first line treatment is fairly new. Research shows that Keytruda is usually less harsh on the person and often times more effective than chemo. The fact that your wife has 100% PDl-1 expression gives her a really great chance that Keytruda will work. Should Keytruda not work for my mom, she will have the traditional methods of treatment available to her - Chemo + radiation. I would imagine your wife will be no different in that there will be another treatment option available for her - possibly the traditional chemo and radiation. But with the quick advancements of new lung cancer treatments, there may be an entirely new treatment option if/when Keytruda stops working for your wife.

Thank you, Danielle. Thank you for putting so eloquently everything that I feel and everything that I don't know how to say (or don't want to say). I personally thrive with schedules and routines. Anything out of the ordinary puts me in a fury and I want to melt. My mom's cancer feeds my fury daily! I typically want to punch people when they tell me to make sure I am taking care of myself. Your statement "so much of what we really want for self-care is actually just a return to routine" hits the nail directly on its head. There is no better way to describe the joyous and often tumultuous job of care giving. Thank you, thank you. I am crying because someone else "gets it" and has so perfectly written what so many of us feel.

Happy dance!! Great news!!!

I am very sorry for you and your family's loss. I am hoping that one day soon you and your family will find peace in these heartbreaking times.

Fabulous news, Ernest!

Hi there, I am happy that your mom is allowing you to go with her to the doctor. One important question to ask is if more than 50% of her cancer cells test positive for PD-L1. If so, Keytruda has become the recommended 1st line treatment for NSCLC with PD-L1 mutation, at least for early stages. Perhaps the doc is waiting to see how she responds to Keytruda before making a suggestion for lobectomy. Another question would be why only Keytruda and not Keytruda and Chemo together for the first 8 sessions - the latter increases the effectiveness of the overall treatment. And as Pegi said, there are no dumb questions and be sure to take a notebook to write everything down. I used these lists of questions to give me ideas of other questions to ask (there is a tab specifically for immunotherapy) https://www.lungevity.org/for-patients-caregivers/asking-right-questions/questions When my mom was initially told her cancer recurrence was inoperable and that she would be treated with Keytruda/Chemo, she felt she was just buying time. Her ocologist (which doesn't have the most compassion) said that she was indeed buying time. But she would be buying months and maybe even years. I personally do not feel you are giving your mom false hope. The more I study Keytruda and see the amazing help it is giving people (including a relative that has used it for the past 2 years for advanced stage melanoma), it is easier to feel optimistic. The fact that your mom is already healthy is good for her. I also feel that when we believe something, it can either help us or hinder us. Helping her to get over the idea that she has a 2 year expiration date may help her health-wise in the long-term. I'm so very sorry you are having to travel on this journey with your mom. No matter how old we are, it's still our momma who is sick and fighting for her life - it's not easy. Take Care

Karin, My mom had an right upper lobectomy in January 2015. She continues to have pain (no numbness that she talks about) around the incision and back to her shoulder blade. Her surgeon and oncologist say it's pretty common due to all of the nerves in that area. The pain in her shoulder blade was bad enough recently that she was pretty sure cancer had spread to her bones (she's currently battling a recurrence on her trachea). Her scans showed that the cancer had not spread. She has tried different bras because the scar is where they rub but hasn't had much luck. There are some ladies at the cancer support group that she attends who swear by rubbing lotion with marijuana in it on their scars to help with pain, but my mom doesn't want to use anything like that - I see you live in WA, so maybe this is an option for you (For the record, I am not in support or against it!). I've heard both good and bad about it and you may want to check with your oncologist before thinking about trying it. As mentioned by Tom, water aerobics and just being in the water also helps my mom with the pain. Sorry to hear of your constant pain, take care.