I am 57 years old and I have stage 4 Lung Cancer. I want to connect with other people going through what I am going through. I am tired of feeling alone.
Introduction : I am 57 years old and I... - Lung Cancer Support
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Enjoyabull
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scifiknitterBlogger
Enjoyabull,
This is a responsive community, you are officially not alone!
Anita
Thank you, Every time I read someones post they have some really interesting or remarkable mutation. I have only had one good scan hoping the next one is good since I am back on Carboplatin. But I never read about anyone that is searching for the right treatment. I am discouraged because I dont have any treatment news thats good to share.
I understand where you are coming from. The patients with mutations (like me) can kind of hog the discussions around treatments.
I dont think there is anything wrong with hogging discussions. Its exciting for you to have success. But I also would want to hear from other lung cancer patients like me 😉 I cant imagine I am the only one going through all these different treatments. You keep hogging! I will keep applauding!
You are definitely not alone. Unfortunately my father is in his third line of treatment and also does not test positive for any of the gene mutations. First line was carboplatin and something else (I forget right now) he did not handle it well. Next was Opdivo, he felt great but is was not preventing the spread of new disease and now he is on abraxane. Seems to be tolerating it well, has a treatment today and is due for a follow up scan in a week or so. You are not alone.
scottcharlop
That does sound like me. Well I wish your father well with the new treatment and I hope we both start getting relief. I actually feel pretty good today and I am grateful for that.
Our motto is "one day at a time"
How is your dads activity level? How old is he? I had the same experience as him and I was wondering how he feels on a daily basis?
scottcharlop ??? That's my dad maybe he can answer you. I only know what he tells me 😜 From what I observe he is fairly active but tires very easily. He can go out in the morning for his usually breakfast, take his dog to the dog park, works a little from home, naps in the afternoon and can usually go out to dinner or a movie at night w my mom.
Thats way more active than me. I am hopeful this chemo helps me feel better.
Me too 🙏🏻
You are not alone, I'm a 55 yr old with stage 4 lung cancer I've done chemo, now doing opdivo, my scans showed most in dormant, but still have stubborn one,but feeling ok, hope u r feeling ok to, keep me informed how u r doing, nice talking to u,
Opdivo didn't work for me, I showed progression. Where else is your cancer to be a stage 4? Do you have any pain? I am glad you are feeling good. How long since diagnosis?
I was diagnosed in april 2016,I have it in lymph nodes in left lung, 3inch mass in right lung and bone spot on right shoulder, I have some pain worse after treatment,I get next scan in March to see if opdivo is working, I had preventive and it didn't work, hoping this does,hope u r doing ok,the 3inch mass is the one it won't go away the others r dormant,
Maybe by the time your scans are done the mass will have gotten smaller. I have it in the same place as you plus in my hip, pelvic, and sternum and my lymph nodes in my neck and chest. I too just had favorable results from my scans so I am feeling positive. I just wish I wasn't on all the pain meds. They make me feel stoned all the time. I also added Ativan for anxiety. It helps. Are you working? I am house bound but am praying that if this treatment works I may get back to some activity level. I miss being active.
I'm not working have herniated disc,I hope u keep getting better,I push my self to do things,tired alot.
I'm 76 yrs old , I have stage 4 nsclc 2012 . Had craniotomy , brain tomor removal & Cyberknife radiosugery . On Targeted ( EGFR) therapy . Nov 2016. MRI showed a recurrence brain tumor, going through Cyberknife treatment & is now recovering. Hope in the next MRI my brain is clear.I'm lucky enough to have family around & attending cancer support group to draw strength from ? You are not feeling alone but you need to open your heart to receive help. I hope my history will help you get through this most difficult time.God Bless
Thank you for your reply, you inspire me! Your history is amazing and I am praying your next scan is clear! Stage 4 since 2012 is very encouraging to me thank you again for the kind words.
Enjoyabull,
Thanks for reaching out to us, we are happy to have you as part of this community. Please take a look at our website freetobreathe.org if you haven't already - lots of information waiting there (and all of it is free, of course). We just want to help.
Welcome, please keep us updated!
Thank you for everything
DenzieModeratorVolunteer
I'm a freak of nature. Seriously! My cancer responded very well, and completely to my first course of treatment. Cisplatin/etopicide with concurrent radiation. Its been 6 years and I've not yet experienced progression.
Which is not to say its been easy on me. I've had too many treatment related side effects. I've also had a second cancer diagnosed near the anniversary of the lung cancer diagnosis. After surviving stage 4 lung cancer for 4 years a stage 1 breast cancer diagnosis did not scare me.
Please know you are not alone. My friend Anita and I have met others who are on their 4th and 5th lines of treatment and surviving very well.
This is very encouraging Denzie ! Thanks for sharing! My father also has a second cancer diagnosis of multiple myeloma.
Thank you for your encouraging words.
You are very kind to mention knowing others on 4th and 5th lines of treatment because I think thats me. I am not who I used to be, my activity level is like zero but I am alive and still hopeful!
I'm caring for my husband , he's got SCLC ext. I feel very alone too. We live in Australia, in a fairly remote area.
DenzieModeratorVolunteer
Vivi, welcome to the Free to Breathe Lung Cancer Boards. You may be isolated but you are not alone.
I will be 57 years old in a week, so I can totally relate. I was 53 years old when my cancer was found 3 years ago. I was very fortunate that my cancer was found early (stage 1B) and just my chance since I was doing pre-op testing. Please realize we are all here for you during this difficult time, sending you a big hug.
You are very lucky and thank you for reaching out to me
Hi,,I'm Kim. I am also stage 4 lung....feel free to contact me...
• in reply tobrianasgranny
Hi Kim,
How long since your diagnosis?
brianasgranny• in reply to
I was diagnosed on May 17, 2012
Hi Kim how do you feel on a daily basis? How long for you? I am almost a year now and I have stopped work because I cant do very much while on these narcotic pain meds they prescribed.
I was diagnosed may 17, 2012 stage 3b that rapidly went to stage 4. It started in the top of my right lung and went all through right lung, into the left and in lymph nodes. My 1st biopsy was taken from the left side of my neck. I had a clear chest xray on Nov 28, 2011 and advanced nsclc in May 2012. I have been through radiation and every chemo that might help my cancer, none of which worked for very long. In Jan 2015 I started a clinical trial that helped for almost a year. On Dec 1 2015 I started a different trial with immunotherapy drugs. I have to say,,it is much better than the chemo was. I can no longer take pain meds since I have developed a sensitivity to them And, unfortunately I can no longer take Lyrica for the nerve damage from my botched neck surgery . But,,,,over all I am ok. I am alive and I am very grateful for that! It is amazing what you can get used to when your back is up against the wall! 
Wow you inspire me. Thats some journey. I am very frustrated right now because I just feel so sick. I basically just watch tv, read and go on Facebook. I am in a lot of pain without pain meds and they make me feel like I am in a cloud. I hope this new carboplatin and gemzar work so I can go back to feeling human.
Hi, i am a 70 year old with terminal stage iv lung cancer, have been through radiation therapy and first round of chemo, just started 2nd round of chemo it is tough because i also have a tumor ovrr both kidneys and a aneurysm.
Chemo is tough but I would imagine radiation is too? What side effects if any did you have? ....keep reading there are many people on this website living years with stage 4 lung cancer.
Had 30 rounds radiation therapy, side effects was blistering of the skin around throat and causeing throat to shrink.
Currently having trouble swallowing from the radiation therapy, first of second round of chemo that was last week i still am having problems gettin over it.
Thats sounds uncomfortable, are you able to eat?
I have learned to chew alot, i don't eat that much due to i have false teeth and i wear out eating quickly
• in reply toCollinjo1
Smoothies might help?
I feel like I am all a lone to and scared
I feel better since I joined here and I hope you feel better too. It is comforting to get to hear about people living and beating lung cancer. As for being scared this is a scary disease and I think what you are feeling is 100% normal. Everytime I have a new symptom I am scared but reading everyones posts here reminds me that I am not alone. What kind of Lung Cancer do you have and for how long?
It is very scary I am alone to
Do you have family with you?
They work all day they got family to raise
What kind of Cancer do you have and what kind of treatment? I am alone during the day and have learned to enjoy the game channel network and I love facebook and I play word games on my phone. I am curious about how you are feeling and maybe people on this board could help you if you tell us what your health situation is. I am stage 4 lung cancer.
Funny, most of my friends and family don't know how to act with me, they are scared for me, they don't know what to say to me, etc. I keep them informed of my journey and I try to keep it light, I think that helps them with the dialog. Whether they are working or not, keeping them informed by email will be beneficial to you and them. You'll be surprised.
Groups like these can also keep you from feeling alone, don't be afraid to just come on and let loose on us, we're going through similar things and can understand what you are going through.
You are not alone unless you want to be.
Hi,
I'm also battling Stage IV NSCLC - Diagnosed on 3/27/15 - Currently Stable and hoping to resume Opdivo treatments soon. I've been on a treatment break for the past several weeks, due to Low Grade Pneumonits, which is one of the side effects of this treatment. However, I am happy to be on Opdivo and despite the side effects it has worked well for me in shrinking my tumor.
I have found that support groups are very helpful to me -- and that it's been a plus to meet others who are fighting the same type of Cancer - We all can relate to one another and talk about our treatments and also learn from each other.
Nice to meet you - but sorry that you are also in this battle.
I'm have my next CT Scans coming up next weed (12/27) and the Scanexity is hitting now -- never easy and always the fear of progression.
Best wishes to you and I do HOPE you'll find the group beneficial.
~ Lisa
Lisa I am so happy to find this group. What other treatments have you been on and do you have any lymph node involvement? Thats the hard part for me my lymph nodes are so uncomfortable.
Lisa I forgot to say you inspire me and thank you for sharing. You are proof we can live with this disease even at stage 4!
Thank you. I did have some lymph nodes that lit up in my Pet Scan, but did not have pain and they are happily fine now. My recent scans still shows that I'm stable, and on in a treatment break for three more months and will rescan then. Very grateful and hoping I stay stable.
Wishing the best for you too,
Lisa
I am also 57 I was diagnosed in May 2016 with lung cancer non-small cell stage 2 had surgery on my right lung wedge was removed two months later I got another tumor in my left lung went to stage 4 also has COPD my lungs are pretty bad did CyberKnife radiation surgery now waiting for the results to see if it worked not feeling all that great and I know what you're saying about being lonely I have adult children can't talk to any of them about it they're all in denial thank God I have my mother and my sister they're awesome support and my husband takes good care of me sometimes the loneliness is just there I can relate if you need to talk I'm here or have any questions
Thank you! When it went to stage 4 where else do you have it? I have it in my lymph nodes and bones
it went to my other lung the strange thing is i don'nt have any in my lymph nodes which is a good thing they are saying that it's two different cancers but yet the same strain
All cancers are isolating but none more than lung cancer. I was Dx In 2007 - NSCLC STAGE 3a. - I had my right lung removed and 16 weeks of chemo. You will find out very quickly who you can count on. Even with people all around me it was very lonely and isolating. There are many people who feel like you do - unfortunately. But we are here and there is another forum Lung Cancer Alliance.
The people there basically held me up during the worst time of my life -people from all over the world sharing experiences and stories. Also on face book there are several lung cancer support pages. Just keep looking forward and fight as much as you can. It's a long hard journey but I know many stage 4 long time survivors - 10 plus years. So don't give up and don't give in. ❤❤❤
Thank you! God bless!
I know how lost you must feel - I was there myself but there is always hope - they had me on cisplatin - very toxic chemo - at the time I didn't know it was a drug still in its research stage but it kicked my butt every week. I was crying all the time and I was dehydrated and the thought of eating or drinking fluids made me want to throw up. I landed in the ER several times for dehydration but finally I was done and it took almost a year before I felt like me again. So my best advise is drink tons of water and flush the stuff out as much as you can. StY in these sites and just keep talking - if you build relationships here you will do ok - YOU ARE NEVER ALONE - everyone here is in the same boat - or has been there - just hang on
Karen
Thanks Karen!
Always here.
I had non small cell and small cell long cancer and had to have a lobectomy of my right lung. Then I had Cisplatin (Platinim chemo) for 4 months and then they did regular monthly CT scans for the first year. Then they went to every 6 months for the second and third year and now at 7 years cancer free I still go back to have a CT scan yearly. God has been very good to me. I feel very blessed to have made it through the lung cancer.
Enjoyabull, Lizzy-9 and others,
I have stage IV NSCLC, had mets to brain and adrenal gland, two recurrences of adrenal gland and after 5 years I'm free of active disease and in monitoring every 6 months. There is hope. If you want someone to talk to, contact Cancer Hope Network cancerhopenetwork.org or call (877) 467-3638. They can pair you up with someone with a similar history to talk to or correspond with. And as you have both found out this site and others like it are great! Don't be afraid to reach out. I would not have made it if I had not sought help. God Bless.
Hi Enjoyabull, I'm going through the same, I was diagnosed in July 2016. I have a blog in which I try to describe my Journey mycancerchronicals.com, feel free to contact me anytime if you have questions or just want to talk. I find the more I talk about it the better it makes me feel.
Tomc
Tomc@mycancerchronical.com
I couldnt open your blog. I would be interested in reading.
sorry, there's a stupid comma that hooked on to the end of the url, just delete that.mycancerchronical.com
I found it. Thank you
You are never alone with this website, i have stage iv lung cancer, have gone through radiation therapy and on second tound of chemo
Enjoyabull, I wanted to say hello to you as I have been following you only recently. I'm sure by now you have made contacts that have helped you not feel alone. It is an awful feeling to feel alone. Please know that you have friends here. Check in whenever you can. My name is Kathie. I'm 65 and have been battling small cell lung cancer for the past few years. Have had 3 recurrences since 2014. I had chemo and radiation for the first 2 occurances and am now being treated with Keytruda. So far so good. The only side effect I have is waking with a headache. I can live with that. With chemo I became very sick, weak, tired, and my appetite was not good. I put on weight and went bald two times. Hair grew back both times thank goodness. I will keep you in my prayers. Please reach out if you need to. I am disabled and home most of the time on my computer. Have a good day.
Kate93105 I feel so much better and less alone. Thank you so much for reaching out to me. I am home all of the time too and I am usually on my phone because sitting at the computer my lymph nodes in my neck start to hurt and then the pain actually goes down my right arm. I am sick, weak and tired with no appetite from chemo but at this point am hanging in there. One day at a time!
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