ljdub

Coming up on 8 years since diagnosis and still NED....seeing Jamie's post on fb reminded me that others need to see stories of survival to give hope, so here I am after taking a very long break. I have had no treatment since completing it in August 2004. Today I live with COPD which required adapting my lifetstyle, but it's a blessing to still be here to bounce my new grandson on my knee!

I've taken a very long break since I last visited this site....various reasons, but a post on fb today reminded me I needed to check in and share my story since so many were seeming to need to hear stories of hope. So....here I am, still here nearly 8 years after diagnosis, and though I am living with COPD and having to adjust my lifestyle to that reality, it's still a blessing that I'm still here to be able to bounce my new grandson on my knee

I keep seeing from new posters that they come to this forum for hope and maybe some cheering up when they are feeling that their worlds have spun out of control, so I'm posting my story so others can see it IS possible to survive this disease. The basics of my story are in my signature, but details are: I had no symptoms whatsoever - my cancer was found entirely by accident when I got a respiratory infection (had gotten these easily all my life) and my doc ordered a chest x-ray. Suspicious spot showed up on the upper right lobe, looked about an inch or so on the films. Had a cat scan and then a needle biopsy to confirm - NSCLC adenocarcinoma. Ordered me to surgeon immediately, who got my hospital records and asked me as we looked at them why I hadn't done anything about the "spot" exactly one year before when I had a previous respiratory infection and chest xray. My reply - Nobody told me there was a problem. In fact, my doc's office had missed it entirely and called to say all my tests were fine, I just had your standard resp infection. Wow. What do you do with THAT kind of information, when you know something might have been caught a whole year earlier? It sure messes with your head.... would it have made a difference? Who can know? Went for the mediastinoscopy to check for lymph node involvement - none indicated by that procedure, so scheduled surgery to remove upper right lobe. This was looking fairly ok, maybe early stage and no treatment other than surgery might be needed? Bummer. Once inside, had to remove middle right lobe, as well as the top, plus a bunch of ugly looking lymph nodes, but had to stop messing with one sitting right on top of my pulmonary artery, since if that were nicked, end of story..... so, now radiation and chemo were definitely in my future and it seemed I was being re-staged every time I turned around, and getting progessively worse news each time. Decided since I had world class Mayo Clinic in my backyard, so to speak (2 hours south in Phx area) I'd put myself in their hands. My oncologist there was wonderful beyond description. Suggestion: make sure you really like and trust your oncologist - it makes SUCH a difference as you or your loved one goes through this awful time. Scheduled radiation 5 days a week and chemo once a week, for 6 weeks. I was SO lucky - my blood work was phenomenal, white counts stayed virtually normal until the very last treatment, when I had my first neulasta treatment. I lost my hair, but the wig was better than my own hair, or at least easier! Very little nausea at all - the worst part of chemo for me was sitting there for several hours while it dripped in! Radiation was more of a challenge for me. They were targeting the very center of my chest, that pulmonary window, and my esophagus got terribly burned. After a while I couldn't eat much of anything - it simply hurt too much. They did give me a magic "potion" to help with this - it did numb the esophagus, but as soon as I ate or drank anything, that effect was erased. Needless to say, appetite went WAY down, probably as a result of the chemo together with radiation pain. Eventually I couldn't even drink water without crying in pain, and that's when I decided it was enough for me. I completed 27 of the 30 scheduled radiation treatments, and though they would have preferred me to complete the last 3, they respected my decision. I was down 40 pounds by that time, but then, I could afford to lose it! So, that completed treatment and we came home to begin regular CAT and PET scans, at first every 3 months, then every 4 - 5, and now as I begin the last year before reaching the 5 year all clear mark, we're just doing a chest xray every 6 months. At my last visit, my oncologist was jubilant - he said the best advice he could give me was to wear my seatbelt, since everything else was doing so great! I should add that my original oncologist, who was with me through all of treatment and beyond, left to do research into this disease, which though I hated to lose him as my doc, I was so glad someone of his caliber would be doing. I didn't care for my next assigned onc, so I requested another, and HIM, I love! Again, having the right doc makes all the difference in your attitude, so keep looking until you find the right one for you! So, on this roller coaster ride I began by thinking we might just cut out the "bad" parts and be done with it, 1a maybe! but as most of us learn, it's rarely quite that easy with this disease.....and I was restaged at every step until it ended up 3a or possibly 3b - they were never entirely sure if it had crossed the window to the left side so we just blasted away and hoped, and so far, it's done the trick. I know how very lucky I am - and I also know I had an enormous support system, with so many prayers and good thoughts being sent on my behalf that it just felt like I "floated" through it on a pillow of good vibrations. I also didn't focus on it - I viewed it as a temporary detour on my life road as much as was possible, and I think by not making it the complete focus of my thoughts, I didn't give it power, if that makes any sense. Not denial, since you can't deny it when you're going through this, but refusing to give it any more power over me or my thoughts than absolutely necessary. I also had an incredible support in my husband, who kept things as normal for me as possible, God bless him. So... though 4 years ago I had to face the possibility that I might not live to see my daughter find love, have a family, etc., now I can say I was there to walk her down the aisle 18 months ago, and now she is 4 months pregnant with my first grandchild, and I can only be so grateful that I'm here to share these milestones. I hope that others find some strength in reading this story, and that there will be many others blessed as I have been to come through this battle this far and still be here, living full lives and sharing time with their loved ones, which is all that really matters in the end, isn't it? I always welcome questions or any way I might be able to share something that might help, so don't hesitate to email me if there's some way I can assist or just to listen. Blessings to you,

Thanks so much for the so warm welcome back - this board has always been full of the most positive wonderful people! I wasn't sure about returning, but you all have made it clear it was the right decision. I'm delighted to know my story CAN give some hope to others at all different stages of fighting the beast. I did find my old login info with the specifics of my journey, so I pasted it into my signature. I couldn't remember the details, which I took as a sign of either putting it behind me and thinking about good things, or evidence of chemo brain, or both! But having located it, I added it, so others can see if it tracks with their own experiences. Thanks again to you all - it's good to be back - you're wonderful folks! I'll be posting whenever I can, and sending good thoughts always to all those involved in this fight!

See signature - think staging eventually ended up 3a/b with lymph node involvement called a halt to radiation after 27 of 30 planned - burned esophagus chemo was carboplatin/taxol - 6 rounds 1 x weekly - very few issues - counts stayed great, very little nausea, energy good live in AZ, USA Holler if any other info I can share.....

I'm a returning "poster" after taking a 3 year hiatus. I visited this site a lot for the first year or so after diagnosis and treatment, but after my cancer "buddy" -(longtimers from LCSC will remember Beth from VA), lost her battle while I continued doing so well, I had either survivors guilt or just couldn't take bad news for awhile. I let it go too long before returning to check in on others whose journeys I followed, though often quietly. It was too easy to put it in the past, maybe. A friend's recent diagnosis brought me up short and though I have tried to help others facing cancer that I know personally, her current battle reminded me that I owe it not only to her, but to others I may NOT know personally, to say it IS possible to beat back the beast. I got myself reactivated and am here just to say that after 4 years NED for me, maybe someone will read this and feel a bit of hope, anyway. I would include my staging info but it seemed to change on a regular basis as I went through treatment. I can tell you that yes, I did have lymph node involvement including some in the "window" in the center, and one cancerous node sitting right on the pulmonary artery that surgically was too risky to attempt, thus the radiation. I tolerated 27of the 30 treatments, and it apparently did the trick, along with the weekly chemo for 6 weeks. All scans since have been completely clear - my oncologist is jubilant! I don't know if there is a "5 year all clear" you're considered "cured" like you hear about with other types of cancer - maybe someone out there can tell me that, but I am doing scans only every 6 months now and don't know how long he plans to continue that. There comes a point where continuing to radiate the chest becomes possibly not worth the risk, I would think. Anyhow, glad to be back - glad to see many familiar names are still kicking, and sorry to see so many have had to find this site, but still oh so grateful that it's here for people to share and gain some hope and shared experiences. I'm sorry it took me so long......

Hi Lorna, I really don't have answers for you, since my experience has been so different from that of your husband, but I at least wanted to say I'm glad you found this site. You will find so much support and empathy here, from so many others going through similar things, and it helps just knowing you're not alone. I'm sure someone with more suggestions than I have will post a reply very soon, but I just wanted to say hello and welcome, though we all look forward to the day when we don't have to welcome anyone here ever again, because lung cancer will be a thing of the past

My sincere sympathy on the loss of your father. My daughter is 28 and I often think about what a devastating thing it would be for her to lose a parent at this age. I can tell you and your dad shared a wonderful relationship and I hope that gives you some peace during this difficult time. I'm sending prayers to you and your family.

Hi Beth, I was relieved to see you back on here...I can imagine you can't possibly reply to all those who are posting and pming you - there are so many people concerned and caring for you! Hopefully with that many sending you good thoughts you will bounce back and beat that nasty throat stuff but good! Still sending prayers and healing thoughts to you constantly...that Alimta will be the ticket to your beating this once and for all!

I'm late, too, but let me add my congratulations and happy dance to everyone else's! This is truly wonderful news and I'm so happy for you!

Much of the time I lurk about and commiserate quietly or smile in appreciation of the humor and support from so many on this board, but I've noticed how supportive and positive you always are for so many, so I wanted to add my best wishes and prayers for Lucie, and for you, too. You are always so wonderful and compassionate to others, and I send the same to you.

Don, I''m adding my hopes and prayers for surgery to be an option for you, and will be waiting to hear the updates as you get more info.

Oh Beth, I just don't know what to say. All the way through it seems like you've had to battle so much harder than others, only to be hit harder again. Nothing about this disease is fair, but somehow it seems even more unfair for you. I wish there were something I could do to help -you know I think very highly of my onc at the Mayo Clinic and certainly would recommend their facility. I know they have one in Florida and the original one in Minnesota which I suppose are closer for you, but others are recommending excellent facilities, too. It will be hard to even know how to make those decisions but so many on this board are here to offer whatever help we can, and you know that includes me. If there is ANYTHING in the way of research or help in whatever way you need, PLEASE don't hesitate for a second to ask for it. We will all do whatever we can for you. I'm praying so hard for you, my friend.

Hello friend! I was really hoping to hear better news, even gall bladder or SOMETHING they could pin down to at least identify what the cause of your pain is. I hate it when they say they give up - it makes you feel like they think it's all in your head or something similarly dumb Is it your pcp ordering the Cat scan Thursday or something your onc wants? I hope your insurance company is still taking care of you - it scares me to read a post like the one on here who said the ins company isn't wanting to pay for her mom's hospitalization because they didn't find out what was wrong. Is that CRAZY or what? Because the medical experts can't find out what's wrong they want the patient to pay for it? It just leaves you shaking your head... Anyhow, I hope you're finding some relief from the pain, and I agree with others who have said don't give up - MAKE them get to the bottom of it and find out what's causing pain strong enough to require a pain pill. Sending you healing thoughts....

I'm adding my sincere sympathy on the loss of your beloved dad. May the healing thoughts that so many are sending to you help in some small way during this difficult time.

My sister booked a celebratory 4 day Mexican cruise for her, myself and my daughter that was about 4 weeks out from the date I finished chemo and radiation. It DID give me something to look forward to, and I enjoyed it a lot, BUT, I'm glad we took lots of photos, because I was still not "back to normal" and I frankly have kind of blurry memories of much of it. And, my stamina was still not back much at that point. In retrospect I think it would have been better if we'd waited a little longer after I completed treatment and I would have been able to participate (& remember) a lot more! So I'd say definitely take the trip if at all possible - it was a tremendous "reward" for completing treatment! Best wishes - I hope you all have a wonderful time

I know i'm late with this, but I, too, am sending all the positive thoughts and prayers for good test results - it's so hard to wait but with all our positive warm and healing thoughts going into the universe you can count on tons of support from everyone here.

I will be waiting with bated breath to hear when you have results (though I KNOW they will be great!) In the meantime, I hope you have a terrific weekend - you're certainly due one. How much snow did you end up with?

I was thinking a pina colada and imagining a sunny beach somewhere, but now I'm thinking the Orgasma sounds like just the ticket - yummmm!

Honestly Beth, things DO seem to have a way of happening to you and have right along, but you always completely amaze me by your ability to laugh and be funny in the face of whatever stuff is being thrown at you. I have SO much admiration for your way of handling whatever setbacks come your way, but I truly do feel you are WAY overdue for something good, so I'm putting my money on a clear MRI. If it takes getting there in a snowstorm to get a clear MRI, I'll wish that for you! I'll be sending good thoughts to you, my special buddy - just be careful and get there safe!

WOW! You sound as stunned as I was to read this wonderful news! I had no idea there could be such incredible results and I am so HAPPY for you! Congratulations and I add my happy dance to all the others for you!

Hi MaryAnne, I also had the carbo/taxol regime but mine was once a week for six weeks. So they did a new IV each time I went in. It took about 4-5 hours the first time for them to first put in the drugs they use to prevent nausea, etc. and then the chemo drugs, but I tolerated it well so they were able to speed up the infusion. After the first time it usually only took about 3 hours total. I hope it all goes well!

I will definitely add my prayers to so many others that your mom will see spectacular results and will soon begin feeling so much better. You'll be in my prayers, too, as someone who is such a wonderful support for her.

I mostly lurk about and commiserate in my heart when I read about the struggles of so many on this board, and celebrate the good news when that happens, as well. I try to offer helpful info when I can, which doesn't seem to happen nearly often enough. But, I wanted to share a bit of good news. Went to Mayo yesterday for a full body scan and everything is clear - I was pronounced NED, sweet music to our ears! I'm sharing this great news hoping that it will be a bit of good news and might offer others hope. We all need to hear about the good things and share those, too, and I know how blessed I am by the support I've received from many here. (especially you, Beth!) So, my thanks to all of you, and I hope and pray for good things for all of you, as well!

As you can see from my profile, I am 9 months out from surgery and still don't have my normal voice back. I guess I'm thinking I never will at this point. Mine also got deeper, and raspy a lot, especially the more talking that I do. Unfortunately I have to speak in front of large groups fairly regularly, and even with a glass of water by me constantly I find my voice getting more and more raspy or even giving out. My surgery also was only for the lungs rather than near the vocal chords, except I did have a mediastinoscopy to determine involvement of the lymph nodes in the mediastinum/hilar area. The raspiness didn't seem as bad after that smaller surgery as it did after the larger one when they removed the lobes, but maybe it was cumulative? I have been putting it down to the tubes they put down your throat during surgery and just figured maybe for some percentage of patients the irritation/damage to the vocal chords is permanent. I could be way off base, but that was my thought process. I see my oncologist Tues for the 2nd scan since I finished treatment and I've felt pretty normal for a while now after finishing chemo and radiation, but I plan to ask him about the voice, hot flashes, achy joints and other assorted things that seem new since all of this began! Also, I can tell you, I stayed on the fentanyl patch for months after finishing treatment - it was so effective and didn't make me sick or loopy like vicodin or percoset, but it allowed me to get back to work and even feel pretty human during the long healing process. I thought it was a miracle how much better it would make me feel when i was still recovering from all the assaults on my body. Hope all this helps answer a couple of your questions - other answers will follow if I get any! Best wishes to Joel and to you!