Positivity1022 Posted August 1, 2012 Share Posted August 1, 2012 Hi All, I am new to this site, but have been following many of your incredible journeys as caregivers and survivors. You are all such an inspiration to so many people- like me and my family. =) Our journey starts in October of 2011 when my Mom was diagnosed with sclc- limited. She went through chemo and radiation and POOF- it was gone as of April 2012. Then, on July 4 (how are these for fireworks)- my Mom took a seizure only to be rushed to the hospital to find out she had brain mets. Since then, her amazing radiologist treated her (using WBR) and the mets are almost completed depleted and we are told they should be gone come September 17 when we go back in for another scan of her brain. The doc said if there is a remnant he will use Gamma Knife. Ok great news considering, but here's where things get a bit complex... So we were able to get into Sloan Kettering and were very excited that she is able to get into a clinical trial- terrific, right? Well, the doctor wasn't exactly optimistic. She sat there and was extremely blunt, saying that this type of cancer is incurable and she hopes to keep my mom alive as long as possible. Ok, now, we know that this is not an easy battle all the way, but I have read some of your terrific/amazing stories and believe that my Mom can be here for 10 +years. Am I crazy? She is doing so great with treatments. Why couldn't the doc be more optimistic? I know she is probably one of the best in her field, but is it so much to ask for bedside manner? I'm just upset because, as you all know, this process can be awful, but I thought it could only get better going to Sloan. She left me feeling more worried about Mom than before my Aunts and I got there! Her other doctors in jersey were so much more optimistic. I do know though that they say the best doctors are usually the most blunt, but this was downright painful to listen to. Are there any long term extensive small cell lunger cancer survivors? We could really really use your stories right now. Mom looked so scared and so upset and my Mom is a really upbeat/funny woman. She is still at Sloan awaiting to get her full body scan done just blocks away. She is such a good mommy and insisted I come back to work, that my Aunt's and here will "have a tea party" while they await the scan. As as you can, I am doing very little work this afternoon. I cannot wait to go back to Sloan to be with them. The good part of this also is that Sloan was able to move forward with the scans today, instead of us waiting for our docs to do it in mid August. Fingers crossed it has not spread anywhere else. So hopefully. Please, though, anyone that can shed some light on some long term extensive survivors. We really need word on these stories right now. Best to you all, A caring daughter Quote Link to comment Share on other sites More sharing options...
eric byrne Posted August 2, 2012 Share Posted August 2, 2012 Hi, Welcome to LCSC,I am so sorry to read of your Mums dx,there are many wonderful LC survivors here that will share their experiences with you and help lighten the burden you are carrying. Nearly 4 years have passed since my dx,your post reminds me of the anxieties that both me my family and friends went through at the time.I had the feeling that my world had come crashing down on me,I had no future,no light at the end of tunnel,comforting words from all around me could not dispel the thoughts that I had,that this disease was going to kill me and in the not too distant future. As my treatment plan was introduced to me,chemo and possibly surgery if the chemo was successful in reducing my tumour to a operable size,now I started to worry,will the chemo make me extremely nauseous?,will my hair fall out?,(dont mind the gray ones) will my surgery be extremely painful and leave me a breathless invalid?,what if the surgery is unsuccessful?,you name it,I probably worried about that too. Well I promise you for all my worries,I sailed through all my treatments,nothing of my dark imaginings came even close to being realised.I have since my operation in January 2009 no further treatments. I still struggled mentally with my cancer,now, I did my research,I devoured all the books in my library on cancer,looking for that elusive good news that I can survive this disease,very often I was disapointed,the stats were'nt good either,then one day I picked up a newspaper,in it, an article on a guy who was setting up a lung cancer support group in a hospital near to my home.I read on, this guy was amazing, he was all I hoped I would find one day-a real life long term survivor.His name is Robert Lowe,dxd with SCLC in 1993,given two months by his medical team to live,he asks for the best option for a treatment that can extend his life,he receives a chemo regime that leaves him so ill,that his family was called to his bedside on more than one occassion as his doc did'nt think Robert would see the next day,well unbelievably,to his doctors Robert makes a full recovery,in 2007 he is then dxd with NSCLC has chemo and surgery. I have just got to meet this guy,and I did,I joined his support group,by co-incidence Robert 10 years my senior was born and brought up in the same district in Glasgow as myself,we went to the same schools,even shared the same teachers,we had so much in common not forgetting a Glasgow sense of humour,Robert now 72,will celebrate next year his twentyth LC anniversary.It is of course my intention to follow in Roberts footsteps.LOL. I appreciate not every LC survivor will be a Robert Lowe,but I have since discovered there are many others who are long term survivors,so there is hope for everyone however bleak things may initially seem.Please pass onto your Mum my best wishes and that she has every success with her ongoing treatments.Things do with the passage of time improve,take one day at a time,I know it sounds a bit trite,but it does hold true.A saying I heard recently rung true with me "Worry is like sitting in a rocking chair,it gives you something to do,but you dont get anywhere".So for all the many hours I had worrying going through my treatments they were a waste of time,everything turned out well for me.God Bless. Quote Link to comment Share on other sites More sharing options...
beatlemike Posted August 2, 2012 Share Posted August 2, 2012 Hi caring daughter and welcome. First off I would reccommend to go to the sclc forum here and read Don's story. For heavens sake dont lose hope. There are many here that thought their time was limited and are still here many years later. My thoughts and prayers are with you and your mother at this difficult time. May God bless! Quote Link to comment Share on other sites More sharing options...
Positivity1022 Posted August 3, 2012 Author Share Posted August 3, 2012 Hi to you both, Thank you so much for your words of care and inspiration! Eric, your story is truly amazing and so is that of your friend, Robert Lowe. Just unbelievable. What testaments to defying the odds and having the heart to keep on living life to the absolute fullest. Thank you so much for sending me these stories. I feel as though they are virtual hugs. I have a great update!... Mom's scans look clear according to the doctor! Well, aside from a few blood clots- yikes- but thankfully, after daily injections for 3 weeks these should be taken care of. Being the doc did us a favor and looked over the scans the same day, she is just reconfirming that all is clear, but she was quite pleased with them last night. So we'll head back in a few weeks to make sure the blood clots are gone and are on the 8 week plan for now. Every 8 weeks she'll be checked to make sure nothing is showing up- hoooraaaay. Or maybe I should say NED (no evidence of disease?) I'm still learning the terminology. But I must say, because of this site I have learned an awful lot about all of this. So much so that the doctor must have noticed me nodding at the right moments and finally looked over and said- "someone's been doing her research." This site is just amazing. So all is looking rosy right now and Mom is her incredibly upbeat and witty self. Quote Link to comment Share on other sites More sharing options...
Positivity1022 Posted August 3, 2012 Author Share Posted August 3, 2012 P.S. Eric, I really like your quote. And you are right, no sense in worrying. I am so happy that all is going so well for you. I hide my worrying pretty well from my family, like my sister and my father, but my poor husband is getting the brunt of it. God bless him! Quote Link to comment Share on other sites More sharing options...
chloesmom Posted August 3, 2012 Share Posted August 3, 2012 Hi there Positivity! Although you are relatively new to the lung cancer world, you've already learned that it's an up and down type of lifestyle. I'm happy that you got good news for your mom. Here's hoping it keeps going in that direction! Cindy Quote Link to comment Share on other sites More sharing options...
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