JocelynM Posted January 8, 2013 Share Posted January 8, 2013 My 5th year after my stage 3b lung cancer diagnosis. I had my annual pet scan yesterday and there is no evidence of disease. (The good news.) But I still have to take the Tarceva. (The bad news) Well, it DID save my life. I remember receiving the diagnosis and wondering if I would see another winter. I was numb. 5 years ago the statistics said only 1% made it 5 years. I learned not to believe everything I saw on the internet nor everything I read in books. Medical postings and literature become outdated very quickly and all one really does is scare the bejesus out of ones self! My doctor and I hoped I was cured after radiation/chemo and then surgery but, alas, 2 years later it was back in the lymph nodes in my neck. Radiation and Tarceva. 3 years and one dead thyroid later I'm still standing. (Well - sitting. Bad head cold) My cancer diagnosis made my days seem more valuable and the colors around me brighter and deeper. The world took on new dimensions. I learned to accept my friends for who they were and make allowances for how they individually reacted to my disease - even when they ran and hid. My connections to family & friends are so much closer. I have wonderful friends who are also walking the cancer path who I never would have known. 5 years out. Cancer is the new normal but it took years to accept it. I'm still dealing with Tarceva side effects & a new diagnosis of Crohn's Disease (which I think is from the Tarceva). I go to my job every day. I try to help others. I do my yoga and my meditating. I try to eat right and above all practice gratitude in my daily life. I live a simple life. I LIVE!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
michellep Posted January 8, 2013 Share Posted January 8, 2013 Congratulations on the NED You're a strong woman and an inspiration to all survivors! Here's hoping you will continue with the NED for many years to come Quote Link to comment Share on other sites More sharing options...
JocelynM Posted January 8, 2013 Author Share Posted January 8, 2013 Thank you! I haven't been here for sometime. I'm home sick with a bad cold and thought I would look in. Quote Link to comment Share on other sites More sharing options...
michellep Posted January 8, 2013 Share Posted January 8, 2013 You said that you think the Crohn's is caused from the Tarcevea? What other side effects did you get? My husband took Tarceva and only got the famous rash. Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 8, 2013 Share Posted January 8, 2013 I think Deb only had the rash also... Congrats on the 5 year.. try Wonton soup to help with the cold from a local Chinese restaurant.. Get well soon and thank you for popping in today ... Quote Link to comment Share on other sites More sharing options...
JocelynM Posted January 8, 2013 Author Share Posted January 8, 2013 I have lots of dry skin and hair issues. I had the rash in the beginning. Someone here posted that a day or 2 without the pill seemed to help. Indeed, 2 days off and now I seldom see any rash. Jackie Quote Link to comment Share on other sites More sharing options...
JocelynM Posted January 8, 2013 Author Share Posted January 8, 2013 I'm hoping some curried chicken will lnock my cold on it's butt. Tnx, Randy - perhaps I'll have that for lumch tomorrow! Jackie Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 10, 2013 Share Posted January 10, 2013 used to work wonder for my senior parents when they got sick... Quote Link to comment Share on other sites More sharing options...
dianew Posted January 10, 2013 Share Posted January 10, 2013 I am also 3b, so love to see posts like this. Thanks for letting us know how well you are doing. Quote Link to comment Share on other sites More sharing options...
MaryTD777 Posted January 12, 2013 Share Posted January 12, 2013 YAY! Happy 5 years!Looking for good news posts is what brought me here... mostly. Thanks for posting Quote Link to comment Share on other sites More sharing options...
JocelynM Posted January 15, 2013 Author Share Posted January 15, 2013 Thank you so much, Mary. It means a great deal to me that my post can make someone happy. Hope is a wonderful thing! Jackie Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 15, 2013 Share Posted January 15, 2013 our last line reminds me of a Dean Carl poem, end of poem, "I will die of cancer but not today, not today!!!" Quote Link to comment Share on other sites More sharing options...
shineladysue Posted January 16, 2013 Share Posted January 16, 2013 Such a wonderfully inspiring update , Jackie. Thanks for sharing so we can share in your good news and so your story can serve to give others hope. Hope you are feeling better now.. Got some kind of little bug myself... stuff's going around. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Janet B Posted January 16, 2013 Share Posted January 16, 2013 I LOVE your story, thank you so much for sharing it! It sounds like you have found the way to get past the darkness of this disease and find the blessings in life. Congratulations on your 5 year anniversary!!! What hope that gives so many others! I am also on Tarceva, I have been on it for 5 years, we could share some war stories, I am sure! Peace Janet Quote Link to comment Share on other sites More sharing options...
JocelynM Posted January 16, 2013 Author Share Posted January 16, 2013 Thank ypu, Sue and Janet! We should compare Tarceva stories. My biggest struggle is dry skin. I use mostly Cetaphil products but it isn't 100% satisfactory. Also have lots of digestive issues. Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 17, 2013 Share Posted January 17, 2013 Jocelyn have you tried the Nivea with the white cap? i think it was? that was what Deb used to use .. Quote Link to comment Share on other sites More sharing options...
eric byrne Posted January 17, 2013 Share Posted January 17, 2013 Hi Jocelyn, Sorry about being late to congratulate you on year 5 years of survivorship.I really dont have observations to make regarding your treatments,our experiences have been quite different,wishing you many more years of survivorship.Thanks for sharing your good news. Quote Link to comment Share on other sites More sharing options...
Janet B Posted January 17, 2013 Share Posted January 17, 2013 Jocelyn - I have an onco-dermatologist at my cancer center who recommends Cetaphil also, so that is what I use. It has made a big difference, my skin is still flaky (embarrassing when trying on dark clothes in a store!)., but so much better. She has me using Dove products in my hair as my scalp was quite bad for some time. I have just accepted the diarrhea as the "new norm". I do take Imodium if I am going to be out and about. Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted January 20, 2013 Share Posted January 20, 2013 Congrats on 5 years, Jackie! Quote Link to comment Share on other sites More sharing options...
manningfour Posted April 9, 2013 Share Posted April 9, 2013 Im a very healthy non smoker and was told Thursday after having a 2cc mass removed from my lung......"Judy; Its cancer!" WHAT!!! I really thought I was still sleeping..... Now just waiting pathologist report to come back for plan of action. They are not sure exactly what type (which confusses me) Just get it OUT!!!!!.... JocelynM; its stories like yours I need to hear. To show that I need to fight and stay strong. You are an inspiration to me. It will help with the wait this week for "the Call" to keep you in my thoughts that no matter I CAN AN WILL win this battle!!!! MUCH Love, Judy Manning mommy to Jace 8 and mommy to husband 47 Quote Link to comment Share on other sites More sharing options...
RandyW Posted April 9, 2013 Share Posted April 9, 2013 there are 2 primary kinds of Lung cancer Small cell carcinoma and adenocarcinoma which is the most common kind. this is good because more research and more treatments available for Adenocarcinoma then Small cell... Quote Link to comment Share on other sites More sharing options...
JocelynM Posted April 19, 2013 Author Share Posted April 19, 2013 Dear Judy, I know how afraid and bewildered you must be feeling. Like you, I poured thru personal stories looking for hope. I found it here. I will say that, for me, knowledge was a path to acceptance and understanding. Sift carefully on the internet- there is much outdated info out there. Survival has increased logarithmically and there are new treatments almost every day! Best wishes and hugs to you. You sound strong and positive and that is what you really need! Jackie Quote Link to comment Share on other sites More sharing options...
MaryTD777 Posted April 20, 2013 Share Posted April 20, 2013 Jackie said: Survival has increased logarithmically and there are new treatments almost every day! WOW! Gotta love it when the GOOD news is as hard to pronounce as the bad news! LOL!! Sorry, I have no excuse, my sense of humor has ALWAYS been warped! I remember actually practicing saying mediastinoscopy on my 2nd visit to Fox Chase, just 2 days after the first visit. They warned me that each new person I met pre-op would ask me what surgery I was having. The last time I was asked was the 1st time I nailed it HAH! Judy, I hope they get all your questions answered ASAP and that it is the best possible news they can give you. hugs, Mary Quote Link to comment Share on other sites More sharing options...
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