judyb75 Posted July 10, 2019 Share Posted July 10, 2019 Hi, My name is Judy and i just joined the forums here. I also just got the results of my tests, cat scan, pet scan and biopsy on July 2, which resulted in a diagnosis of sclc and i'm not sure what stage yet. I just had my first consultation yesterday and the doctor ordered chemo and immuno therapy today. Not sure when it will start, as it has to be approved by my insurance first. In looking for answers regarding small cell lung cancer, i ran across this forum and decided to join. Hoping to give and get answers going through this journey. Believing knowledge is power. I sincerely wish you all the best. God Bless Link to comment Share on other sites More sharing options...
Steff Posted July 10, 2019 Share Posted July 10, 2019 Welcome Judy, I am glad you found the forums...they are a big help and great source of information for those navigating the world of lung cancer. My mom was on chemo and immunotherapy for nearly 1 year with her non-small cell lung cancer. It was her 2nd bout of dealing with it and did the trick for her - she's had no evidence of active disease for a year now. You will likely be on a different immunotherapy than my mom because of the different type of lung cancer - she was on Keytruda and took Alimta + Carbo for her chemotherapies. You will likely receive different chemo's too. There are several folks who are active on the forums who are battling SCLC that you will hopefully hear from as well. If you haven't checked out the main LUNGevity website, you may want to...there are a lot of tips and great information for those going through the diagnosis stage. Take Care, Steff Link to comment Share on other sites More sharing options...
judyb75 Posted July 10, 2019 Author Share Posted July 10, 2019 Thank you so much Steff. Yes i am glad i found you guys as well. A lot of caring and sharing of great information! I am, as i know you are, so happy to hear about the outcome for your Mom...that's excellent news! I pray that it continues to be good news for you both. Yep i have been told my chemo therapy will be carboplatin instead of cisplatin (because of my age 75) and i believe it was etoposide. Immuno will be tencentriq. My oncologist told me that it will be in combination for the first 4 cycles and after that just immuno. Radiation later if they feel it will be beneficial. They cannot do chemo/radiation therapy to begin with, which he said was best, because of the nodules being in the upper and lower areas of my left lung. Not in the radiation "safe zone". Thank you for the advice of checking out the main website, i will do that. I have been looking around at the different forums. I'm just happy to find a site that has so much information regarding sclc as it seems to be more difficult to find than others. Maybe things are getting much better for sclc treatments/survivors and hence more of them popping up. That's awesome news, as well! Again thank you and enjoy your day! Judy Link to comment Share on other sites More sharing options...
Donna G Posted July 10, 2019 Share Posted July 10, 2019 Hi Judy, Welcome. I did not have SCLC but from local lung cancer support group and also here I know many with that diagnosis. I also know several who have survived of 15 years after getting treatments, Praying you also respond well . Keep us posted on how you are doing. Donna G Link to comment Share on other sites More sharing options...
judyb75 Posted July 10, 2019 Author Share Posted July 10, 2019 Hi Donna, THANK YOU for the welcome AND the GREAT NEWS! As you know it's always great to hear such encouraging experiences. When i read your post all i could do was go YAY and smile...thank you! Breathed a deep sigh of relief to hear that several had fought the battle and won and for so long. Congrats to you and all the rest of the people that fought the good fight and won! I wish that for all of us... Oh sure, i know that may not be the case for me but by golly i intend to give it my best shot and then some! Thank you for your prayers and i will indeed update my status as it happens. God Bless... Link to comment Share on other sites More sharing options...
LouT Posted July 10, 2019 Share Posted July 10, 2019 Hello Judy, I was diagnosed with NSCLC and had a lobectomy in May of this year so while I can't help you regarding small cell (as others can) I just wanted to welcome you to the forum and let you know that I'm sorry you need to be here. Waiting for anything (tests, diagnosis and approvals) regarding this disease is a torturous time that we've all gone through so when we see someone else go through it we feel your pain. You'll be hearing from others who have had treatments similar to yours so I believe you'll be hearing some powerful (and hopeful) stories here and please feel free to ask any questions you may have as you won't have to go through this journey alone. The people on this forum have become a second family to me and helped me through so much. I believe they'll do the same for you. Finally, I'll keep you in my thoughts and prayers. Lou Link to comment Share on other sites More sharing options...
judyb75 Posted July 10, 2019 Author Share Posted July 10, 2019 Hi Lou and thank you so much for your kind words of support. I too am sorry that you and all the others have a reason to be here, but i am glad to see so many still doing well and willing and able to support others. It's encouraging to see the kindness of so many. Thank you for your thoughts and prayers...i will be doing the same. One can't have too many prayers! Again, thank you and God Bless. Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 11, 2019 Share Posted July 11, 2019 Hi Judy- A warm welcome to you! I have ALK Positive NSCLC, diagnosed last September. You are not alone. The type of LC cancer is of less importance, here we have the shared experience of tests, more tests, waiting, more waiting, treatment and settling into a new life. Right now the world is upside down and inside out. Totally confusing period on an emotional roller coaster ride no one ever wants to take. Once treatment gets underway, the good days will come. There have been so many advances in SCLC, with lots more coming. Faith, hope and love will carry you through the day. Glad you found us. Michelle Link to comment Share on other sites More sharing options...
Terri L Posted July 11, 2019 Share Posted July 11, 2019 Hi Judy! I'm a newbie also. It took 4 months to actually get my first treatment, as they seemed to be in shock I even had cancer. Testing and mapping took awhile once I got to the oncologist. So happy they are jumping on yours so fast. SCLC is getting lots of attention now, so just hang in there. Mine is NSCLC but just as scary to me, and the people on this forum are just excellent. I feel like I have friends and we are just conspiring to kick butt with this awful disease. I am sending a prayer up as I type this. Keep us in touch. Link to comment Share on other sites More sharing options...
judyb75 Posted July 11, 2019 Author Share Posted July 11, 2019 Hi Michelle, Thank you, so much, for your warm welcome! Yep you are absolutely right with your description of roller coaster and world upside down, WHEW! Sometimes i have to make myself just STOP and take a deep breath and do something, anything to relax and settle down a bit. But i think i'm handling it pretty good...so far. Ordered myself a wig and a head covering for when i do lose my hair and thanking God for all the resources and caring people i am discovering on this new and wow totally unexpected turn of events in my life. All of you here are the best! Glad i found you. Oh yes... Faith, Hope and Love...all hugely important. Thanks for everything...and know that i wish you the very best in your journey. God Bless... Link to comment Share on other sites More sharing options...
judyb75 Posted July 11, 2019 Author Share Posted July 11, 2019 Hey Terri L!! Oh yes i understand cancer, of any kind is a life changing event! I just went through this with my younger Sis two Februarys ago and thank God she is still doing well! I'm so happy to see the positive thinking from you and the rest of people on here. To say it's awesome, is putting it mildly. What a great group of people to find! It doesn't feel like they got to me very fast, as the two nodules on my left lung were actually spotted by chest x-ray April 25, 2019. I never thought when first posting, but i think my headline is misleading. I acutally got the results of all the tests on July 2, 2019. But i am, also, discovering that there is a lot involved in getting to the actual treatment. They are supposed to call me any time to schedule a Brain MRI to make sure it hasn't spread there. Being claustrophobic, i have to take a dang pill to get in that tube. Not looking forward to it but doc says that it is necessary. Still nothing regarding my chemo/immuno therapy starting but soon i hope! I like your description about all of us kicking butt...here's to that!! Thank you for the prayer(s) and i will be doing the same for you. God Bless... Link to comment Share on other sites More sharing options...
Terri L Posted July 11, 2019 Share Posted July 11, 2019 I just couldn't do that MRI the first time around. Terrible claustrophobia. The pill is Xanax basically. They also had my husband put on a gown and slippers and he rubbed my foot the whole time I was in there. To top it off they had some kind of something on the helmet they put across my face and it was a picture of a hammock on the beach. It became no problem and we skated right through it. Just ask them! And don't forget this. The nurse that lives next door to me looked me straight in the eyes and said "Terri, it won't hurt you, it won't kill you, and they need these results." Still, I had to go the other route though. Link to comment Share on other sites More sharing options...
judyb75 Posted July 12, 2019 Author Share Posted July 12, 2019 Oh my gosh thank you so much for that, Terri! Yeah the doctor prescribed Lorazepam for me but it's good to know that if you ask they have other options to help you through it. I don't have anybody to rub my foot but i can certainly find out about the other options. Thanks again! Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 12, 2019 Share Posted July 12, 2019 I get 5mg of Valium for all the MRIs. At least they let me pick the music! Link to comment Share on other sites More sharing options...
Cindi444 Posted July 28, 2019 Share Posted July 28, 2019 I was diagnosed with SCLC, Stage 4 in June 2018. I was treated with Carboplatin andvEtoposide. I responded really well and was never sick from the chemo. Tumors reappeared in Dec 2018 and I had one treatment of Opdivo and Yervoy and am currently in remission with no tumors! I did have some horrible side effects from Yervoy but it’s worth it! Don’t get discouraged. SCLC is getting more attention and the survival rates are increasing. Attitude is very important. Good luck with your journey. Link to comment Share on other sites More sharing options...
judyb75 Posted July 28, 2019 Author Share Posted July 28, 2019 29 minutes ago, Cindi444 said: I was diagnosed with SCLC, Stage 4 in June 2018. I was treated with Carboplatin andvEtoposide. I responded really well and was never sick from the chemo. Tumors reappeared in Dec 2018 and I had one treatment of Opdivo and Yervoy and am currently in remission with no tumors! I did have some horrible side effects from Yervoy but it’s worth it! Don’t get discouraged. SCLC is getting more attention and the survival rates are increasing. Attitude is very important. Good luck with your journey. Hi Cindi444! So glad you are doing well and i pray that it continues. I am currently in treatment with Carboplatin and Etoposide, so i really appreciate your experience with it and sclc. I just finished my first of four cycles a week ago and next cycle will start again august 5th. Everybody says, and i think i do as well, that i have a good attitude regarding everything that is going on, so i'm good there. Like you i have not been sick from the chemo, so far. I've heard the second cycle is worse, but i'm sure that's different per individual.T Thank you for your input and good wishes. I sincerely wish you continued good health and all the best in your life and health journey... Link to comment Share on other sites More sharing options...
Isabelle49 Posted July 28, 2019 Share Posted July 28, 2019 Judy, wishing you well with your second cycle of chemo. I will be having mine starting my second round on July 30 -Cisplatin and Etoposide. One of my great supporters here told me the second time around was no diffferent than the first, so hoping and planning on this. Praying you will have the same result. Blessings. Link to comment Share on other sites More sharing options...
judyb75 Posted July 28, 2019 Author Share Posted July 28, 2019 Hi Isabelle49, THANK YOU and my gosh i wish you ALL the best as well! Yeah i hope your supporter is right about the second cycle, it was one of my oncologists that told me it was worse. But i also know that they have no way of knowing that for sure as, like i said, we all seem to respond differently. One day, one moment at a time...that's the way i've lived my life and i don't see that changing just because of this new event in my life. Prayers for you that all goes smoothly during this whole journey...again, thank you! God Bless Link to comment Share on other sites More sharing options...
Susanrae Posted July 29, 2019 Share Posted July 29, 2019 Hi Judy B, Glad to hear you had no side effects from the first round of chemo and prayers are with you as you go through the journey of the second round. So far I have only received immunotherapy and am tolerating that well. I am sure my turn will come with chemo!! Has your MRI been scheduled yet? You will get through it! For me the key is to BREATHE..... but don't move! Your attitude is great.....live each day for the moment! Great words to live by no matter what juncture a person is at in their life. Take care now, Susan Rae Link to comment Share on other sites More sharing options...
judyb75 Posted July 29, 2019 Author Share Posted July 29, 2019 Hi Susan Rae! Thank you so much. I'm happy to hear things are going well for you and i pray that continues. I am, actually, on a combination chemo/immuno therapy. Tecentriq for 1 hr then Carboplatin for 30 minutes and Etoposide for 1 hr the first day. The first day i get 3 and then the second and third day just premeds, Etoposide and and then on the fourth day the infusion. Forget what the infusion is but it's to build the white cells back up. I am 4 days on and almost 3 weeks off in order to build the system back up and ready for more treatment. Yep, so far...so good! I keep wanting to come on and post my experience with the MRI, since i was sooooo scared of it, but it seems something always preventing that or i just need a "quiet" day. But i've been that way all my life. Needing my alone/quiet time. I am happy to say my MRI experience went very well. The gal that i had was AWESOME and i know she made me feel so much better and at ease about it all. She walked me thru the steps that i would be going thru, showing me the machine and all before hand. I can only hope that all of you get as lucky! I only took 1/2 lorazapam and not sure i even needed that. BUT i am glad it's over! The not knowing, for all of us i'm sure, is the worst. I will Susan thank you and you take care as well. Link to comment Share on other sites More sharing options...
Susanrae Posted July 30, 2019 Share Posted July 30, 2019 I totally understand the need for a "quiet" day. Happy to hear the MRI experience went well. The technician involved can really make a difference. And, yes, not knowing is the worst, but it is very comforting to know that everyone feels the same and we are not alone. Take care now, Susan Rae Link to comment Share on other sites More sharing options...
Roz Posted July 30, 2019 Share Posted July 30, 2019 Judy, I want to welcome you and let you know that everyone on this forum supports you and will try to answer any questions you may have. I was diagnosed with NSCLC Stage IV in Aug. 2017! Ro Link to comment Share on other sites More sharing options...
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