nomadawn Posted May 15, 2007 Share Posted May 15, 2007 Hi everyone, I am so glad to have found this place which has brought me comfort since my mums diagnosis. You all seem such wonderful people. My mum was diagnosed approx 3 weeks ago with extensive SCLC. Incurable and poor outlook - lung specialist said only palliative care would be offered. Oncologist much more optimistic and said chemo & radiation later if possible.I do understand however that the prognosis is poor but would like to hear from any survivors to gain hope. She has a mass in her right lung, lymph node involvement & possible adrenal gland too. My mum had flu like symptons but with a persistant cough (which she has had on and off for a couple of years)and also vomiting and bad headache. Since the diagnosis she has actually felt better(no headaches of vomiting) so dont know if she had something else on top of the cancer. She had a CT scan and a bronchioscopy which led to the diagnosis. She then had a brain CT scan but this was clear. She has started her chemo a week ago, carboplatin & etopiside. She is doing ok so far with just tiredness being the most constant effect. She has however had some severe back pain which radiates around her middle - it lasts a few minutes then goes. She also has numbness in her arm and small pimple like spots in her scalp which is quite sore. She says she felt his way when she had the initial flu before the diagnosis. Can anybody shed any light on these strange symptons? The district nurse and our doctor say they dont know and will 'keep an eye on it'. Every little sympton makes me panic that the cancer is spreading as I am still in a state a shock and disbelief but I want to help my mum to stay strong by putting on a brave face for her. Anyway sorry to ramble, I would very much appreciate sharing experiences and learning more in order to help my mum as much as possible. Thanks for listening & god bless Debbie x Quote Link to comment Share on other sites More sharing options...
fillise Posted May 15, 2007 Share Posted May 15, 2007 Debbie, I don't have any experience with SCLC, but there are plenty of helpful folks here, so don't be afraid to ask questions. I'm glad you found us. Susan Quote Link to comment Share on other sites More sharing options...
Don M Posted May 16, 2007 Share Posted May 16, 2007 Hi Debbie: I don't have SCLC but I have read that it is very responsive to chemo. I hope your mom has a good response. I don't know anything about the odd symptoms. Don M Quote Link to comment Share on other sites More sharing options...
ernrol Posted May 16, 2007 Share Posted May 16, 2007 Debbie. There are many here with SCLC that are survivors. I did not have SCLC, but I am sure the others will help. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
dscherer Posted May 16, 2007 Share Posted May 16, 2007 I am in your shoes. My mom was diagnosised with sclc in February. I am so sorry that you also had to join this club, but the support here is amazing and has been a great place for me to find advise and support. My moms is limited so she is currently doing chemo and has finished radiation. Stay strong and stay positive. I am glad you found a Dr who is more positve because you need someone who is going to fight right along with you. I can't help much with the other symptoms but I am sure someone will be able to shed some light. Another place would be to go to www.onctalk.com and post a question to Dr West. He may be able to shed more light. I hope this helps. My thoughts and prayers are with you, Dana Quote Link to comment Share on other sites More sharing options...
ztweb Posted May 16, 2007 Share Posted May 16, 2007 Debbie, Take a deep breath. Read my dad's profile below for hope. He was limited stage, but at the same time, he didn't have mets to the brain either. It seems that while some suffer from the same symptoms from treatments, others have odd things that pop up. Keep an eye on everything, and know we are here for you in prayer and in support. Blessings, Jen Quote Link to comment Share on other sites More sharing options...
Ry Posted May 16, 2007 Share Posted May 16, 2007 Go to the the SCLC forum and read the sticky post toward the top that says "what I did to beat SCLC." It will help you tremendously. Welcome to the board, I am glad you found us. Quote Link to comment Share on other sites More sharing options...
Bev'sSister Posted May 16, 2007 Share Posted May 16, 2007 Welcome to the board! My sister has ext. sclc and is actually doing quite well so far. There is hope, so if a Doctor is telling you that there is not, you need to find another one. Aggressive treatment is the way to go with this. Prayers help a lot too. Keep us posted and take care of yourself. Love, Bobby Quote Link to comment Share on other sites More sharing options...
nomadawn Posted May 16, 2007 Author Share Posted May 16, 2007 Wow !!! This place is truly a godsend. I cant believes how many replies I have. Thank you all so much for taking the time to reply with your kind wishes and advice. I wanted to reply to you all personally but I dont have that much time at the moment. I am sure now I have found you I will be pestering you all with questions but also, I hope I will be able to help others here from my experiences which I am happy to share. Speak to you all soon God bless Debbie Quote Link to comment Share on other sites More sharing options...
Welthy Posted May 17, 2007 Share Posted May 17, 2007 Debbie, Welcome to the boards. So very sorry about the diagnosis, but glad she has a plan in place to fight. My only suggestion would be to read the profiles of the people on the board as they give great insight and information. Regards, Welthy Quote Link to comment Share on other sites More sharing options...
lc46 Posted May 19, 2007 Share Posted May 19, 2007 Hi and welcome to a wonderful site-If I didn't find this site in Sept when my Mom was dx I don't know where else I would have found any hope. Please read my Mom's profile and let your Mom know how well my Mom is doing. She was @ deaths door when she started her chemo-her mass was wrapped around her aorta and coughing up blood. She just finished today!! her 36th round of radiation (which is pretty much unheard of with extensive) but since everything was gone outside the lung after chemo and her tumor shrank 90% they decided to give it a try. Please let your Mom know there are survivors-CindyRN-6 years-another woman (I forget her name) her friend 8 years and I'm sure many more....Please keep us posted. Dar Quote Link to comment Share on other sites More sharing options...
nomadawn Posted May 20, 2007 Author Share Posted May 20, 2007 Welthy, Thanks for the reply - I am busy checking out the other posts on this site as you suggested and i am finding them to be so helpful in many different ways. Your story is truly inspirational. Dar - thank you for your message of hope - it is just what we want to hear. My printer is broke but I intend to print your stories out when I can get it fixed to show to my mum. I have been telling her about you all but I think it is better for her to read them. Mum is doing ok and we hope to be going away for a break in a couple of weeks - not too far away - 1 hour drive. She will be on her second round of chemo then so I just hope she is feeling ok. She is really looking forward to it. Blessings to you and your families Debbie Quote Link to comment Share on other sites More sharing options...
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