nomadawn

Thank you all for yor replies. The wheezing seems to come and go but the medical people dont seem too alarmed so I will put my trust in them. She has got some inhalers that she used to use for asthma and these do help a little. She is on her second round now is doing ok just very tired and lost all her hair Thank you all for being here and helping me with this awful situation. I wish us all better days God bless Debbie

Hi Cheryl, My mum was diagnosed with extensive SCLC in April 2007. She is doing ok so far. It is all very new to me too but this place is my sanctuary - I lurk a lot but try to post as much as possible. I am happy to help anybody if I can. I dont know what I would have done without these people frankly. I hope you have the same experience. Keep in touch & God bless Debbie

Hi, My mum has developed wheezing when she breathes, even at rest.She has never had this before. It does seem too much of a problem and her oncolgist was not duly concerned. He gave her her second round of chemo. Does anyone else have experience of this? Does it mean the chemo isnt working or is the cancer getting worse? I am panicking so any help would be greatly appreciated. Thanks for listening Debbie

Cindy, I have only just joined the forum recently as my mum has extensive SCLC. I have gone from being in a state of total devastation (first news of diagnosis) to a state of hope. This is due to this site and the wonderful people such as yourself who share their experiences and dont forget to return with their good news. You , and people like you, are spreading the much needed hope which is so important to all of us in these difficult times. Best of luck to you an go enjoy life ! Debbie x

Wow !!! Congratulations to you both ! Thank you so much for sharing this wonderful news. My mum has extensive SCLC and this is another story to share with her. I am so grateful for this. God bless Debbie xx

Thank you all for your kind replies. My mum is doing ok although she said there seems to be very little difference in her fatigue from the first week after treatment to now - 3 weeks later. I thought by now she would be feeling a little better.? She has had no nausea whatsoever and her appetite is good. Sometimes it is hard to believe she is so seriously ill ! I am not sure why she is not having radiation as well - maybe this is because she is extensive..?? We are still planning a break next week - close to home. She goes for round two of her chemo in 4 days so I am really hoping she will be ok next week. Her hair is really beginning to thin now and her head is really sore - has anybody experienced this sore head thing? She says she cannot lie on it in certain positions - not sure how to advise her on this one. Thanks and god bless Debbie x

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

Hi I have posted before - my mum has Small Cell Lung Cancer - extensive and has just completed her first round of carboplatin & etoposide. She had very few effects apart from tiredness but was able to carry on shopping gardening etc. Her hair is thinning and she does get sharp pains in her back which radiate round her middle but this is occasional. My question is could she get more effects as the treatment goes on or is this a good indicator of how she will be for future rounds. Also any advice for mouth ulcers which she has just got - salt water being used but is there anything better? Any advice/experiences would be appreciated as I would like to take my mum away for a weeks break after her second round based on the fact that she did so well on the first one. Thanks & god bless Debbie

Hi there, I am so glad to hear your siblings are being more responsive - well done ! With regard to your mum doing everything for your dad - I think maybe pretending to 'ask' your mum how she feels you can all still let your dad feel needed as you think this is really important for his wellbeing. What I mean is try and let her think she thought of the ideas - then you can maybe suggest things like folding the washing or any other stationary work which wont get him short of breath.I think also asking your dads advice on things - (even if you dont particularly need it) so he still feels in control and to be of use to you all. I go out of my way to get my mum involved in little chores and errands as well as helping me pick wallpaper etc etc. Hope this helps a little as I know how difficult these things are God bless debbie

Hi, Just wanted to let you know that you are doing an excellent job in the face of such adversity.I myself have experienced similar problems with my siblings and their negative attitude. I just 'shout the loudest' and talk talk talk to my mum about the success stories on this forum. I drown out all the bad vibes so to speak. Its hard and sometimes I dont even convince myself but I KNOW my mum and dad appreciate my outlook which is infectious to them. I used to get angry with my siblings but now I dont. I understand we all react differently to difficult situations and out reactions are often not ones of choice but instinctive. Nevertheless I always overpower with positivity at every opportunity and I always will that is my way and I am glad of it and I know my parents are. That said I have regular moments of despair, hopelessness and devastation - this is normal too but I manage to keep this under wraps for private moments. You are a wonderful daughter, keep your chin up and god bless you and your family Debbie

Hi Rhonda I am so sorry you are feeling low right now but I do think what you are feeling is quite normal. It is so difficult as a caregiver to always know the right thing to say and do . I always thought i could handle everything sensibly and practibly. I am confident and outgoing but I have to admit my mums illness has 'knocked the stuffing' out of me and I am often at a loss as to how best to help her. I think talking openly to each other helps. I know my mum must be so scared but she has never said this to me so I feel I cant bring it up for her to talk about for fear of upsetting her. It is so hard.I just wanted to let you know that what you feel is common but you are doing the best you can to take care of your mum & you just being there helps at times without the talking stuff.You are doing a good job and you have the right to be tired also - we all have. God bless you both Debbie

Hi everyone, Yet again I am so amazed at the response to my post (I posted on the Introduce yourself forum too). Thanks to everyone here for their thoughtful & helpful replies. I hope that in return I may be able to help people from my experiences. Currently mum is doing ok - hair falling out rapidly (wig is in waiting on stereo speaker!), not much pain today, just twinges. She is tired but happy to be coping this well and continues to get out and about. I dont know if symptons get worse the more treatment you get though. No nausea and good appetite so thanks god !I will definitely pursue an investigation into the pain and numbness if only to allay my own fears - I have been telling mum it is nothing to worry about like the doc & nurse said - but I really feel she needs a check. Best wishes and god bless everyone here and your families - I feel blessed to have found you Debbie x

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

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

"Hi My mum was been diagnosed with extensive SCLC about a month ago.Her brain scan was clear. She has been getting some rather worrying symptons which are panicking me. All these symptons appeared before she was even diagnosed but were not as severe. She has numbness in her left arm and her left leg was affected a couple of days ago but seems to have got better. Her arm still feels 'funny' and weak. She gets severe pain which seems to start in her back and spread around her middle. It can come on suddenly and disappear just as suddenly but when she gets it she is in agony. She also has a sore scalp and can feel small pimple like spots which are tender to touch. They seem to come and go. All symptons seem to have got worse since starting chemotherapy (carboplatin & etopiside). Other than this she is feeling ok and is still shopping and gardening. I would appreciate any feedback on what may be causing these symptons. I am very worried that the cancer may have spread - I have mentioned this to the doctor & district nurse and they say they dont know. Shouldnt she have a bone scan or something? I am a little desperate as to what to do next. Thanks for listening & god bless, Debbie