Jana_W

I am so sorry to read about the latest events. Wishing you enough strength and love to help at this difficult time. Jana xx

Thanks Gail and Ginny. Mum starts the radiation treatment tomorrow. They are going to try doing both sections of the spine at the same time (at Mum's request) and if the side effects get too much for her, then they will have to do them on separate occasions. I think she'd rather just get it over and done with in the one instance though! Her and Dad are holding up pretty well so fingers crossed the radiation treatment does what it is supposed to do. Thinking of all of you Jana xxx

Hi I am so sorry to read about your friend's diagnosis. Please don't listen to the doctor's prognosis, because he really doesn't know how long your friend, you or anyone else is going to live. He is making an estimate based on all the outcomes of patients he has had. It is true that the survival rate for lung cancer isn't great, however, there are people who are beating these statistics every day. And you will find plenty of them on this site. Jana xx

Peggy, I am so sorry to read the test results. I can only imagine how disheartened you must both have felt with them. I don't know what else to say, as I am not doing a great job of things myself at the moment, but know that I am thinking of you. Everything about this disease sucks. Jana xxx

Of course you are not overstepping the line Peggy. Thank you so much for your reply, especially when you are going through such a similarly hard time yourself. It's scarey isn't it? Mum has been having pain/discomfort in the areas they are going to radiate. I don't think she would describe it as debilitating pain, however the discomfort is enough that it impacts on her mobility on a daily basis. I think this is the main reason they radiate, because as you mentioned they don't want to unneccesarily irradiate the spine. I also think that the tumour in the cervical spine is of concern as if that was to undergo a pathological fracture it could be quite devastating as the tumour is so high up the spinal cord. Perhaps the MRI Mum had revealed this was a concern. I know that Mum said there was "alot of spots" on the MRI and bone scan, so I know that there are only treated the spots that the onc. is concerned about, or are causing Mum problems. There are lots more that aren't be radiated. I presume they are keeping a close eye on your husband's spinal mets to make sure there is no risk of spinal cord compromise? Not sure if I helped you at all here Peggy, but please know my heart is also with you at this time. Don, Karen and I often talk about Lucie, and the skeletal metastases she has had to deal with. It does give us a lot of hope and often when we are feeling a bit down about the latest news one of us will remind the other of Lucie. I pray Mum will have the same success. And hopefully fatigue will be the worst of her side effects. A good excuse to rest up in bed on these wintery days we are having. Thank you again, so much. Jana xxx

Hi all Mum had her bone scan last week and then a follow-up MRI and x-ray this week. The results weren't very good unfortunately. They have revealed multiple skeletal metastases in the spine, hip and femur. The femur is still very small (~1cm) so they are leaving that one for now, as well as the hip (I think the iliac crest counts as the hip?). The doctor wants to radiate two of the areas he thinks are of concern and that is her cervical spine and lumbo-sacral region. Mum will start this treatment next week and is going to attempt having both areas radiated at the same time, although the doctors says this might cause her too much fatigue. But they will give it a go. Needless to say, it hasn't been the most sunshiney of times for us. It's so painful to think of Mum's disease progressing and if it makes me feel sad I can only imagine how it makes Mum and Dad feel, but I have been reading the posts here and seeing that lots of people have had skeletal metastases and been successfully treated and lived with them for a long time. Mum has had WBR before. Can she expect the same side effects from spinal radiation? If anyone has any experience on this that would be great. And please spare a few thoughts or prayers for Mum. I know everyone already has so much on their plate, and please know I am thinking of all of you as well. Jana xxx

This just gives us an opportunity to send you even more positive thoughts. Jana xxx

Mum had one put in over eighteen months ago and has had no problems with it. She has also had it used for blood work etc. Mum also goes swimming with it. She has also had scans with it and no problem, but the radiology technician needs to know what type of port it is (I think they need to know what it is made from, as metal things are dangerous in an MRI) Jana xx

Hi Michael Welcome to our website, but I am sorry you had to find us. I agree with the others, and suggest you ignore the prognosis of one year. The doctor really has no idea if that's the case or not. My Mum is a nearly two year survivor of Stage IV NSCLC. It can be done! Jana xx

Hi I don't think I have much useful information for you but I wanted to let you know I am so, so, so sorry you are going through this at the moment. You are right, in that there MUST be something that can be done about the dehydration. Can they not give him some IV fuids? I wish I had more helpful advice for you. This disease sucks. Jana xxxx

Many prayers being sent your way and hoping for good, clean scans. Please let us know. Jana xx

We have a similar problem in Australia. International Lung Cancer Awarenes Month/Day is not recognised by one single Cancer Foundation in our country. It's appalling. I have approached them (at our state level) to ask if they would do something this year, and their answer was a firm "NO". They felt that as they could not offer a solution (such as annual screening etc) they could not run a program. But they went to great pains to tell me about all the money they spend on smoking cessation programs, which is alot. It's great that they do that, but those smoking cessation programs don't do much good for my Mum or those people facing a new diagnosis or the loved ones of that person. I am still trying to find a local organisation to get behind Lung Cancer Awareness Month. And you know what's even worse, I have become a horrible person at time. Kylie Minogue was diagnosed with breast cancer yesterday and my second thought (after feeling very sad for her) was that why couldn't lung cancer get a high profile glamorous superstar to help promote their cause??? Pretty sad, huh? Jana xxx

Congratulations. Keep up the great work Jana xx

Great to read that you are home safe and sound. Take care. Jana xx

Hi Larry My Mum finished WBR in February, and it was in about early April that she started having pretty bad nausea and fatigue. We were all really worried about her as didn't understand how these symptoms could be attributed to WBR that had been finished a couple of months earlier. However, her nausea has now pretty much subsided now and the fatigue is greatly improved too. I hope this helps to give you some comfort. Jana xx

Thanks everyone for the encouragement. I get to meet them next week, so hopefully they will still like me in person (they haven't met me yet!!!). Jana xx

Hoping for good news. Jana x

Thanks sis! I am not as modest as you think as I put up a post about this in the Activism Forum earlier this morning. I think that alot of what has enabled Karen and me to be so confidently vocal in our attempts to improve the situation in our state (and Australia) is the passion of everyone here at lchelp. I have no doubt that without this forum I wouldn't be about to embark on this position. Of course the support of my sister is invaluable also It really is a team effort. Jana xx

Thanks Katie I am sure I will be asking you for advice/help along the way. I am so excited at the prospect of being in a better position to help advocate for people affected by lung cancer and to raise the awareness in the community of lung cancer. They are wanting to set up lung cancer support groups in my state, so I am keen to be able to direct people to your website for support and information. I have also been thinking about the clear wristbands and promoting them locally. Will let you know more after the meeting next week. Thanks again. Jana xx

Hi all Not sure if you all remember Karen and I placing several posts earlier about the lack of support and advocacy for people affected by lung cancer in Australia. For instance, no organisation recognises Lung Cancer Awareness Month, and when I approached our state Cancer Council they told me they were not going to be doing anything about it. So I have been lobbying with the Cancer Council (to no avail) and then moved on to the Australian Lung Foundation. After much discussion and emailing with them, they seemed to be interested in doing something about this situation. Last week I got a phone call from them and they want to fly me over to Brisbane (on the other side of Australia from where I live), to attend a National Meeting of the State Co-ordinators as they would like me to be the State Co-ordinator for my state. It is a voluntary position and I am soooooooooo excited about it. Yay! Maybe I can do some good! Just wanted to share my news. Thanks for all the help and support. Jana xxx

Thinking of both of you and sending lots of love. Jana xx

Oh I am so so sorry to read about this. I don't know what else to say. We are all here for you,and your husband. Jana xxx

Hi Don and Lucie Welcome back! Glad you had a nice time on your cruise. Hope all is well with any scans that are done on the leg. Jana xx

Thanks for the support guys. I think my whole family is feeling rather anxious at the moment. Only three sleeps 'til we find out results. I keep trying to remind myself to enjoy these days and be happy because if the results are worse then these will be the last three days where we didn't know any better. So hard to do that though!!!! Am off to visit Mum and Dad today! Thank you again for your support. It means alot to all of us. Jana xxxx

Wonderful, wonderful news. So happy for you both. As for the hair, Mum is still yet to completely lose her hair, despite being told that when she had WBR she would definitely, definitely lose all of her hair. It's still there Congratulations again on your news. So glad you've got NED in your lives. Jana xx