Just sharing with someone.

[angels5454]

Hi, I've not been on this sight for a long time. The dr's at Christies in Manchester think my case is a unusual case. I had half my lower left lobe taken out in 2008, they never offered me chemo, they said that I do not need it and they hopefully have got it all. I continued going for my check ups but then in 2010 they saw that the cancer had grown again but this time in both both lungs, I was devastated. They took biopies out of my right lung but the results came back inconclusive, although the doctors say it's the cancer but they want to hold back with the chemotherapy until the cancer gets worst. It's sounds odd but the doctors think if they give me the drug called irressa well it can hospitalise me or kill me. The cancer I have is a slow growing cancer called non-small cancer, and because I feel well and look ok. the doctors think it's best to put the drug on the back burner until the cancer gets worst. I go to see the dr's at Christies every three mths and I have a CT Scan every 6mths. Three mths ago I got my results from last CT Scan and the dr's told me me the cancer has stared to grow again by 2millimetres, I felt ok when the cancer was not growing but now I feel disappointed and a bit low. I go back to see my consultant in two weeks time. Just wanted to get this off my chest.

[Sheeni27]

Hi my story is a lot similar to yours but I've had 2lots of cho and was on tarveca for 4ths but was taken of them as they were not working for me so now on a trial in which I started last week, I felt like u so down but I had to pick myself up and carry on with life as best I can I too look and feel well do I'm making the most of life don't be too hard on urself you are coping the best u can try talking to someone outside ur family if it helps and u can always chat to some one on this sit, we all know what u are goin through it tough I know but please stay positive we r here for you

[LorraineD Partner Roy Castle]

Angels

Thank you for posting and do feel free to let off steam. You seem to be in a very unusual situation, with a slow growing tumour after your initial treatment. It is hard to look back and wonder about the "what ifs" of your original treatment options, but it is positive that you have had a relatively health six years with regular follow up.

It may be worth talking to your doctor in a couple of weeks about what are the best treatment options for you now and looking ahead. Depending on your general health your team will look at which treatment - whether chemotherapy or targeted therapy might help manage your tumour and how suitable they are for you. Some treatments can have difficult side effects so they need to be weighed up carefully. It might be worth writing your questions down and talking to the doctor about next stages, if that is something you are concerned and thinking about. Not everyone wants to think too far ahead, it is entirely up to you as to whether that is the right way to help you manage.

It might be worth talking to your team about what additional support and guidance you can have even if active treatment is not the best option for now. There may be other support services at Christies that would help you practically and emotionally knowing that your cancer is an active, if slow growing, part of your day to day life.

If you want to talk things through do contact our Freephone helpline, or it may be worth asking at the hospital if you can talk over your concerns with the lung cancer nurse specialist.

best wishes

Lorraine

on behalf of the Information & support team

[angels5454 in reply to LorraineD]

Hello Lorraine, thank you for the reply, I have been back to see my oncologist on the 6th of Febuary and she tells me the cancer has grown again in both my lungs another 2millimetres. She says again if she gives me the drug irressa it might get rid of the cancer but it will come back again and the irressa will not work a second time and then they will have no other drug or treatment to offer me. They will carry on seeing me instead of every 3months she will see me in 2months time.

I went to a breatheasey meeting group the other day which is held in burnage in Manchester but again I was the only one with lung cancer, I was told that when there are support groups for lung cancer that there is a poor turn out as people are to poorly to attend and don't often survive lung cancer.

I have decided to go and see a new oncologist at the Christie clinic on Tuesday to get another opinion. This will be the private clinic which in the past I have been there. I don't build my hopes up though.

Christine.

[angels5454 in reply to LorraineD]

Hi Lorraine, Not had chance to reply to your last message. As I said before the cancer that I have is a very slow growing Cancer. Over the last 6months it has grown in both lungs 4milimetres, Dr Blackhall at Christies said there is no point in giving me the drug irressa not just yet as it would get rid of the cancer but then the cancer will come back and then they will not have any other drug to give me as the irressa will not work a second time. I also went back to the christies clinic and saw a consultant oncologist called Mr Lee. He was very informative and all what he said I asked him to write it all down. He just says that my case is very rare. There are more things he said about they are still testing the biopsies they have from my lungs. I will have to root the information he wrote down for me and send it in my next message to you.

Regards Christine Rose.

[Hidden]

You should research hyperbaric oxygen chamber treatment A few sessions in this and it will help you no end. also start taking 7% lugols Iodine this is the old formula which is perfect for the body start by taking a couple of drops twice a day in some distilled water (its essential you use distilled water in as many things as possible chlorine is added into water and interferes with the uptake of oxygen) after food build up to a couple of drops every 2 hours , cut out as much sugar as possible as this ferments in your body and causes fungus to multiply which inhibits oxygen and of course Dairy products and try cutting out meat the protein is inferior and also the growth hormones they add into the feed to accelerate the growth of the meat accelerates the growth of the cancer.

you could use a nebuliser for the iodine as well as that is very good for the lungs.

Iodine is anti fungal which is why it is so effective at overcoming cancers and a host of other illnesses.

I would suggest you do a high level of research rather than trusting someone else with your life use google scholar to find out the latest scientific proof

Another excellent form of fighting cancer is seaweed this contains cell salts which is one thing that you are deficient in as well as oxygen.

There is a lot of other stuff you can take but these few things will heal you

[angels5454]

Still here, just want to chat. It's still watch and wait for me. The cancer seems to grow when I am under lots of stress which I had been but when I'm not stressed and eat well the cancer stays still. It's weird position to be in but may be that's why they call it living with cancer. I try not to think about what I have and get on with my life. I am quite well apart from I pick up the slightest bug eg coughs and colds and it takes months to get rid of them. Some people from my church see me looking so well and when they have coughs and colds they visit me and I end up with what they have got. I had to be strong and I texted this particular woman from church and told her nicely not to call to my house if she is poorly like she was a couple of months ago as I still have a sore throat and can't get rid of this cough. I was ok until she came around. I know germs are every where and in the air but I need to avoid. Christies the hospital are still saying that my situation is rare but it doesn't help me.

[Liampaul03 in reply to angels5454]

Hi, I have been on a clinical trial at Christies since last November, like u this is 3rd time the cancer has returned I was diagnosed in April 2011 had left part of lung removed with 3mths of chemo, had 2 yrs cancer free for the bugger to return in rt top part of lung and in lmyph nodes what had been left in chest wall on left side, had 3 mths of chemo to then be told after just 3mths if no chemo that there were nodules on both lungs, so u can amagine wot thoughts I had goin thru my head, and that was last sept, I had to search internet to gind out wot trials were available and then went bk to my oncologist and he put me forward to christies, I have been so well on this trial no side effects sand have worked full time throughout my treatment, I have the last one nxt week and then I will monitored closely, I will stay in touch and let you know do good luck and stay positive xx

[angels5454 in reply to Liampaul03]

Hi liampaul03, thank you for sending me a message. Up till now I do not have any cancer in my lymph nodes so not had any chemo. I get frustrated wandering how long will it be before the docs put me on a drug. I'm not very good with any drugs I always get bad acid burning and bloated with just taking antidepressants which I had to come off. I get the migraine with the aura with some of the antidepressants. I take omepprosol first thing in the morning and it's suppose to put a lining on your stomach because I get lots of acid. I go back to Christies on Friday next week just to have a chat with the doc and have normal chest X-ray and bloods taken. Then in another 3mths I will go back again and have a CT Scan and bloods and again wait for the results.

Keep in touch and let me know how you are doing and good luck to you.

Christine xx

[Liampaul03 in reply to angels5454]

Will let you know how it goes at Christies nxt week ok, take care..

[holly17]

Good morning I hope you do not mind me contacting you. I was looking through the forum and came across you and its so strange I could almost be reading my notes I was found to have cancer in the right lung and had the bottom section of the lung removed in 2008 and thought that was that it return a short while later was also told no need for chemo but I insisted and had a course of the treatment, to cut the story short they little devils never went but stayed very slow growing. I was then given what is called RFA where they went in via my back and burnt the tumours this slowed the growth down, I had this a couple of times but then last year it was found that it had spread to the left lung, had the RFA again this time on both lungs at separate times over a couple of months but the left lung collapsed so it was decided not to operate again. then a couple of months ago my lovely oncologist lady told me that the latest scan showed they were growing which I was not wanting to hear. She has put me on Erlotinib Tablets 150mg per day which are meant to act like chemo. Unsure if that is working yet as I have full blood test and a scan later this month and see the oncologist on the 25th. Like you I have to stay clear of people with colds but try and stay positive as in my self I feel and look alright other than most of the hair has got this time, so stating positive. Again hope you do not mind me writing.

All the best stay positive Fred (holly17)

[angels5454 in reply to holly17]

Hello Fred (holly17). Thank you for contacting me, I some times feel that I am the only one of my kind out here. If you know what I mean, having a rare lung cancer and not being treated as far as drugs or chemo is concerned and just waiting is a lonely place to be. Don't get me wrong, I don't dwell on what I have, I just carry on with life but it's always there in the back of my mind. I went to my church this morning and people always say" and how are you"? I just say" I'm ok "but they can't understand why I am not having any chemo, it's hard to explain and one lady I know thought that I must be telling porkys because I look so well and my hair is still my own and I'm not losing weight. Back in 2008 when I had half my left lung removed, It did take it out of me but I pulled through and then in the 2010 when the consultant told me that it's back again but this time in both, well I was shocked and I just thought that's it now, no one can help me. But here I am never had any drugs or treatment like chemo or radiotherapy and I'm doing ok. I go back to see Dr Blackhall next Friday she is head of the drugs trials but she says that she has no drug for me yet and hopefully if the cancer carrys on like it is growing very slowly or sometimes not growing at all, well she is happy just to keep watching me for as long as she needs to. I suppose that's why we call it living with cancer. I do know one thing that makes the cancer grow and that is when I am under stress. But I can't do much about that, it's the way I am. I'm sorry to go on about myself.

I hope the tablets that you are taking are doing the job. Please keep in touch and let me know how you are doing. I wish you all the best of health.

Christine (Angels 5454)

[Kenzie123]

Hi Angel, I also had a left upper lobectomy 7 weeks ago. The told me there was also something on the lower lobe, but want to keep an eye on it, maybe gi e me radiotherapy. I see surgeon again on Thursday and anxious to see what the are going to do. Have been really unwell with infection since operation, unable to eat. Hopefully he will have some answers for me, as I can't go on like this x

[angels5454 in reply to Kenzie123]

Hi Kenzie, I had half my left lobe taken out in 2008 and they said that they had caught it all but then in 2010 the cancer had returned but in both lungs, they took more biopsies out but they came back inconclusive so they just monitored me with ct scans and pet scans and I was wandering why they would not give me chemotherapy or radiotherapy they said that I have a slow growing cancer and at the time they didn't have any drugs to offer me. I felt well and so just plodded on. It was in 2017 that they decided to do another biopsy which went pear shaped and then they said the cancer has changed so they can give me this drug I'm taking now called iressa. I had bad side effects but persevered and it reduced some of the cancer by 30% which I was delighted with but then another 3 months went by and it had not done anything other than stop the cancer from growing. We are all different and our genetics are all made up differently so don't give up hope, they will probably have something planned for you. I am still here and I have battled it for nearly 11 years. They can offer patients a lot more now then they did years ago and lots of people are living longer with cancer and can lead a relatively normal life but I do understand your concerns. I wish you the best of luck for today when you see your Oncologist. I will be thinking of you.

Angels (Chris) xx Ps I went for my CT scan results yesterday and the cancer faded in some area's and in others it's gone, so think positive if you can x

[Kenzie123 in reply to angels5454]

Thanks Chris, glad to hear your scan went well. You sound really positive, wish I could steal some of that. I was back in hospital again yesterday with breathless and pain, but better now and back home. Just so sick of them, I'm used to being on the other side, as I'm a nurse. I'm dreading today, but at same time I want to know what I have in front of me. I think maybe because I have been so unwell since my operation I have kind of lost hope. I felt normal, worked had a good life. Now it just seems life is shit, excuse my French. I never in all my nursing career could imagine what my patients were going through, but I do now. Thank you so much for replying to me, it means a lot xx

[Treemoth]

Thanks for sharing. I am waiting for a treatment plan. Chemo has been mentioned but not finalised yet. It's difficult but we might both be around for quite a while I believe. Good luck.