petitions to the Government

Today, I saw my oncologist, we had our usual natter and he told me that he is still surprised that I have got so far with no obvious signs of my inoperable lung cancer returning. He told me that the chemo and radiation I initially had was not intended to cure me, but rather, to relieve symptoms and get a bit more time. I asked him if he thought the LDN was the reason I had done so well, and he said well it IS being spoken about 'in high places', I then told him about LDNNow and how we were all working hard and how I had stood outside of Tesco's getting signatures for our petition,and about what everyone else was doing. We discussed Zagon and Berkson and others, he is becoming very interested, not like when I first approached him and gave him Mary's book. So folks there are rumbles abroad, the word is getting out, especially with all of the press coverage we have managed to get so far! No longer does my onco think LDN is a waste of time, he is quite amazed!! Now I have a favour to ask you all, I have circulated mails recently as we still need signatures for the petitions, please, if you are suffering, or have someone who is suffering then I beg you not to go off line until you have signed. Never mind where the petitions are, because whatever happens here will ripple right across the pond and hopefully all over the world. Can I ask you to take part in the big push!!! Let's get these petitions filled up and show the world this is what we the people, want!!!!! To give your permission to have your name added to both petitions go here - http://www.bwmbagus.demon.co.uk/Resource/PETITIONPAPER.pdf but remember the number 10 petition can only be signed by British subjects or ex pats, whilst the Scottish one can be signed by anyone anywere http://tinyurl.com/SPLDN so please, I am imploring you, if you can sign one or both it would be wonderful, please help us to help you....... LDN has helped me So very much!!! Is it helping you?? If you can answer yes, then please sign one or both of these petitions..........Our thanks.......
Best wishes
Celia

By sticktogether
Posted October 29, 2009 at 1:14 pm
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You have a very interesting post. My sister may consider the LDN down the road and I am happy to hear what it's done for you. Tell me, you have not updated your information to explain what stage you are and do you or did you have mets. Are you NED now? For the benefit of the rest of us this would be really good information to have.

Oh, and what chemo did you have? How many rounds? How long have you been on LDN? Were you NED when you started taking it?

By Celia123
Posted October 29, 2009 at 1:36 pm
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Hi, I had cisplatin and carboplatin, and a few shots of radiation - palliative only, and given 6 - 12 months. Well I wasn't having that!!!:-)) The treatment certainly knocked the cancer on it's ass and then as I was waiting for surgery to my hip, I started first of all on Iscador, as you cannot take opiods when taking LDN, as soon as the surgery was over, I waited 10 days then went on to the LDN. Everyone who started the clinic with me has died, it was so upsetting I tried not to get close to anyone after the last one, I was stage 4 with mets all over my chest wall initially and yes I am NED now and have been for three years. Please, will you ask everyone you know to sign the petition, I am knocking my ass off here and need all of the help I can get in order to help others......
Best wishes
Celia

By cuddles53
Posted October 29, 2009 at 4:30 pm
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Dear Celia,
I am also a big believer in getting this LDN out to the public, but I like you, am also NED and it has been 3 years and 9 months now. But... I did not take LDN. I took a lot of radiation to the chest, I am a stage lV, what was called before a wet 3B, since I had pleural effusion, and they changed it to a stage lV now. I had the radiation as I said, in high doses is all I know ,my tumors were in the chest and lymph nodes, My tumors were quite large, radiation shrank them both in the chest. I then had carbo/taxol combo once only, I had an allergic reaction to it, so they put me on Gemzar alone. My question is how do you know, that your cancer might not have returned anyway,. This is my problem with maintenance therapies. I do want to be on them but, this feeling I have in the back of my head is asking me why? I have not had any progression without anything else. You may not have either, so it is very hard to really know if it was the LDN, or not. I could see why in your case you would never risk not taking it. I also can see why you would encourage others to take it, as I also do too. I just wonder if the drugs they gave us back those three years ago were really good, and research really hadn't all been collected yet on the survival rate of those patients, like you and I.. I agree on taking this for someone, but sionce I never even knew about it back then when i finished all of my chemo and radiation, I didn't go on itm, I may have had I known today what I didn't know then. I am very lucky to have stayed alive having not been on any maintenance. Not from lack of trying, I still am in pursuit of the Lucanix vaccine. I am awaiting my doctor who said he would be a sponsor for me to get this vaccine to give me his final approval, I will be finding out the beginning of next week. Then we will see if I get it, or I don't. It has been a long wait, and I always have in the back of my mind if I don't get it, maybe the LDN will be on my list of things to do.. Good luck, and thank God you did go on this LDN.
Sandy

By Celia123
Posted October 29, 2009 at 4:50 pm
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Hi Sandy, my onco told me today that it is only one in thousands who are so very sensitive to conventional treatment when the cancer is so far gone as mine was. True I may have been OK without anything else, but it is doubtful, in fact, he is amazed, I do not fit the 'usual'...... Maybe I am just one of the few, but I would not dare come off LDN now and since it is so cheap and does no harm, well, onwards I go. I guess the main thing is to get it trialled and then we can get some good answers, hence the petition. Many I know, including doctors, take it as a preventative, none of my treatment was high doses, just enough for symptom relief, and there you go, I am even putting weight on again so great stuff. You have done so well, it is so good to hear, especially after all of the horror stories, you keep good!!!!!
God bless
Cheers
Celia

By cuddles53
Posted October 30, 2009 at 12:43 am
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Dear Celia,
Would you suggest someone like me to start taking it for prevention? I am on morphine and it is to help me breathe better, so I know I would have to come off of that. I don't know if there is another drug as good as morphine to help me breathe, this is the only problem. If it worked real well maybe I could go off this and see how bad my breathing actually is now.
I am trying to get the Lucanix vaccine. This is also a good maintenance thing to do.
My oncologists at the office I go to do not want me to take anything. they saidif my cancer returns he would want me in his trial which is Lactoferrin. I think it is spelled this way, soemthing to do with iron. it is his trial this is why. i am not sure of what it even does.
god bless Sandy

By Celia123
Posted November 4, 2009 at 9:55 am
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hi, LDN is Low Dose Naltrexone, if you google it you will get plenty of hits....

Sandy, I don't understand why you are on morphine to help you breathe better? It used to be my understanding that morphine could depress breathing, but maybe there is new thinking on that? For breathing I take Spiriva, salbutomol and seretide.....

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