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Post by Deanne Jenkyns on Mar 27, 2007 14:27:50 GMT 1
My Name is Deanne and I am responsible for setting up this website. My husband is Jimmy he was diagnosed with adenocarcinoma non small lung cancer on April the 27th 2006. I remember just sitting there not being able to comprehend what was being said to us and that it was wrong. I was so scared for him and what he would have to go through while having treatment. I was scared to death of loosing him he is everything to me. We did not know what to expect the fear of the unknown is so scary. There have been lots of tears but we have learned not to accept it but to live with it. Jimmy has been amazing he has coped with everything remarkably well. He has had chemotherapy and radiotherapy. The radiotherapy was harder on him than the chemo. The last CT scan showed that the primary tumour has not grown but they could not tell the impact of the radiotherapy because of the scarring around the tumour. We were then told that some smaller tumours had grown slightly and he would need more treatment. We asked for the drug Tarceva and were told that he was a good candidate for the drug but if we wanted it we would have to pay for it. The only reason I knew about this drug is after Jimmy's diagnosis I turned to the internet looking for other avenues to go down, I researched up to date treatments that are being used in patients with NSCLC. During this research I found out about the drug Tarceva as a second line treatment for patients with non small lung cancer and that patients are being refused this life extending drug even though it is available to patients in Scotland. I am now fighting to get this drug for my husband and wanted to make other patients aware of this drug. You can read more about it on the front of the site via this link www.lc-action4life.co.uk Thank you, Deanne x
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Post by phillipa on Apr 7, 2007 9:10:44 GMT 1
My husband Kent has just been diagnosed with LC, but which type, we will find out by 'invitation' next Tuesday afternoon.
Thank you for setting up this website, I think I might become a regular contributor, if the last lot of treatment MOTH recieved by the local gurus is anything to go by.
Kind regards
Phillipa
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Post by Deanne Jenkyns on Apr 7, 2007 13:26:18 GMT 1
Dear Phillipa, I am so sorry about your husband. I know that you will both be in a bit of a mess right now understatment I know! I hope you get more answers next week and the outlook for him is a positive one. Please let me know what they say next week. If I can offer you any advice and support you I will.
Take care Deanne x
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Post by phillipa on Apr 13, 2007 9:40:13 GMT 1
Deanne,
I have only just checked in this morning. I have been getting my head in the right place regarding Kent's diagnosis and realise this fight is going to be tougher than the last one and I thought that was like pushing soup up a hill with a fork. I am appalled the way the authorities treat cancer patients, so if you need another advocate, just yell, because I am only too willing to start this new fight.
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curly
New Member
Posts: 7
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Post by curly on Apr 17, 2007 22:25:50 GMT 1
Hello Jimmy and Deanne, I'm so sorry to learn about your predicament, you looked so well the last time I bumped into you, which wasn't too long ago. I've recently suffered a massive heart attack but I am now getting back to normal. My mother unfortunately suffered a number of lung cancers and passed away just over a year ago, I am fully aware of the hurdles that are yet to be faced and of the need to keep a lively and positive attitude for all in the family. My mother laughed and joked at everything in life, and this did not change one little bit. Unfortunately, and, disgracefully, when drugs are being evaluated and assessed by NICE, and after successful clinical trial, it is not beyond the bounds of reason to make them available in ALL parts of the U.K. by prescription, and not unjustly only in Scotland! My blog is widely read, not only in South Tyneside, but also in Westminster, and I will continue to highlight your case wherever appropriate and ensure that our politicians and administrators in the NHS get to see the story. Whatever public pressure can be applied, will be applied, at least by me. If there is anything else I can do to help out, please don't be afraid to ask, I get half a million readers per year on my websites, so perhaps I can get you additional exposure. If you need me, you can find a telephone number hidden away on my blog. Best wishes.
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Post by Deanne Jenkyns on Apr 17, 2007 22:42:57 GMT 1
Hi There, First of all I am so sorry about your Mam and that you yourself have had a heart attack how awful for you and your family to have so much to contend with. Jimmy and I really appreciate your support the more this is highlighted the better. We are devastated that we have this fight on our hands on top of everything else but it needs to be done so here we are fighting the fight! The support we are getting in over whelming. So nice of you to pop in and offer your support on here too.
Take care of your self Deanne x
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Post by jljenkyns on Apr 17, 2007 22:58:08 GMT 1
Hi Curly
Im still the same thats what people cant get their heads around because i look well although at the moment i look as though i have a serious case of measels. this is a known side effect of the Tarceva (bloody nightmare) i have had to come off the medication to try and get rid of the rash then resume on a lower dosage. I had never heard that you had a massive heart attack as everytime i have seen you also you have looked very well are you feeling ok now?.Sorry to hear bout your mother, But as you say she laughed and jokes all the way that at least she have given you a lift, I had never heard of your blog before deanne found it and from what i am reading about it the popularity seems to be growing day by day you keep up the good work and i will now be a regular visitor.
take care ( i know where to find you) wink wink
jim
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aditi
New Member
Posts: 3
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Post by aditi on Feb 14, 2008 18:27:27 GMT 1
Hello Jim, It was very nice of you to call us.My Mum was very happy to talk to you.As this is a very rare illness you dont meet many poeple with the same problem... We will meet Andy Hughes as you said for his opinion. Thanks
Aditi (Usha Bhagwat's Mum)
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