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Post by shazbok on Feb 8, 2008 15:37:36 GMT 1
Hi not sure if this is going in the right place apologies if it's not. I was diagnosed with NSCL 2nd March 2007 after 5 mths of ?asthma, chest infection and the most likely Sarcoidosis as I was a 46yr old non smoking female, but how wrong they were Treatment started 2 wks later IV Gemcitabin & carboplatin oh what joy I had been a Haematology technician for years and knew I had dreadful veins and tough skin and they didn't disappoint a 2-3hr appointment took all day but at least I didn't have all the sickness probs, I lost alot of hair which upset the kids but was still left with more than most people start with and after losing weight in the 1st couple of weeks with stress it all went back on and still is!! I was lucky in that I work for my husband Payroll & Accounts so I could work around clinic and tired days after 4 cycles another CT showed only minor reduction so stopped and have just been going along quite happily still no pains just a little more breathless as November approached managed lots of family hols (2 boys 19 & 16) best 1 being Florida went on all rides and it was rest of family wanting rests 'told them rests are for wimps' In November consultant said we should start applying to PCT for Tarceva. Average prognosis givenwith no treatment was 8 mths so 8mth and 1 wk after diagnosis off I went to New York on a girlie Xmas shopping trip I'll show this cancer whose in charge!! 2 days later another CT scan only minimal changes - great Xmas we went to France skiing for 2 weeks - can recommend altitude and clean air to everyone felt brill skied 5 days out of 12 as legs just very very unfit more than lungs!! Came home 7th Jan PCT say no to Tarceva so now waiting to hear from my appeal letter. Have mentioned to my consultant about Tarceva access program but she says that you have to have Docetaxol as well is there anyone out there obtaining Tarceva through TAP and NOT having docetaxol? Also is there anyone funding Tarceva themselves and receiving all other treatments on NHS as when we said we would fund it ourselves - yes no prob can see diff consultant next week and go completely private which is really an open ended cheque book! Thought I would come on and tell my story as yes I have got stage 4 inoperable Lung Cancer but I feel really well no pains(as yet) can still run upstairs walk up the hill to my house- just don't expect me to talk straight away. Still carrying 3stone too much weight and don't look poorly and the good news is at last I am classed as YOUNG!I know that I am one of the lucky ones and that tomorrow it may all turn and go down hill, but after reading lots of peoples stories on lots of sites alot of it makes very sad reading and I just wanted people to know that for some life is still good, I have to remain strong & positive for all my boys husband included and the rest of the extended family as they didn't take the news at all well, and all look to me for support - brill. To all of you out there good luck and slap on that smile x x
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Post by Deanne Jenkyns on Feb 8, 2008 16:25:18 GMT 1
Hi, 1st of all welcome to lc site, but sorry that you have to be here too! As for having to have docetaxol to get TAP your oncologist is talking absolute rubbish! There is more about TAP in the Tarceva section on the message boards you can print this off and take it to your onc. I am pleased to read that another patient is doing well. My husband is doing great, odd niggle hear and their which is always a worry, but compared to this time last year he is great leading a full normal healthy life!
Take care & Goodluck! Where are you by they way? which PCT are you under? Deanne xxx
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Post by shazbok on Feb 8, 2008 17:15:14 GMT 1
mega news since writing before (sorry it went on)I have been in touch with Patient Advisory Liason Team for Doncaster, to see how I find out when next meeting will be to discuss my appeal, they just got back in touch to say DRUG HAS BEEN APPROVED no idea why no one has told me and they have told some Dr in Sheffield who I have never heard of just hoping my onclogist has so I have just e-mailed her with the news -I am seen in Doncaster where i live at a satellite clinic at DRI to save travelling to Weston Park in Sheffield excellent service chemo is done here also in a specially built unit called the Chatsfield Suite. So at the moment Doncaster PCT can do no wrong! So very excited/apprehensive at the prospect of starting will keep you all posted.
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Post by Deanne Jenkyns on Feb 8, 2008 17:29:17 GMT 1
Hi, thanks so much for updating and with such great news! Stick around and let us know how you are on Tarceva. Anything you want to ask about the drug ask away and we will do our best to help you or point you in the right direction! Congratulations once again, hope it works as well for you as is has on Jimmy ;D
Deanne xxx
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Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Feb 9, 2008 13:13:14 GMT 1
Hi,
Just wanted to welcome you to the site.. i'm so pleased to read that you are starting Tarceva, it seems to be such a succesful drug. You sound very strong and you have an amazing outlook i'm sure that this will help you fight this.. although i am sorry that you have been faced with this battle. You'll get plenty of support from all the members here.
Take care.
Love and ((hugs))
Vicky xxxxxxx
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Post by daisey on Feb 9, 2008 14:15:49 GMT 1
Hullo to, Great to hear you will get Tarceva without all the stress! From what Bobs onc says, a non smoking female carries the very best chance of a positive result on Tarceva so fingers crossed for you. If its any help, Bobs been on Tarceva 4 weeks now, the full 150 dose and his pain is better, sleeping well, eating pretty well and the side affects are quite copeable with right now. Our best wishes and a large hug too. Daisey x
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Post by dtay on Feb 9, 2008 19:14:07 GMT 1
Hi - great to hear good news - I hope that the Tarceva does great things for you. Jimmy who is Deanne's husband has been on it for quite a while now and he is doing really well. You've a fab positive attitude and I firmly believe that helps alot - you go girl and knock that cancer right down on its back ! Love dawn x
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Post by wendy on Feb 9, 2008 20:34:26 GMT 1
Hi there glad to hear you managed to get Tarceva, hope it does its work and that you are one of the lucky ones. love WendyXX
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Post by shazbok on Feb 10, 2008 18:32:59 GMT 1
Thanks for all your replys, received letter yesterday from MP - Caroline Flint congratulating me on the good news and forwarded the letter she received from PCT, find it amazing that my MP has been informed on 1st Feb but neither me or my Oncologist!!! but at least they said Yes. Are there many females on Tarceva on this site as most seem to be men seems strange as the group is supposedly works best for is female, non-smokers with adenocarcinoma and Asian-my PCT's reason for refusal was didn't meet criteria and wasn't treatment for lung cancer!! was just wondering if women had diff probs with men and their skin rash due to make up etc. Hope everyone has had a good day at least the sun shone and it was dry at least here in Doncaster. Love n hugs to you all
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Post by Deanne Jenkyns on Feb 10, 2008 20:24:05 GMT 1
Hi Shaz, wendy may be able to give you skin advice? Jimmy had terrible rash to begin with he kept his skin moist and clean. Exfoliated regularly and also takes steroid here is a page containing what helped him. www.lc-action4life.co.uk/tarcevarash.htm Take care Deanne x
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duane
New Member
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Post by duane on Feb 11, 2008 14:07:04 GMT 1
Hi Shaz My wife, Angela is 41 years old & has never smoked, she has stage 4 NSCLC. She started on Tarceva in September last year after unsuccessful chemo. Her 1st x-ray showed a considerable reduction in tumor, it has been static ever since until last Friday when the last x-ray showed another slight improvement ;D ;D ;D. Her rash was terrible at first but now we hardly notice. Hope you have success. Take Care Duane
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Post by Deanne Jenkyns on Feb 11, 2008 14:09:46 GMT 1
Hi Duane, I said said in my mail great news ;D ;D ;D It gives me a huge boost!
Deanne xxx
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Post by shazbok on Feb 11, 2008 21:50:24 GMT 1
Hi Duane So sorry about your wife Angela having the dreaded LC I hope she is feeling well are the x-rays you mention normal x-rays or CT scans? I ask as my X-rays show very little and I have to have CT scans to actually see anything. I sound very vain asking about the rash but really it's to warn everyone else -kids can't wait say they are going to get there own back on me and hold me down to squeeze them!
With a bit of luck I'm off to Sheffield on wednesday to see about being prescribed my wonder pills lets just hope they are, not sure if I have to have another CTscan first.
Thanks to everyone for their support i'll keep you posted
Love and hugs to all Sharon x x x
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Post by Deanne Jenkyns on Feb 11, 2008 21:59:06 GMT 1
Hi Sharon, Hope all goes well on wed. I should imagine they will just give you the pills and then scan you at a later date. Will be keeping everything crossed that they work their magic!
Deanne xxx
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duane
New Member
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Post by duane on Feb 13, 2008 10:01:36 GMT 1
Hi Sharon, Angela only has the normal x-rays at the moment and while these are showing an improvement we don't want CT scans. All the best for Sheffield later, let us know the outcome. Take Care Duane x
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aditi
New Member
Posts: 3
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Post by aditi on Feb 14, 2008 0:53:19 GMT 1
Hello, This is a very useful forum.Congratulations. My mum was diagnosed as NSCLC August 2007 very similar story to yours,initial diagnosis?sarcoid.Anyway she had Gemcitabine and carboplatin -3 cycles in India and is now on Tarceva 150mg(all self funded and partly medical insurance) She is in Newcastle now with me to stay for a good few months.The rashes and diarrhoea are terrible.Also has a lot of hair loss .Its sad to see her like this.However she is a very positive person.We would like to consult an oncologist here privately...do you know anyone good? Any other useful contacts for improving the quality of life with this .Please help. My tel no.- 01912851105 Mrs.Desai
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Post by wendy on Feb 14, 2008 10:27:15 GMT 1
Hi there When my rash was really bad my oncologist advised me to stop taking the tarceva for a week to give my body a rest, I then started a reduced dose which I tolerated better. The skin problem I coped with but treated myself to some nice goodies, as I thought I deserved it! I used some Crabtree and Evelyn products which I bought online. Their skin range was good and gentle on my face whilst their less perfumed body range helped elsewhere, (my skin got really dry and flaky) Their body creams I found very beneficial as they can be put on straight after a shower without having to towel down (sounds strange but worked). The Neutrogena Norwegian Formula supplied by the hospital I found very heavy and greasy, a friend of mine used another product which she bought from Boots but can'r remember at this point what it was, i'll find out. Hope this might help someone out there. Big hugs and love to everyone wendyxx
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Post by jljenkyns on Feb 14, 2008 14:20:39 GMT 1
Hi Aditi
just in case you forget what i told you.
for the rash - Doxecycline
Avastin
Alimta
jim
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Post by shazbok on Feb 14, 2008 23:32:35 GMT 1
Hi everyone, sorry not been on replying to all but really having to catch up at work as it is year end for our 2 companies and the dreaded VAT!!!! As I guessed after asking my onc i have to have a CT scan first As soon as got date can arrange to go to Sheffield for prescription. On a lighter note 'rehersals' for fashion show causing great merriment in our household have been renamed Claudia - just wish had her figure!! A good cream for v v dry skin is Aveeno they also do a lotion and bath/shower oil, I have a friend with severe eczema and her dermatologist prescribed it but can buy it over the counter now.
well love and hugs to all
Sharon x x x
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Post by Deanne Jenkyns on Feb 16, 2008 11:42:50 GMT 1
Hi Sharon AKA Claudia , sorry for the delay, not too well at the moment, on the mend though Hope the CT scan appointment comes through soon and you are soon on the Tarceva. You seem to be keeping very busy! Jimmy, has used Aveeno cream among others and I have heard of other people recommending it, it works well for some people. Jimmy has tried a number of different creams and has found loreal for men suits him, keeps saying because he's worth it Take care, and keep us informed. Deanne xxx
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Post by shazbok on Feb 16, 2008 14:55:16 GMT 1
Hi Deanne real sorry you not been too well but glad you are on the mend, as for Jimmy's comment on l'oreal for men - well of course I wouldn't of expected any other answer- I live in a house ful of men!! As for keeping busy it's always been the same so why changehabit of a lifetime Love N hugs x x
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Post by Deanne Jenkyns on Feb 16, 2008 16:01:34 GMT 1
OOOOOOOOOOO just noticed it's your Birthday ;D ;D ;D Happy Birthday to you! Hope you have a nice day!
Love Deanne xxx
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Post by jljenkyns on Feb 16, 2008 18:24:47 GMT 1
Happy Biirhday from me also seeing as how Deanne forgot to add my name!!!! lmao
love jim xx
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Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Feb 17, 2008 19:19:14 GMT 1
Hi Sharon, Hope you had a lovely birthday hun Love Vicky xxxxx
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Post by shazbok on Feb 25, 2008 14:25:23 GMT 1
Hi all Thank you for birthday wishes had very enjoyable and busy weekend, soon back to normal though we went to Weston Park in Sheffield on Wednesday to see onc and collect Tarceva tabs as PCT says have to get them from there can prescribe them in Doncaster if on a trial!!! Not a real prob going Sheffield just nightmare for parking there is none! Will be starting tarceva tablets in the morning as going for CT scan and X rays this evening for base lines, so will keep you all posted on the progress.
Hope everyone keeping well
love & hugs to you all Sharon x xx
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