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Post by daisey on Jan 10, 2008 16:56:28 GMT 1
Hi all. My husband has NSCLC. After chemo and radiotherapy have failed we have managed to get tarceva via. our medical insurance company PPP. I have signed the Government petition and have emailed all our friends to do the same plus email all of their friends likewise! Quite anxious about the side affects and good to find this site! Not so alone! Daisey.
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Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Jan 10, 2008 17:28:43 GMT 1
Hi Daisey,
Huge welcome to this site. Deanne (site founder) is sunny herself in the caribbean, but her and Jimmy will be back on the 20th, she is very supportive and full of plenty of useful information and knowledge.
I am so sorry to hear that your husband has NSCLC and that the chemo and radiotherapy didn't work ((hugs)) Tarceva is very effective it seems so i hope that it improves things for your husband.
Thinking of you both, and you are most certainly not alone.
Love and ((hugs))
Vicky xxxxxx
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Post by dtay on Jan 10, 2008 23:09:20 GMT 1
Hi, and as Vicky says - Welcome to this wonderful site. My Dad had very few side effects on Tarceva - the worst was the rash but he coped no probs. Dawn x
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Post by daisey on Jan 11, 2008 19:21:12 GMT 1
Thanks for the welcome. Had the internet not existed I would never have found out about Tarceva. My GP had never heard of it! The Oncologist was initially very reluctant to go this road and painted a very black picture of the side affects. In the end I think he realised that we were NOT going to give in and agreed! My husband starts this on Monday so I will let folk know hows he gets on. Daisey xxxx
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Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Jan 13, 2008 19:52:36 GMT 1
Hi Daisey,
Just wanted you to know i'm thinking about you and your husband.. good luck for starting the tarceva tomorrow.
I don't know too much about the side effects of this drug but i am sure someone will be able to offer you some advice.
Love Vicky xxxxxxx
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Post by thistle on Oct 1, 2008 21:00:56 GMT 1
hello daisey, vickey, deanne and all the members of this forum. I was given the website address yesterday by Christine at Roy Castle in Scotland. My husband is due to start the drug tomorrow. We live in a rural part of norfolk and I found out about the drug, the petition etc when he was diagnosed last june after a brain tumour and it was found that he had nsclc stage 4 and given about 6 - 9 months to live. Paul is 44 and very fit. He has never smoked and had run the london marathon as a younger man. He was teaching in school two weeks up until he was hospitalised last year for 3 months. Radiotherapy to his head really took it out of him, ten sessions for pailliative purposes and he lost all his hair. He started two cycles of gemcarb chemotherapy last october and november but nothing happened albeit he was very very sick. In early march he wanted to go on a trip to Iona a spiritaul island in Scotland and when up there he started to cough up bright red blood, it was terrifying for all concerned. He was hospitalised in Mull and then Oban and then we got home pretty quicky and we went to Addenbrookes hospital in Cambridge for 5 sessions of radiotherapy to the lungs to stop the bleading which shrunk the tumour and sealed it. We were told by our clinician last week that the tumour is now growing again and he could take the drug or see how things went. He was confused at the consultation and decided to leave things as they were. I don' think he realised the implication of turning down this much sought after drug but the brain tumour has affected his memory and clear thinking. I talked it over with him in depth and he has now agreed to try the drug at least which I am much happier about as he has a very bad cough at the moment that has not responded to strong antibiotics or codeine linctus. He is also very tired a lot of the time so cannot enjoy his reading, walking the dogs and generally getting out and about. I would be so grateful for anybody to contact me about the sort of things to expect and when the side affects may start. I am so grateful to everyone for being part of this helpline and for allowing me to join in. Kimx
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duane
New Member
Posts: 44
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Post by duane on Oct 1, 2008 21:30:55 GMT 1
Hi Kim, sorry you have had to find this fantastic site. My wife, Ange, is a 42 yo none smoking fitness fanatic with stage 4 NSCLC. She has been on Tarceva for just over a year after gemcarb failed. The rash is the worst side effect but is does carm down after a few months, Ange uses simple derma moisturiser at the moment but has tried almost every product on the market. She also gets tired quicker since being on tarceva but apart from that she's living a normal life, as I write this she's on a girls night out in fact. I hope Paul has great success with this remarkable drug. Take Care Duane xx
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Post by jljenkyns on Oct 2, 2008 12:44:45 GMT 1
Hi Kim
I also have been on tarceva for 18 months now and leading quite a normal life, going on holiday back to work , if it was not for Tarceva who knows where i would be today .As duane says use moisturiser but also ask your onc.doctor for docecycline this does minimse the itchiness and the rash.
jim
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Post by thistle on Oct 3, 2008 11:45:02 GMT 1
Thank you both duane and Jim for your replies to my new posting. We went to the hospital yesterday for paul to sign the consent form but the drug was not available. They are going to ring me early next week so that I can go and pick it up from the hospital for paul to start. I think he wants to start it early in the morning so I am hoping that it will be tuesday or wednesday. They gave us a freebie pack of neutrogena products for the rash courtesty of the drug company roche but I did mention to the clinician that I had heard of steroid cream being needed. I think its all very new to them there. Anyway paul had put on a few pounds as he is now on his own concocted diet of mr kipling apple pies. I know they are probably about the worst thing to eat and when I see how much trouble your wife goes to Jim with all your nutritious drinks but this is what he wants and who am I to deny it? His cough is worse so probably thats why he is not wanting to eat anything dry, he used to enjoy crisps, nuts et. I am hoping that the cough will go when he takes the drug. She told us that as a rule of thumb that the worse the side effects the better the drug is doing but not to be too alarmed if there are no side effects? Anyway they took blood from him and want him to be seen again in clinic in three weeks time. A scan is booked for early december which they will obviously compare with his most recent one taken two weeks ago. Due to all the operations he has had in his brain, two shunts fitted, one removed as well as the debulking of the tumour paul has now become needle phobic so yesterday upset him a lot. I just don' t want to see him in any more pain. So glad you can still work Jim, they retired paul from teaching this autumn, he loved the job so much. Duane so glad your wife can get out and about, Paul is not one for staying up late, think 8pm has been his latest although he is an early riser. I will keep posting to let you know how he is getting on, I have shown him this website and the tarceva diaries and hopefully he will post too. Thanks for your help and support, Kimx
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Post by phillipa on Oct 3, 2008 21:29:45 GMT 1
Thistle I am so glad you have found us. Kent has been orescribed hydrocortisone cream to help with the rash as welol as doxecycline. He is very tired of an evening, he returned to work three weeks after the discovery of a pancreatic tumour, and having two stents inserted to drain the bile ducts. Considering everything he is doing well,, apart from massive weight loss. getting the nutritional food and supplements into him has been an uphill battle, but today has been one of the good days.
The rash, what a misnomer that is, he is covered in it, but tomorrow I am going to exfoliate his back and he has decided to go for the bearded man look for a while. I do hope the Tarceva helps your husband. you will get so much support from everyone on this forum, so post up, warts and someone will come along to help you.
Jimmy is our inspiration and Deanne has been here for all of us.
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Post by thistle on Oct 3, 2008 22:59:38 GMT 1
Hello Phillipa, Thanks for your reply and welcome it means a lot, I get very lonely just here on my own , however I go to church and believe in Jesus and feel that only God knows the answers. From my faith which helped me through my mother's death in 2001 from vulvar cancer / lung cancer I know that God will not give me too much to cope with in a day so as to overwhelm me and although I don't understand why this is happening to us at the moment, when I am ready I believe He will reveal the truth. So many people have been inspired by Paul, its like the whole town is watching and waiting to see what happens next. I have a lot of hope in this tarceva but perhaps too much. I am so scared of setting myself up for a fall. I suffer from depression and can get very low and have had two nervous breakdowns in the past so its a real miracle that I have managed to care for paul for alll these months, the old me would just curl up in a ball with a handful of pills and booze! I think we are given an inner stength to cope with these things and I know a lot of people have been keeping us in their prayers and you can feel yourself being uplifted by this at times. I am hoping that Paul gets the drug on monday so that he can take it beginning tuesday morning. He goes to a local day hospice on a tuesday from 10 - 3pm. He hated it at first, particularly the word hospice but now looks forward to it. What has kept him going is that he has written a book, its very controversial/fundamentalist christian but its his beliefs. He has a website that he blogs on under the name of Samson under end times, if you are interested you could look at it on www.hopeingod.co.uk . If its not your cup of tea thats fine, as I said its helped him and that was the purpose. He needs to have goals to aim for. He has set his heart on walking along Hadrians wall next May. He's bought all the kit and booked the b and b's!! When paul was rushed into hospital on june 1st 2007 with double vision and staggering, I popped home to get his overnight bag. In that short hour they had transferred him from a and e to the medical assessment ward where they told him on his own he had a brain tumour and would have to go to Addenbrookes in Cambridge for life and death neaurosurgery. His first instint was to pray for me that I would be o.k. if he should die and he said that God spoke to him and told him he was not going to die. He has kept going since that time but I can see deterioration in his body shape, weight and behaviour. I never had a message from God but paul always just told me to wait on the Lord and that is what I have been doing since. Sometimes its such a strain trying to remain positive for paul, wondering if his message was for real, not wanting to deny him his faith but also listening to the medics and their grim prognosis. I hope that I will get to know you all gadually on the site, I think in different ways we can all help each other. I hope in some way I can help you too sometime. I hope you both have a good weekend. Love Kimxx
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