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Post by Deanne Jenkyns on Mar 27, 2007 15:14:27 GMT 1
Hi, - Are you fighting for the right to use this drug through the NHS?
- Are you having to self fund?
- Did you win the right to use this drug through the NHS?
- Do you know of anyone who has won the right to use this drug through the NHS?
- Have you asked for this drug and your oncologist has said you may benefit from it but he cannot give it to you?
- Have you ever had to fight for the use of any cancer fighting drug and won the right to use it?
Thanks Deanne
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lynda
New Member
Posts: 34
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Post by lynda on Apr 9, 2007 21:26:50 GMT 1
Hi, My name is Lynda and my husband Doug was diagnosed with NSCLC in February this year.After 2 cycles of chemotherapy we were informed that although the main tumour had shrunk slightly,the cells in the lymph nodes were still growing.They are starting a new chemo this week which we were told has only a 10% success rate.The oncologist then asked Doug if he was still smoking,to which he answered truthfully that he wasn't.She said that if he had still been smoking at least 10 a day he could have been accepted for a trial with tarceva!What is wrong with this NHS? Lynda
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Post by Deanne Jenkyns on Apr 9, 2007 21:48:04 GMT 1
Dear Lynda, I have to say I was shocked and horrified when I read what you said. It seems now you have to smoke to get Tarceva on the NHS. I would have thought they would be encouraging LC sufferers not to smoke! I really feel for you both because We know what it's like to be in your position. It was lovely talking to you on the phone. I will send you all the information I have what I think may be of some use to you. I don't know if you seen the information my husband posted about buying Tarceva outside the UK. It is cheaper in Canada only trouble is it takes longer to arrive. I still cannot believe how much you were quoted. It is just awful that we have to worry about finding funds for this on top of everything else. Keep me posted and take care.
Deanne x
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Post by Deanne Jenkyns on Apr 9, 2007 22:32:11 GMT 1
Hi Lynda, hope you got the info I mailed accross to you and that it helps you in some way.
Take care Deanne x
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lynda
New Member
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Post by lynda on Apr 10, 2007 8:11:09 GMT 1
Thanks Deanne,received information.I intend to email our MP today.Will keep you posted. Lynda
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Post by Deanne Jenkyns on Apr 10, 2007 14:16:07 GMT 1
Your Welcome Lynda, anything else you think I may be able to help you with or any questions just ask. I spoke with the paper again this am and they are going to do another article on the website so thats good saying as they did not add the link. Someone else has been in touch with the paper asking for my email the journalist is going to forward it to me later. They also said Jimmy had small cell lung cancer in the article and he has non small cell, so they are going to correct that. Hope Doug is doing OK today, if you ever need a chat about anything you have my number.
Take care Deanne x
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lynda
New Member
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Post by lynda on Apr 12, 2007 22:48:20 GMT 1
Hi Deanne, Doug starts his new chemo tomorrow but I have my doubts as to wether he is well enough to have it.He has been really poorly this week and he looks dreadful.I read Jimmy's post and realised we aren't the only ones whose "friends" have deserted us.It really infuriates me and I will be upsetting a few of them before very long.I emailed our MP and received a reply asking for our address.so we'll see what he comes back with.I'm also going to write to Doug's employers to tell them how disgusted I am with them.He's been there 33 years and no one has been to see him or enquired if he needs help with anything.Our district nurse suggested approaching them to fund tarceva but I can't see that happening!I'll let you know how he is after chemo.Our daughter cut his hair with clippers today in readiness for him losing it. Lynda
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Post by Deanne Jenkyns on Apr 12, 2007 23:03:22 GMT 1
Dear Lynda, I am sorry that Dave is unwell. I hope he perks up and is able to go ahead with treatment. It's so hard seeing them like this isn't it (((((hugs))))) You can feel very isolated going though this Lynda. We have found that people exaggerate things greatly too. when we see people they looked shocked that he looks so well because they have seen somebody who painted a very grim picture and had him in his box! It infuriates me but Jimmy always see's the funny side...just as well! Let me know when you hear back from your MP and let me know about how you get on tomorrow. will be thinking of you.
Take care Deanne x
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gavin
New Member
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Post by gavin on Jul 10, 2007 12:19:31 GMT 1
Hi, I'm new the board.
I've spent the weekend reading all the information on here - what an eye opener! Many, many thanks to Deanne and Jim for sharing their info. It’s given myself and my family a big boost. My father was diagnosed with lung cancer last November, virtually 12 months to the day, after my mum died of a heart attack – what an anniversary.
I think my dad’s condition is classified as “stage 2” where there's a small primary tumour in the right lung with a larger tumour in the lymph system.
The treatment he's had to date:
* 4 cycles of gem/carbo chemo which did not shrink either tumour. My dad didn’t have any side effects either. (Dec-Mar)
* He's had the maximum radiotherapy in 2 doses - but only to the tumour in the lymph system. (Apr)
He’s about to go for a CT scan in the next week, with results being available for discussion early August.
I brought up the topic of Tarceva with my Dad’s consultant a couple of times now, after being told about it by a fellow patient.
The first time, the consultant stated that the Cancer Centre had been approached for a Tarceva trial later in the year and that my father was a suitable and ideal candidate.
I brought it up again recently, and in the presence of his nursing staff, the consultant stated that Tarceva only really works with Asian people, females or non-smokers, and obviously my father didn’t fit any category – so we were gutted.
We’re planning to opt for the private purchase and see if the consultant will still see him on the NHS.
Has anyone else heard of these generalisations or any reason why my father shouldn’t be suitable?
Many thanks, Gavin.
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Post by dtay on Jul 10, 2007 14:07:28 GMT 1
Hi Gavin, My Dad was told originally that Tarceva wouldnt be suitable for him (they quoted the Asian non-smoking famale stuff to us too !!) - we changed his hospitals due to him moving in with my sister and they were happy to give it to him on a private script. We still see his Onc on NHS tho. Chemo didnt work for my Dad, but Tarceva has given his good quality of life and his disease is stable at the minute. Sometimes you have to be quite pushy to get what you want !! Hope all goes well for your dad. Regards Dawn
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gavin
New Member
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Post by gavin on Jul 10, 2007 14:20:18 GMT 1
Hi Dawn,
Thanks for responding so quickly.
I've not read anything about this generalisation - do you know how true this is?
May I ask how long your father has been on Tarceva?
Thanks, Gavin.
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Post by jljenkyns on Jul 10, 2007 14:28:38 GMT 1
Hi Gavin
Welcome to the site it is a pity u are on here at all. Stage 2diagnosed fairly early which is a good thing i was diagnose at stage 4 in april of last year. I suggest you get your oncologist to read my scan results what he said is supposed to be the best for responding to Tarceva is right but as you can see the posts on the site the range of people responding is quite varied and good responses. I would suggest that while your dad is at stage 2 now is an ideal time to start taking Tarceva . As for the oncologist seeing your dad on the NHs if you buy private YES you canmix private and NHS they will probably still do the scans . bloods etcno reason why they should not. Dont give up on the Tarceva.fight for what you want as we have had todo. We are now submitting or 3rd appeal to try and get the PCT to fund the drug based on the clinical evidence.
Good Luck
Jim
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Post by dtay on Jul 10, 2007 14:39:18 GMT 1
Hi Gavin My Dad has been on Tarceva about 6 months now. Before he started on it they gave him 2 months to live - he has a large tumour in left lung and nodule in right (he was a stage 2 before progression during chemo and now is stage iv) - so as far as we are concerned every day is a blessing. He was ill before he started on it - breathless and very weak, he picked up after about a week on Tarceva. There have been studies that indicate that the people who benefit from Tarceva most all (improved survival rate, better quality of life, tumour shrinkage) fit a certain criteria -Cancer is Adenocarcinoma,patient is female,Asian,Non-Smoker. I dont know how true it is but I have done alot of research into Lung Cancer recently and have come across these studies on reputable medical sites -- however, saying all that, as I said earlier, my Dad doesnt fit into that at all - he has squamous cell and is an ex-smoker (gave up 30 yrs ago). We had to push quite hard to get a private script for Tarceva - we suggested it to Onc, and we were met with resistance at first, but we presented a case to Dads Docs from some of the research we had done, and they agreed that it might be of some benefit - they said if after 2 months Dad showed no signs of improvement they would stop it. The problem in Uk is that many Docs dont know very much about Tarceva. Jimmy (Deanne's husband) has just had a CT scan after a few months on Tarceva and his tumour has shrunk and he feels 'normal' again. Many people on this site will be able to give you lots of help - the Tarceva website(Roche) has alot of info on too. Check out some American sites (big fans of tarceva) - Lung Cancer Support Community and OncTalk(link on front page of this site) -- both of these sites can be of great help. If you have anymore questions let me know Dawn
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Post by norfolkbirdie on Jul 10, 2007 15:20:03 GMT 1
Hi Gavin My husband is of the same group as Dawns' dad. Squamous cell, ex smoker he was originally a stage 2 but after recurrence he is now stage 4. He had chemo last year and radiotherapy for 20 sessions in Jan this year, didn't work.Tarceva appears to have worked well for him and got rid of 2 tumours in his liver completely! He has been on it for 6 months.We have seen some slight progression in his disease but he is still taking Tarceva. As the others have said, sadly you learn that the Docs just don't have enough knowledge of this drug and it is up to you to do the research and present them with what you want and why. You are entitled to get the drug on private prescription and still be entitled to support from NHS for other tests etc... don't let them bully you into paying for everything privately, they seem to sometimes use this as a threat. Good luck and as the others have said we are all here to help each other in any way we can. Ros
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Post by Deanne Jenkyns on Jul 10, 2007 15:24:29 GMT 1
Dear Gavin, I am pleased that you found this site. I don't know if you have read my husbands CT results after only a short time on Tarceva. No disrespect to your Dads oncologist but I think they have very little knowledge of Tarceva in this country because they have not patients on it. Research does show that the criteria your onc mentioned do well on Tarceva but other patients do equally as well and in my opinion should at least be given a chance. Goodluck!
Deanne x
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gavin
New Member
Posts: 8
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Post by gavin on Jul 10, 2007 20:09:57 GMT 1
Many thanks to all who've responded.
I've printed out everyone's replies and shown them to my dad this evening. He's the most upbeat I've seen him in months.
Having spent all day reading about Tarceva on the net, why on earth would any English or Welsh based Onc have any reason to knock back a private funded script?
Surely these guys have their fingers on the pulse.
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Post by dtay on Jul 10, 2007 20:14:23 GMT 1
One would like to think so Gavin - I agree with everyone here, because tarceva isnt often prescribed here Oncologists have little knowlegde about its effects and affects, and often, I'm afraid, it is down to us to give them a little bit of guidance !!! What type of LC does your Dad have ? I hope he is doing ok and that he goes from strength to strength. Keep fighting for him. Dawn x
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Post by Deanne Jenkyns on Jul 10, 2007 20:30:51 GMT 1
Hi Gavin, I am pleased your Dad is feeling more upbeat since reading the replies. It is unfortunate that we have to fight for approved drugs. The bottom line is all lung cancer patients should have rapid access to up to date treatments and the fact they are being withheld is simply outrageous. We have had to do all our own research about different treatments and have had to fight every step of the way. I have challenged everything the oncologist has said and most of the time he is supportive but somewhat reluctant to fight our case with the PCT. When we approached him about Tarceva he said he thought Jimmy would be a good candidate but we would have to pay. We raised the funds and I insisted that he wrote to the PCT on our behalf, contacted the press etc and as you can see set up this website. He put us in touch with health care at home and we were quoted £1741.00 per month. I know that other patients are being charged more than this. Jimmy is still getting follow up scans etc but other hospitals refuse to do this when they start private care! If you want any help or advice we will do our best to help you ...just ask. I said before that oncologists here have very little knowledge about targeted therapies like Tarceva because they have very little experience of patients using it. Jimmy's oncologist told him to come off it all together because of the rash! Rash is actually associated with good response, when we challenged him about this he put his hands up and said he knew nothing about it because he had no patients on it! Thank goodness we went against him, otherwise goodness know where we would be now!
Goodluck! Deanne x
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gavin
New Member
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Post by gavin on Jul 10, 2007 20:33:09 GMT 1
I don't know the exact type.
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Post by dtay on Jul 10, 2007 20:43:09 GMT 1
The good thing is that advances in treatments are being made all the time - new treatments are on the horizon and they even include vaccines. As others have said, your Dads cancer has been caught at a fairly early stage and that is always great news.
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Post by jljenkyns on Jul 10, 2007 21:26:42 GMT 1
Hi Gavin
Nice to hear your dad is feeling upbeat. it is amazing what a bit of hope can do! keep up the fight for the drug push them all the way and as others have said there are many new drugs becoming available and we will fight for them all the way if not made available on the Nhs.
jim
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gavin
New Member
Posts: 8
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Post by gavin on Jul 19, 2007 9:21:57 GMT 1
Sorry for the delay in responding, but it’s difficult to gain access to my Dad’s Onc as he services a number of cancer centres. We have to go through one of his assistants based in our local hospital. I spoke at length with the assistant last week, and she’s put our case to the Onc.
The Onc has agreed in principle to the private script / NHS care suggestion - though he’s completely lost to how this could work as he’s never been approached to do this before.
He’s asked for a meeting with us in the next week to discuss “the logistics”.
I’ve got the feeling that the meeting will have to be driven by us – so I’ll have to get the approach right. I spoke to the assistant about the “healthcare at home” company and she knew nothing of them. She knew of the CanadaDrugs.com pharmacy, as this was in a Guardian story.
I’d like to get my Dad onto this treatment as soon as I can, so I think I’d read in a previous post somewhere, that it’s best to source in the first instance from “healthcare at home” as the Tarceva gets delivered quicker, and then start sourcing from the cheaper CanadaDrugs.com – is this right?
Does anyone have any info about the “healthcare at home” company? Contact name / contact address / telephone number? Is this the company based in Staffordshire?
Is there anything else I need to be aware of?
Once again, many thanks to all of you, Gavin.
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Post by Deanne Jenkyns on Jul 19, 2007 11:19:08 GMT 1
hi Gavin, here is the address and tel number Healthcare at home ltd Fifth Avenue, Centrum 100 Burton-upon-trent Staffordshire DE14 2WS
TEL: 08706001540 FAX: 08706001541
We were charged total cost £1740.40 zero VAT
Goodluck Gavin Deanne x
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Post by dtay on Jul 19, 2007 18:57:37 GMT 1
Hope everything works out well for your Dad - give him a hug from me x
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Post by stayingpositive on Sept 18, 2009 21:57:48 GMT 1
Hello, I am currently fighting the Ealing PCT to get my husband funded for Tarceva as third line treatment. Has anyone had ANY success in getting Tarceva from ANY PCTs in London??!! I know that NICE has approved Tarceva finally for use but only as SECOND LINE TREATMENT.
I would be extremely grateful if anyone could post if they have been successful if getting Tarceva from a PCT in London. Many thanks.
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