Mouth Cancer Foundation, Mouth Cancer Awareness

donate online
 
 Return to main web site (leave the Online Support Group)   |   To support the Mouth Cancer Foundation, you can now make online donations!
Page 1 2 
Go
New
Find
Notify
Tools
Reply
  
Cancer drug lottery
 Login/Join 
Posted
A report in today's newspaper about head and neck cancer patients in England and Wales being denied erbitux (cetuximab) by NICE. Of course, this drug is being approved in Scotland!
The article states that erbitux plus RT increases survival rates from 29 months to an average of 49 months.
Having survived almost 29 months so far.since my RT finished I don't have long left!!
As always our lives are being weighed up against the cost of treatment. A disgrace!

Tony K
 
Posts: 133 | Location: Leicester | Registered: 02 December 2005Reply With QuoteReport This Post
Picture of David and Susan
Posted Hide Post
I asked my consultant about this and he dismissed it i offered to pay for this

Can this drug be given after Rt anyone know
Dave
 
Posts: 508 | Location: Co Durham | Registered: 14 March 2007Reply With QuoteReport This Post
Picture of Chelle
Posted Hide Post
I'ts disgusting!
I heard about this on friday from Red Door publications. They wanted to know if id be happy to talk to any journalists about it! & of course i agreed.
The drug is used in the states, it's used in Europe & Scotland yet it's not been approved here! where's the logic??
& why is it Herceptin was approved for breast cancer? Advancements in H&N cancer are few and far between so surely any drug that prolongs life should be clutched at with both hands.
I know if my cancer ever reoccured i couldn't go through chemo again - too much damage has been left from before!
It IS disgraceful! Soapbox

P.S. Did you see Dr.Joshi in The Mirror?

This message has been edited. Last edited by: Chelle,


-~*Great spirits have always encountered violent opposition from mediocre minds*~-
...Albert Einstein
 
Posts: 794 | Location: Hastings, UK | Registered: 01 March 2007Reply With QuoteReport This Post
Picture of Dr Vinod K Joshi
Posted Hide Post
Why, I see myself in the mirror everyday but I didn't think others could see me too! Eeker


Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.

"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
 
Posts: 3779 | Location: St Luke's Hospital, Bradford and Pinderfields Hospital, Wakefield | Registered: 14 December 2002Reply With QuoteReport This Post
Picture of Dr Vinod K Joshi
Posted Hide Post
News Coverage today:
The Mirror: DOC FURY AT CANCER DRUG BAN
The Daily Mail: Cancer sufferers to be denied drug on NHS
The Telegraph: NHS cancer patients are denied new drug


Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.

"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
 
Posts: 3779 | Location: St Luke's Hospital, Bradford and Pinderfields Hospital, Wakefield | Registered: 14 December 2002Reply With QuoteReport This Post
Picture of Jenni
Posted Hide Post
If we are all angry at this deciscion, shall we start a petition on the 10 downing street site? Is anybody feeling literate enough to put their feelings into words?
http://petitions.pm.gov.uk/
 
Posts: 247 | Location: Fareham, Hampshire | Registered: 13 October 2006Reply With QuoteReport This Post
Posted Hide Post
Maybe we should all ask to be treated in Scotland! Can we do this?

Does Erbitux give a patient a greater chance of cancer not reoccuring?

When Tony was diagnosed everything happened so quickly - diagnosed on Thursday, neck dissection following Tuesday. I asked at the time if there was any treatment that would be beneficial to him, but not available on the NHS as we would be willing to pay. The answer was no. If this turns out not to be the case I will feel really let down and cheated.

Kate
 
Posts: 222 | Location: Barton upon Humber | Registered: 26 March 2007Reply With QuoteReport This Post
Posted Hide Post
P.S. Dr Joshi was quoted in "The Times"
Kate

This message has been edited. Last edited by: Dr Vinod K Joshi,
 
Posts: 222 | Location: Barton upon Humber | Registered: 26 March 2007Reply With QuoteReport This Post
Picture of angiebaby
Posted Hide Post
Even if you were able to pay for the drug yourself, you would then have to pay for all/any further treatment or any other drug you may require. That would include follow ups, any hospitalisation, surgery right down to a wound dressing, plus god forbid, any reoccurance treatment.

In which case, before this, Bill hasn’t used the NHS since can’t remember when. Ergo, if we are able to finance all future treatments, please can we have all his NI contributions back please?

Could we take this to the court of human rights do you think?

Angie
 
Posts: 567 | Location: Congleton, Cheshire | Registered: 29 March 2007Reply With QuoteReport This Post
Posted Hide Post
I'm in the US and was given Erbitux during my treatment. My understanding is that it has been approved for mouth tumors for about two years here, after going through the normal clinical studies to determine it was effective and to find side effects.

I received the Erbitux, along with two other chemotherapy drugs, for 7 weeks. And then I was given radiation along with the chemotherapy for another 7 weeks. The Erbitux shrinks the tumor and weakens it to the radiation treatment. So far so good for me, but I've only just completed treatment 3 months ago. I'm now due for a PET Scan, and will feel a little better if that checks out well.
 
Posts: 8 | Location: South Jersey, USA | Registered: 16 January 2007Reply With QuoteReport This Post
Posted Hide Post
Hi Ron

Let me know how your scan goes - fingers crossed. I am also interested in your case as you have been given this drug Erbitux which still has not been approved hear in the UK.

Terrijane


Terrijane Burley
 
Posts: 6 | Location: West Wickham, Kent | Registered: 15 May 2007Reply With QuoteReport This Post
Picture of Dr Vinod K Joshi
Posted Hide Post
quote:

MEDIA ALERT – MOUTH CANCER DRUG MAY SOON BE AVAILABLE ON NHS
4th October 2007


Today, the Mouth Cancer Foundation came a step closer to making sure all Mouth Cancer patients have access to a new drug, currently not widely available on the NHS. The drug in question is called ‘Cetuximab’ and is a new cancer treatment available in Scotland since July 2006, but not England and Wales at present.

It is hoped that cetuximab in combination with radiotherapy can be used as an alternative in Mouth cancer patients for whom chemoradiotheraphy is in appropriate.

The charity successfully convinced the Appeal Panel of the National Institute for Health and Clinical Excellence (NICE) to ask its Appraisal Committee’s to reconsider its appraisal decision to ban the drug for head and neck cancer patients in England and Wales. The appraisal has now been returned to the Committee.
(click above link for pdf of the Result of the Appeal)

The Founder of the Mouth Cancer Foundation, Dr Vinod K Joshi, explained that the charity represented the views of its members constituting a wide population of patients with mouth cancer.

Four members of the Mouth Cancer Foundation, Mrs Brenda Brady, Mr John Spencer, Mrs Christine Piff and Mr Mike Cummins provided the Appeal Panel with personal accounts of the suffering caused by head and neck cancer and of the very unpleasant nature of their treatments. They stressed that it was important for the Institute to take patients’ views into account.

This the Appeal Panel did, and the debate centred on the efficacy of cetuximab. Currently both carboplatin and cisplatin are used for chemoradiotheraphy in the United Kingdom with horrific side effects. Carboplatin had fewer adverse effects than cisplatin, but was more likely to suppress the bone-marrow. Therefore, cisplatin was the preferred treatment. The Appraisal Committee accepted that cetuximab plus radiotherapy caused less severe adverse effects than either of the platinum-based chemoradiotherapy regimens.

The Appeal Panel considered that the Appraisal Committee had not given appropriate consideration to the issue of whether a chemoradiotherapy regimen of carboplatin alone was as effective as cisplatin, or that a regimen consisting of carboplatin plus fluorouracil would necessarily be suitable for the population identified in the decision problem in whom cisplatin was contra-indicated. The Panel found that, as a result, the Committee's conclusions were perverse in proposing a ‘carboplatin-based’ regimen for those in whom cisplatin was contra-indicated.

The Founder of the Mouth Cancer Foundation, Dr Vinod Joshi says “The Mouth Cancer Foundation is delighted that the decision has been referred back the Final Appraisal Determination to the Committee for reconsideration”.

Interviews Available: Founder of the Mouth Cancer Foundation Dr Vinod Joshi

To set up an interview please call Media Ambitions on 020 7482 3600



Thanks to all who supported us.

Best wishes
Vinod Coffee

This message has been edited. Last edited by: Dr Vinod K Joshi,


Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.

"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
 
Posts: 3779 | Location: St Luke's Hospital, Bradford and Pinderfields Hospital, Wakefield | Registered: 14 December 2002Reply With QuoteReport This Post
Picture of Jenni
Posted Hide Post
Congratulations Dr J, and all the MCF members who spoke at the appeal.

Jenni
 
Posts: 247 | Location: Fareham, Hampshire | Registered: 13 October 2006Reply With QuoteReport This Post
Picture of cookey
Posted Hide Post
Well done all xx


Love liz

Never take your eye off the ball it may just smack you in the mouth
 
Posts: 669 | Location: Harewood West Yorkshire | Registered: 19 February 2007Reply With QuoteReport This Post
Picture of angiebaby
Posted Hide Post
Good job all!
 
Posts: 567 | Location: Congleton, Cheshire | Registered: 29 March 2007Reply With QuoteReport This Post
  Powered by Social Strata Page 1 2  
 


Mouth Cancer Foundation is a registered charity No. 1109298.
Registered as a company limited by guarantee in England & Wales No. 5154295.
Copyright © 2002-2009 Dr Vinod K Joshi BDS DRDRCS FDSRCPS. All Rights Reserved.