Cancer Care..Know your rights!

[Deanne Jenkyns]

CANCER CARE...KNOW YOUR RIGHTS

Up to 20 advanced anti-cancer agents could
become available over the next 18 months,

some costing £100,000 per patient

More than a dozen such drugs have already
been licensed for use, but even so are
unavailable to NHS patients

These licensed drugs are available to those
who pay or, in most cases, medically insured
patients, including WPA members

Misplaced doubts surround the matter of
private patients receiving NHS care

Patients are entitled to mix and match – hop
between private and NHS treatment

Patients can buy their own drugs and have
them administered by the NHS
This article is well worth a read;

www.wpa.org.uk/literature/06529_WPA_cancer_newsletter.pdf


Deanne
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[sharon]

My Husband Martyn age 48 diagnosed with nsclc august 06 told him inoperable and incurable, started chemo september finished december excellent scan results, tumors shrunk down. Started Tarceva two months ago, rash became too much, he became toxic and had to have a weeks break. Back on dose of 100mg (Reduced from 150) and just waiting to see how he gets on!!! Bupa funding Tarceva and all medical bills.

[jljenkyns]

Hi Sharon

I am sure martyn will be much better on the 100mg Tarceva , like him the rash beacame increasingly frustrating but since using anti-histimanes, steroids and calamine lotion mine have practically gone altogether now so go luck to you both.

[dtay]

Hi Sharon - I think you have to find a happy medium with the dose so that the rash can be tolerated. Hope Martyn finds the lower dose is easier for him
Dawn

[Deanne Jenkyns]

Hi Sharon,
I don't know if you have seen any of my husband Jimmy's posts but he had a severe reaction. Needed to take a break and is now back on 100mg and going great! I hope all goes well on a 100mg.



Deanne
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[phillipa]

Sharon, where was the tumour located? I might be clutching at straws here, but want to get the best possible outcome for Kent. He was crying last night and I have never seen this before. He waited until the light went out and he thought I was asleep, so I rolled over and he realised I had been crying also. We just lay there trying to comfort each other. He's gone to work today and will be home after lunchtime, as we have the appointment over at Papworth this afternoon to discuss palliative treatment.

[Deanne Jenkyns]

Hi Phillipa,
I was so sad reading your post and just wanted to send you bug (((((hugs))))) Will be looking out for your update about your appointment.


Take care
Deanne
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[phillipa]

Oh, what can I say, except thank you Deanne for you compassion. A special bear arrived in the post yesterday and he is sitting with me. We took him to the consultation with us. i don't care how naff it looks. Cuddles Bear is going with us each time we go to the hospital.

I am off out to have lunch at the Ferryboat or the Gardens in Granchester. I will check back leter this afternoon to see if all is ok.

Hugs to everyone ((((((()))))))))

[wendy]

I was diagnosed with NSCLC in January2007! I had developed a cough in December and was initiallt prescribed antibiotics + inhaler by my GP. Three weeks later I felt decidely poorly and requested a sick note which was reluctantly given. We paid for an x-ray and were informed immediately that I needed to see a chest specialist. The GP phoned us at home and said that "I hadn't looked as poorly as I should have under the circumstances.
I had two litres of fluid drained off my left lung by which time it had collapsed.
My cancer is inoperable but treatable. I had six cycles of chemotherapy and in July started Tarceva.
I had paid for private health (just incase) after seeing how the NHS treated eledrley relatives.
I am extremely lucky as the care I have received should be available to everyone regardless. At present the Tarcava is funded by the health insurance for one year. I have been regularly looking at the NICE site to see their recommendations and was appalled to see their latest arrogant response to the erlotinib appeal. I spent most of last night e-mailing anyone I could think of.
I should have written on your site before as I have frequently read through the many letters mainly in the middle of the night when sleep doesn't come!
Hugs and love to everyone out there surely there must be someone who really cares and doesn't see us all as statistics. What is the "cost effectiveness" of NICE?

[dtay]

Hi Wendy
Thanks for posting here. I agree with everything you have said - it is disgusting that patients are treated as statistics and that everything boils down to cost. My Dad was on Tarceva until recently and he has been self-funding, it has cost a fortune over the 6months or more that he was on it - worth every penny though for the good quality of life he had on it . This whole issue makes me so angry - people are being denied life-saving drugs because of penny pinching regimes - as you say surely someone out there cares ?
Dawn x

[emilyr]

Dawn - you say that your Dad was on Tarceva and has been self-funding. My Dad's oncologist is currently applying for NHS funding for Dad to be given Tarceva but thinks it is likely to be rejected. As you say, it is utterly infuriating, that there are drugs out there (and freely available in some areas) which can help but that patients who are suitable for them cannot gain access to them. My question to you is, if we don't get NHS funding, we too are going to try to fund it privately. Did your Dad manage to pay JUST for tarceva, or has he also had to start paying for all his other care costs? I would be so glad to hear from you. Thank you so much. Emily

[dtay]

Hi Emily
My Dad pays only for his Tarceva - he sees his Onc at an NHS hospital on NHS at the moment. There was a mention at one stage that he may have to pay privately for scans and consultations but no further mention was made thank goodness !! Tarceva gave my Dad a very good quality of life for many months and certainly cointains the cancer in his lungs.
Hope that answers your question - best of luck to you and your Dad - I hope that he wont have to pay for his Tarceva.
Best wishes
Dawn x

[elsa]

We are due to start chemo is it right that prior to looking at Tarceva you have to have had some chemo??

[Deanne Jenkyns]

Hi elsa,
Tarceva is normally used as a second line treatment meaning that chemo is given first. Some patients have managed to get it as 1st line but this is difficult. They NHS is very reluctant to give it as even second line, most people who are on are either paying or they have had to fight for it.

Hope that helps
Deanne
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