Sutent

Dear Lorita

First of all, I'm so sorry to hear that your brother is in need of Sutent for kidney cancer.

I'm not sure what the best thing to do is, but perhaps these suggestions might help?

Sutent is manufactured by the international drug company, Pfizer, and it may already be available in Kosova, so please get your brother or another family member to check this out with his doctor. I would also suggest that since you are yourself in London, you phone Pfizer to ask them if Sutent is available in Kosova.

The UK website for Pfizer is http://www.pfizer.co.uk/Pages/Home.aspx and the telephone number is

01304 616161.

Also, if you look on the Pfizer home page, you can click through to another page which may be useful to you - the list of international Pfizer sites. http://www.pfizer.co.uk/Global/Pages/websitesworldwide.aspx

It may be, for example, that even if Pfizer is not present in Kosova, their drugs can be sold there via another country close by, such as Austria or Greece perhaps. Pfizer have local companies, reading their list of websites, in Greece, Czech Republic, Austria, Germany, Hungary and Italy.

So it MAY be that your brother can get Sutent without leaving home?

However, if he needs to travel so that it can be prescribed to him abroad from Kosova, please check out the issue of coming to the UK on medical grounds which may have different visa requirements? Of course, you may well have checked all that already!

My second suggestion then would be that would it be possible for your brother to travel more easily to another country that has less strict visa entry requirements for Kosovans, perhaps Greece or Hungary, where Pfizer has a local company?

I would think that, whatever country he travels to, the UK or elsewhere, he will need to know if he can visit a British (or Greek etc) doctor to receive treatment.

The second issue is that, sadly, of cost. In the UK, Sutent is very rarely available free on the National Health Service - there is a campaign to make it free, but at the moment, most people have to buy it privately if they do not have health insurance. And, this is the worst news of all, Sutent is VERY VERY expensive. It costs about £3,000 a cycle (ie, per month) which is extremely expensive. I doubt that Pfizer sell it for much less in any country?

Be warned, therefore, that if your brother does come to the UK, he may also have to visit a private doctor (which costs about £150 for a consultation!!!). It is worth your asking your own GP what the situation would be if he came here, as I do not think that many (any?) doctor in the NHS is allowed by the government to prescribe Sutent, which means he would have to see a doctor privately, and pay, simply to get a prescription for Sutent!

Also, if he comes, he should bring all the medical data he can, such as blood results, scans, and so on (and get them translated as necessary!)(but, again, check with your GP is this is necessary).

I would also recommend that you go and visit the site of the UK Kidney Cancer association - KCUK http://www.kcuk.org/ - and post your query on the forum there. There are many people on that forum with a lot of experience in kidney cancer and Sutent and other drugs, so they may be able to give you more accurate and more helpful advice and information than I possibly can.

If I think of anything else, I will post again.

Until then, all my very best wishes to you and your brother at this very difficult time for you all.

Julie

PS - I believe another drug, very similar to Sutent, is Nexavar, which I believe is cheaper - not a great deal, but some. Also, I do know that in the UK the NHS will prescribe Interferon free to patients (though they may have to be UK citizens??)(again, ask your own GP!). Although Interferon is an older treatment, it can still help with the disease, and slow it down, so it may well be worth taking if it proves too difficult or too expensive for your brother to take Sutent.

Thank you and everybody that gave me information about sutent i am helples cant have the pill for him ,it is millioners TABLET SUTEN not for working hard people.

You need to get in touch with the drug company, Pfsier, that makes the drug. There is a patient assistance program that will provide the drug free for those that can't afford it. I get the drug for free. It took only days. I had to fill out a small form, have my doctor sign it, verify my income, and write a short letter,  It was aprroved in a matter of days, and the drug was shipped to me.

Richard

Richard - that IS cheering news!

I suppose one argument is that all the drug companies with new drugs that are awaiting approval by the likes of the NHS and so on are very keen to be able to demonstrate to the NHS just how well they work, and how much 'value for money' they therefore are. So I can understand that, to an extent, they may well be prepared to 'loss lead' and give the drug away free so that more people get it and, as we all very much hope, do well on it, and so provide the crucial data that they need to convince the NHS to fund it.

Also, of course, perhaps they are also compassionate when they can be, for those who really cannot afford it. Let's hope so!

I know that the 'profiteering' of the giant pharmaceutical companies is always a controversial topic, but I did read somewhere that every major drug costs now about a billion pounds to get developed and accepted, and so it may well be understandable how expensive they are to buy. Plus, of course, each successful drug has to also pay for developing all those drugs that never make it on to the market and fail their final trials.

But I do hope Lorita's brother manages to get Sutent, or a good equivalent.

Julie

On 7/17/2008 JulieUK wrote:

Richard - that IS cheering news!

I suppose one argument is that all the drug companies with new drugs that are awaiting approval by the likes of the NHS and so on are very keen to be able to demonstrate to the NHS just how well they work, and how much 'value for money' they therefore are. So I can understand that, to an extent, they may well be prepared to 'loss lead' and give the drug away free so that more people get it and, as we all very much hope, do well on it, and so provide the crucial data that they need to convince the NHS to fund it.

Also, of course, perhaps they are also compassionate when they can be, for those who really cannot afford it. Let's hope so!

I know that the 'profiteering' of the giant pharmaceutical companies is always a controversial topic, but I did read somewhere that every major drug costs now about a billion pounds to get developed and accepted, and so it may well be understandable how expensive they are to buy. Plus, of course, each successful drug has to also pay for developing all those drugs that never make it on to the market and fail their final trials.

But I do hope Lorita's brother manages to get Sutent, or a good equivalent.

Julie

Lorita

Your brother's diagnostic CT scan:

As a first step, it might be a good idea to have a word with your own GP in London, and ask their advice. They MAY say that one of the radiologists at your local hospital can read it, or they may even be able to read it themselves (ie, they may have the medical skill necessary). However, if your brother is not a UK resident, then they may not be allowed to get involved?

If that is the case, you would, I think, need to go and see a doctor privately (it costs about £70 to have a private GP appointment I warn you!) (and they would need to get a radiologist to look at the scan, which would cost yet more - about over a hundred pounds I would think? But you can find out of the price from the private hospital before you go ahead, if it's too much.) (To have a private CT scan in the UK costs about a thousand pounds!!!!!) (though you may find some private companies do them more cheaply?)

I would assume that your brother's CT has already been looked at by a radiologist in Kosova. If that is so, it might be a good idea to have a copy of that radiologist's report sent to you, and for you to translate it into English, and that will help any British radiologist/doctor who looks at the CT scan or who goes on to treat your brother.

What is your overal purpose of having the CT sent to you? Is it so that a British doctor can look at it, and recommend that your brother come to London for treatment, so that he can get a visa? Or is it to get a second diagnosis?

If your brother has advanced cancer, which has spread to other organs, then I know that one decision that will need to be made is whether to take out the kidney and the primary tumour, before treating the whole body with Sutent or other drugs. If your brother is in good general health, the doctors may well say it's a good idea to take out the primary tumour, and get rid of that, so the drugs 'only' (!) have to deal with the mets (spread cancer). Again, I should warn you that if you have to operation done privately it can cost thousands of pounds, depending on the length of the operation and the level of difficulty and aftercare he needs (eg, if he needs to go into intensive care after the operation.)

However, my husband's oncologist told my husband that, when it comes to Sutent, there is no medical evidence one way or the other yet to indicate whether taking out the primary tumour helps in the long run. This is different from Interferon, where, I am pretty sure he said this (!), there is evidence that taking out of the primary tumour first DOES help.

Speaking of Interferon, it if comes to treatment for your brother, I can tell you that Interferon is available free in the NHS to cancer patients here. So, it might be a possibility that, if Interferon is not free in Kosova, or not available, if your brother can get to London for NHS treatment then Interferon will do him good, even if he cannot afford Sutent. Interferon does help many people, and can hold back the disease, and perhaps therefore buy valuable time, although the oncologists now prefer the more powerful Sutent for those who can afford it.

As ever, all the very best for your brother and yourself.

Julie