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we have just had the dreaded news that my husbands mets in his lungs are still growing after 3 cycles on sutent. his consultant made the decision to stop the treatment today. he was diagnosed in sept, went onto sutent in january as the cancer in the pelvic bone and lungs were growing fast.
he had laser surgery and some cement type stuff put into the bone to try and kill the cancer that way but 2 weeks ago , an xray showed that they had grown substantially.
today we got the results of his lungs . it was a shock as my husband felt it was working in the lungs and has not felt they were getting worse.
his consultant is now referring him to a professor in cambridge who is doing drug trials for people that did not benefit from sutent. he did however mention interferon as a treatment, but felt this was the better way to go.
im just on here really to express my utter fear at what next in this rollercoaster ride and that i was so confident from what id read that sutent would work in the lungs at least. my husband has an aggressive form and just feel everything is against him. has anyone heard or know anyone on these trials? or does anyone know or had interferon or interluekin-2?
i went to the kidney cancer association seminar in london in may and a doctor was saying that used before or after sutent , interluekin-2 has proved very sucessful.but i know its a very aggressive treatment.
I'm sorry that Sutent doesn't seem to be working, especially since he felt it was. However, as I'm sure you know, there are at least three more drugs (Torisel/temsorlimus, Nexavar/sorafenib, Afinitor/evarolimus) that are also in use to treat metastatic RCC, so you are not out of weapons, at least from a medical point of view, which is good news. What is bad news is that NICE does not yet approve any of them for the NHS. Like Sutent, they are available privately, but the cost is very high - around £3,600 a month (though like Sutent, I believe each cycle is actually six weeks, as you are off the drug for two weeks and on for four - so a year's worth of Sutent costs about £30,000).
However, they CAN be available as part of trials, and, indeed, there are also trials ongoing of other drugs, even newer (I'll look them up and list them for you!)(pazopanib is one, I know)(it can get confusing as they have generic names until they are approved by the USA authorities, and then are given a trade name, which can vary in the UK and USA!).
If your husband is being referred to Cambridge, may I ask if he is going to be seen by Prof Eisen? If so, then he is in good hands! There is a LOT of research and clinical trials going on at Cambridge, which Prof Eisen - who is one of the very top RCC consultants in the country! - is closely involved with.
Just because your husband has not responded well to Sutent does NOT mean he won't necessarily respond to other drugs. I know from US patients that there can be a huge variety of response, and that a patient who does badly on one drug does remarkably well on a different one (although the drugs are similar in many ways, they each tackle a slightly different metabolic pathway in the mets, which is why patients can respond so variously.) So there is every reason to hope that your husband may respond to one of these other drugs.
As for interleukin-2, yes, Prof. Hawkins at Christies Manchester is a big fan, and the best known name in High Dose IL2 treatment in the UK (though it is also done at Barts, I believe, with Dr Powles)(I'll have to check!). Like you, I was at the KCA day, and I can appreciate that Prof H is keen for HDIL2 not to be neglected by those patients who may be suitable just becuase of the new drugs! Yes, it is aggressive, and as you know you have to be inhospital to have it, but I recall that Prof H says that patients find out very quickly, within a couple of weeks I think, whether it's showing signs of working, so if it isn't, you can drop off it and not endure it unecessarily.
You could, I would think, check out with Prof Hawkins whether he considers your husband a suitable candidate, though if he says yes, you may also want to weigh up whether IF your husband has HDIL2 and IF it is unsuccessful, WOULD THAT mean he is ineligible for any of the drug trials at Cambridge? Conversely, if he does go through with a trial, would that lessen his chances of success with HDIL2 (in other words, could he go on a trial, and if that doesn't work, still opt for HDIL2 afterwards?) - so it would be worth putting all that to Prof Hawkins as well.
I'll go and check which trials are running in the UK - there is a website you can look up (one is via the Cancer Research UK site, and another is -ironically! -via the US clinical trials website)(since most of these trials are international).
Although it's a blow that Sutent hasn't seem to have worked for your husband, as I say, please take heart from the fact that there still a growing number of new drugs existing and in development, as well as the possibility that your husband might be a candidate for HDIL2, (One thing with HDIL2 - he will need to be checked for brain mets, as that is an excluding factor, alas, until they are successfully treated.)(and I have to say I'm unsure aboutthe situation of bone mets!)
All the best possible, and hang on in there! Julie.
thankyou so much julie for your thorough reply, it has really helped us. yes he will hopefully be seeing prof eisen. thankyou for the help on interleukin 2 aswell, there is more we can look into and i can have abit of hope again.
all the best to you xxxxxxxxxxx
I'm glad you're feeling less down, and do, do hope that things move in the right direction from now on.
All the very, very best possible - kind regards, Julie.
hi julie, i hope you get this message i know its an old post. i didnt know who else to contact. and you have been so helpful.
after the hope of getting on the trial with proffessor eisen we went 2 weeks ago for all the standard tests in order for them to proceed and we got the dreadful news he has 8 brain tumours. we were told he could have weeks or months to live!
he is having radiotherapy next week and is not able to go on the trial now although proffessor eisens registra has reffered dave to another proffessor who is doing drug trials for various cancers , but i doubt he will qualify for that.
dr fife was actually on the board meetings for the drug affinitor which NICE have just refused and she said she was the only kidney cancer doctor there, and felt very strongly that it should have been approved. she is recommending his leicester dr apply to the PCT in leicester but again i doubt they will approve it. we are now looking into funding it ourselves for a few months and then applying if it showed it was improving things.
if you know of any one to contact or just anything that might help i would be greatfull. we both feel its surreal now that a few weeks ago we were told this horrible news , he looks so well and has had no side effects of the tumours apart from some flashing lights, even the doctors say how well he looks. the cancer is also in the liver and spine he has only had it 10 months and nothing has slowed it down. he cant even get 2nd line treatment.
all the best for you julie
kind regards karen x
Dear Karen - I've only just seen your post (been away) - I'm so so sorry to hear of your husband's latest diagnosis. It does seem rotten that so few cancer trials take patients with brain tumours (though they crop up in a good 20% of RCC patients I believe), especially when it's the only chance in this country of geting access to the latest drugs.
I'm glad your husband is already having radiotherapy, and do hope it has some good effect. I take it that it is Whole Brain Radiation, rather than gamma knife (simply because the latter is still rarer in the UK). You might want to get in touch with a gamma knife centre (not sure where you are, but I know there is one in London and another in Sheffield, and quite a few scattered around.)There may be issues, however, in that gamma knife is very expensive, so we are back in the nightmare of insufficient NHS funding. If you wanted to consider gamma knife it is worth contacting the specialists centres, not just asking your oncologists or WBR radiologists, and there is quite a lot of divided opinions I think - non-gamma knife specialists might say eight tumours are too many for gamma knife, but I know that some patients have that many treated, possibly even more (however, there are size issues as well to add to the situation.)
Has your husband been put on steroids (dexamethasone - dex) to help control the symptoms (which can be caused by a build up of pressure from leaky brain tumours)?
In terms of whether or not your husband might just be able to get some non-funded drugs from his PCT, my best recommendation would be to check out the websites http://www.kidneycancersupportnetwork.co.uk/
They are both very into helping individual patients get exceptional funding - the campaginer Rose Woodward is doing wonders in getting non-funded drugs for patients, and she may be able to help you.
You have my every sympathy at this hideous time - Julie.
we had an emergency appointment last week with daves consultant before he went on his hols. he wants to try interfron first and then he his hopeful afinitor will be licensed as 2nd line treatment, or the governments emergency fund will come into place. its still a question of waiting till daves off the steroids, he is on deaxamethasone with abit of moon face.
i know bob on the blogs section had gamma knife and he had 16 tumours.
we felt abit more positive when we came away although the life extension on afinitor shocked dave as the doc said it would give him about 4 months extra. as we were told at the seminar they are all statistics.
thankyou julie for your help.
hope you are well and kind regards
I am on sutent at the moment but met my specialist last week who said that there was another drug that had just got a preliminary license. I think it was called vontriol or something similar. He said that the drug was supposed to be just as successful as sutent but without as many side effects.
Ask your specialist about it.
Hope this helps but if you need any more info just post me!
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