Plans A-Z

We saw Dr Savage on Tuesday and yesterday we saw the Prof in Manchester. In between the two visits, we had a sleepless night as Oakley redecorated the house in vomit. Nice. We had to leave at 7am yesterday so the scene of carnage was still here when we got back.

We now have a plan – or several, in fact. Those of you interested in the detail, prepare for a long read, the rest of you can just hope and pray that Plan A comes off.

Plan A

Wait and see. Re-scan in early January to see if the spot has grown or not and whether it is still alone. Hope that it doesn’t grow and that no more appear. There is even a slim hope that it might have disappeared. This isn’t a likely result, but I am hoping that now Quent’s body has recovered from two major ops, it might just be able to sort out the tumour. They would not treat a small volume, asymptomatic tumour, so unless it grows, or more appear, we’d just keep a watching brief.
As an addition to this plan, Quent is keen to have a trial vaccine. There are several vaccines in trial but it seems they aren’t getting the results people had hoped they might a couple of years ago. There is no downside though, so if his blood qualifies him for the trial, he will have the vaccine, hoping that it might just work on a tiny spot in a young, fit man.

Plan B

If the spot has grown, but is still alone, then it’s back to Mr Jones for surgery to remove it. Then wait and see again. (This should definitely be a flow diagram).
There is another vaccine, developed in Germany, which is apparently getting slightly better results than the UK one and has a longer track record. They take the white (fighting) cells from the tumour they have just removed, grow more and include them in the vaccine, so you are injected with a super dose of your own tumour fighting cells. Prof will see if we can do this vaccine once the tumour is out.

Plan C

If the spot has grown and there are others, surgery is not an option and nor is wait and see. This is when it gets tricky because, although are plenty of things available, most of them are highly experimental:

Biological treatments (Interferon / IL-2): No longer an option as they don’t tend to work second time round and Quent’s had IL-2 already. This was the “best shot” and we got a good result, but not a complete result.

Targeted therapies or TKIs (Sutent / sunitinib, Nexavar / Sorafanib, Torisel / Temsirolimus etc): These are the standard second line treatments, but they do have quite a few side effects and do not offer any hope of a cure. On average, they extend life by about a year. They may be our only option, but we are very keen to explore everything else. Sutent seems to be the drug of choice but there some possibility that high dose sorafanib will get an even better response. Prof will investigate this one further.

Vaccines: Quent will probably have had the available trial vaccines before we get to Plan C. There is still great hope that one day an effective vaccine will be found, but they haven’t got there yet.

Stem cell transplant (often called bone marrow transplant): This is the high risk, high (potential) reward strategy, giving benefit to over a quarter of patients treated and a potential for long term remission in some patients (about 10%). It often works well for people with lung tumours and people who had some benefit from IL-2, so Quent would be a contender. It is the technique used in leukemia treatment, whereby they take T-cells from a sibling (assuming we find a match). They then damp down Quent’s immune system with some strong chemotherapy & radiotherapy – so it doesn’t fight the foreign cells – and then put the sibling’s cells into Quent. The hope is that the cells will be similar enough to be accepted by Quent’s body, but different enough to fight the cancer (graft vs tumour effect). The risk is that they fight other cells (graft vs host disease is reasonably common and can involve chronic problems such as arthritis, Krone’s disease, death etc.). The technology is not new, but its use for kidney cancer is pretty new. It is usually done in the USA by Dr Childs (at the National Institute of Cancer) and if it goes wrong, you can’t go back.

The transplant takes quite a while to get a result (setting it up, doing the chemo, new cells starting to fight tumour). It isn’t something you do too early (because of the risk of damaging quality of life) but you can’t leave it too late either.

We will start to investigate this one as a back up plan. The first stage is to tissue map Quent’s siblings and, if we get a match, then we may go to see Dr Childs in the USA to hear what he has to say. We met a man yesterday in the reception of Christie’s who has been to see Dr Childs and seemed very positive about the stem cell transplant. Sadly, it’s not an option for him, but he would have had it if it had been.

T cell treatments: Many believe this is the future. Dr Childs and Prof are both working to find the specific T cells which recognize the cancer, grow them and use them as a drug treatment. They are starting to trial the technique for melanomas (skin cancer) but, although a possible in the future, it hasn’t been done yet for kidney cancer. The benefit over the transplant is that there would be less risk of graft vs host disease.

Other trials: There is an early antibody trial, linking the antibody to IL-2 (Dr Savage trial). There is also an early trial of T-cell therapy in the USA, (Dr Yang trial) and a trial of NK cells (Dr Childs trial).

We feel better having seen both doctors and we take comfort that there is so much happening in the field. There is still some hope Plan A or Plan B may work and we won’t need the rest, at least for some time, but it’s good to know it’s out there.

So this time, thanks go especially to Bob and Ali, for coming round at 7am to look after Oakley, only to be told the plans had changed, Lorna and Phil for dropping everything to collect Oakley for the day from a layby off the M6, Rob for all his help with the research – and of course our medical experts for showing extreme patience and care every time we see them.