Happy New Year to everyone. We hope everyone had a great Christmas. I did not get my static speckles but Oakley did get his train set. Quent is one of the few to be pleased to have put on several pounds - he is now almost 12 stone and looking great.
We have been back up to the hospital this week for a Chest X-Ray and to see Dr Savage again. This time he had three female medical students with him - sort of like the world's most silent backing group.
As the role of chauffeur has been made redundant, Quent has redeployed me onto the newly created post of research assistant. I am making the best of it, although it's a shame to be desk bound and I have none of the skills required to interpret medical jargon. It seems he has taken very seriously his legal obligation to consider me for all other roles.
I have waded through some good summaries of research in the area, forwarded by our renal consultant friend, David. I came up with a long list of questions for Dr Savage who answered them all thoroughly and gets his Scout Patience badge for his efforts.
In short (actually in very long. Get yourself a coffee before you start), the situation is as follows:
Dr Savage still recommends monitoring rather than starting treatment. The X-ray hadn't been written up when he saw it, but he said it looked OK to him ie. no radical changes. Quent is showing no symptoms (cough, sickness). Dr S suggests starting treatment when the spots are 3-4cm big (on last CT scan they were 1.2cm). The document I read suggested that one of the indicators for responding for treatment was having at least 6 months between removing the kidney and starting immunotherapy, so maybe that helps answer everyone's question of "Why not start now?"
None of the treatments have a great success rate. As Dr Savage put it "anything over 5% long term survival is good". This means that you are putting up to 95% of people through treatment for little / no benefit. The upside to this is that Quent is a good candidate for treatment - ie. we feel he has a good chance of being one of the 5%.
The treatment with the best long-term results, albeit for a small percentage of people (only 15% response rate), is
high dose intraveneous interleuken 2 (IL 2). This has only ever been given in the USA and is very toxic. It involves putting people in and out of Intensive Care and "sometimes beyond" as the Doc tactfully put it. His understanding is that even the USA has stopped the treatment as it makes 85% of people really ill (or worse) with no benefit.
Other treatments /trials are as follows:
1. Interferon alpha on its own. Not great response or long term survival rates, but one of most commonly used over here.
2. Interferon alpha combinations. (Mixed with other things, including IL2). Arguably better than on its own but not as good as IL 2 on its own.
3. Molecularly targeted therapies. Sorafenib, sunitinib and temsirolimus. All recently or imminently to be licenced. Seem to be getting good response rates (ie work with more people) though not fantastic long term survival.
4.
Nonmyeloablative allogeneic hematopoietic cell transplantation. This is the medical version of supercalifragilistic... and Dr Savage pronounced it with aplomb. For the rest of us, it's a bone marrow transplant. It's very experimental ie. early days, but there are some encouraging reports. It does, however, comes with the risk it rejects all your cells not just the cancerous ones. (this wd put you back in the euphemistic "beyond Intensive Care" situation).
Basically, instead of trying to get Quent's immune system to wake up and smell the cancer (the methods of 1-3 above), this gives up on his immune system and gets in someone else's - generally a sibling. It shows best results to date on pulmonary metastates (lung spots) which is what Quent has. I got quite excited about this when reading up, especially given Quent has 4 siblings whose immune systems might be less laid back than his. (Disclaimer: This is of course my decidedly non-medical interpretation.)
5. Dendritic cell vaccines. It's very early days but again, there are some promising reports on this, which would inject Quent with hybrid cells of fused autologous tumour and allogeneic dendritic cells. Getting it from experiment to a licenced product hasn't been very successful to date because very few patients do well with it (it has low response rate). There is also a trial (in New York?) giving just the white cells - with some success and less risk than replacing the whole lot.
Quent's treatment will be as follows:
1. Triple therapy. Cocktail of interferon alpha, reasonably high dose interleuken 2 and 5 FU (a chemotherapy drug). This will make him pretty ill, but does have some chance of long term survival and you have to have this before being allowed anything else.
See 2 above2. Molecularly targeted therapies. (Sorafenib or Sunitinib).
See 3 above3. Experimental treatments. (Vaccine or bone marrow).
See 4 & 5 above. At this stage these are only available on clinical trials, but hopefully by the time we get there, more will be known. Or in the words of Dr Savage "Modern medicine may have something worthwhile around the corner".
How's that for a girl who didn't even do science O levels and faints at the sight of blood? I've undoubtedly got some of it wrong but I think the gist of it is right.
Our next visit is in six weeks' time unless Quent develops symptoms in the meantime.
