Peeing in a bottle brings good news.

Yesterday I had the odd task of collecting my urine for 24hrs in a big container to establish a baseline for treatment, this led to the odd problem, for a man, of having to take your rucsack everywhere with you and specially to the toliet. As we went to some friends for the evening yesterday I had to bring my rucsack with me and drink a lot of water along with the two glasses of red wine I allowed myself.

The good news is that we went to see Dr Scott today and as we had specially booked the last appointment of the day we were able to have a long chat about the way forward and the latest results.

Most important result is that the disease is contained in the nodes and as far as they can tell the other signals from the thymus and the liver are false positives, which is a problem with PET scans. There are about six other prognostic factors which are used to determine probability of success of the treatment such as general fitness (+), time from last treatment (-), stage 3 rather than stage 4 (+), anemia (+), albulum level (+), physical symptoms (+) and type of Hodgkins (+). So in summary I am positive on five of the six prognostic factors at this stage and look to be in good shape for the treatment.

The next most critical thing is if the cancer responds to the new IVE chemo, if it does we are in pretty good shape, percentage wise 70%, compared to our current level of around 50% with the good factors above (these being disease free progression in five years time). After a long chat with the doctor where Lee and she exchanged views on cytokines and CD30 antibody activation, all over my head but this is the area Lee works in so they had a good discussion, I felt that they (a) really understood their stuff, and (b) the treatment plan was a very positive and balanced way forward. So, coming out of the consultation I felt much more positive than I have done for the last few weeks of waiting and I can feel my "fighting head" getting in control of things and starting to create positive energy for the treatment.

The first chemo treatment, given through the implanted Hickman line, is IVE ( Ifosfamide, VP16 Etoposide, Epirubicin ) the first one is a continuous infusion over 3 days, the second is two hours each day for three days and the last is a one shot deal on the first day. These are given with a mix of anti nausea, antibiotic, and kidney protecting drugs along the way so is a four to seven day hospital event. Then I go home to rest for two weeks trying very hard not to get infections as my neturophil counts plummet and I am vulnerable, even more than before, to the slightest infection.

There will be three cycles of this treatment, (three sets of three weeks) and within this treatment two critical things will happen.

1 I will get CAT and PET scans at the end of the second cycle, these need to show reduction of at least 50% in the mass of the disease to indicate it is reacting to the chemo and hence predict that the later chemo really will kill it, this is the single most important prognostic factor and either pushes the success probability up or makes it unlikely that the treatment will work.

2 I will get stem cells harvested from my blood at the end of chemo 2, this is usually straight forward for Hodgkin's patients but we need to get a certain amount of the stem cells to make the later treatment successful and a small minority of folks do not manage to "mobilise" the stem cells for reasons the doctors do not understand.

Total time for this stage, all going well, will be around 9 weeks or so from the 4th Jan.

Presuming that both of these things have gone well, and the signs today are pretty positive, (mind you we did say that before) then that will set me up for the heavy duty chemo to kill off the immune system completely and then the replacement stem cells will be put in to grow it all back, which should be some time around mid March or April and will be a month or more in hospital on close support, followed by a few months of recuperation. So if we are lucky some sense of health could be restored by about June - after which I will need a holiday!

So that's a plan and I feel pretty good about it, I now have a list of things to do while I still feel well enough to handle a drill and move furniture about the house, and another list of things to prepare for the hospital stay, phone, DVDs, pyjamas, books, supplements etc. From what I understand I will be hooked up to a chemo line 24 hrs a day and either be trying to be sick or being bored so the west wing and the sopranos will be some comfort on DVD when I am to tired to read. I will try to get a personal web enabled phone so I can stay in touch with blogs and emails in the hospital, I think chatting into phones is verboten, but quiet texting or email seems to be OK. I will need to work out how to get my home email from the remote if that is possible for us technically challenged folks.

We had a very nice christmas by the way, we went to Ireland to see my family, which was really nice and helped everyone set up for the next challenge, then we had a selfish quiet christmas with just us, presents, traditional dinner and falling asleep watching a movie. We had planned to visit Lee's mum and dad but her mum has the flu so I needed to steer clear of any chance of catching her flu. I had hoped to get her set up on the internet as I did with my mum when I was in Ireland so hopefully once the connections is finalised I will be able to chat to both homes on email and the blog.

So off for more nest building and sorting out of the house, I hope you all had a great Christmas and look forward to a very Happy New Year!

Cheers

Gerry