Round 3 Ipi

Cape Town was utterly gorgeous and we did need to wonder how we had ever left. We relished fabulous walks along the Atlantic seaboard, spectacular sunsets and some slow and precious time catching up with James, seeing his photos of his France trip and watching his team playing hockey. Tim worked hard during the week, while I played, and our weekends in Camps Bay and Noordhoek were idyllic. We loved catching up with the Cape Town partners and their wives at the strategy meeting at Asara Wine Estate in Stellenbosch.

Round 3 is causing fatigue and a spectacular rash on my shins, back and arms. While unsightly, it is a welcome indicator that my immune system is responding to the Ipi. My blood tests reveal that things are beginning to skew as a result of the drug. Dr Tabane seemed gently confident that my 50th birthday is within range.

Ali is safely back, having had an eye opening and immensely stimulating trip to the US. They saw 9 shows and many of the masterpieces he has studied in art. He's getting through the jet lag now and needing to get back to his desk to do some studying.

Nicola has flown out to the UK and then to Nairobi on a 10 day breather. There's no holding this lot back. We're a lucky bunch.

Round 2 of Ipilimumab

Dr Tabane was suprised and delighted to find my blood test results normal after the first round of Ipi and to see me in good health and little affected. In fact, she said she rarely sees such bloods in her profession.

The second round is well in progress and the side effects are niggly, so it's business as usual.

Ali finished his mock matric yesterday. the art was a great success and some of the exams were tough. It has been a gruelling period and he has worked hard and given his best.

I booked for him to go on the art tour last November, being concerned that things could be horribly nasty for him. Well, he heads off to New York on Saturday, after a relatively straight forward and normal first half of the year. He has been so well educated in History of Art and the opportunities to see the Guggenheim, Metropolitan and MAMO, will be well appreciated. He is going with a good band of St John's boys and teachers and their itinerary is astounding.

On Saturday, I took him off to do his 6 hours of National Benchmarking Exams for university entrance. It was a quiet moment of triumph and one I had not anticipated having.

James is happily back to his delightful UCT student life, having had a truly marvellous trip to Europe, where he followed the Tour de France for two weeks. He was warmly welcomed by our family, the Mackies, Bashalls and Bennetts in the UK and made the speech at the wedding of our dearly loved Alice, who was his nanny when he was a little chap in Joburg, and now lives in Bradford. I'm so looking forward to hearing all about it.

Nic is still leading her busy life, each moment filled with stimulating and challenging activities and people. She has joined the Saturday tennis school at the Country Club, which is good fun.

The double dip has arrived, which is making business tough all round. Tim has been in Kenya addressing the Africa Board. He had the opportunity to spend the weekend in the Masai Mara, and we had an amusing call from his bath tub out in the open on the banks of the Mara River. We're looking forward to a quiet, restoring break in Cape Town next week.

If anything, the small things in life have become delightful.

Ali's art

Ali is submitting his matric art today. 4 big canvasses and a sculpture, all of Annabel Vincent, Susie Shave’s delightful and beautiful daughter. This one is my favourite.

He will have the sculpture in the middle and all the canvasses surrounding it. They depict different moods; pensive, passionate (conducting), elated (twirling) and then there is one with just her face v large, done with a broad brush. He’s worked and hard matured considerably, particularly through the frustrations with the technical difficulties with the sculpture. It was completely trapped in a block of plaster of paris twice.

Mocks start next week and he has so much work to do to achieve the outrageously high mark he needs to get a place in medicine.

Whatever he does, I know there’ll always be an easel, jars of brushes and that scent of turpentine in his world, art makes his heart sing.

The weekend has gone well and the only side effect I have is a headache a bit like a vice around my head, which is easy to manage. What a happy suprise!

Family in Mozambique

Mamma Mia

Bristol Myers finally managed to track down their senior executive to sign the document and I received permission to use Ipi yesterday.

A friend at Harvard kindly described how it works in plain English for me and the description of the action of the drug follows:

when you have cancer growing, the body naturally produces cells called T killer cells to fight off the cancer cells. But what happens during the progression of the cancer is that T cells begin to express something called CTLA-4 on their surface which acts as a brake on them and T cells are no longer produced to fight the cancer cells. The ipi drug acs as an inhibitor to the CTLA-4 and thus allows for the T cells to be produced and fight off the cancer cells. My guess is that this will produce some side effects b/c mass production of T cells will not only kill cancer cells but possibly attack other things as well-thus resulting in side effects.

I had the first of four doses today. The return to the oncology department is chilling and raises all the questions about quality of life again. I always feel so robust and well compared to the other patients. Tim and I had a laugh about R 220 000 worth of meds going into my port. It's hard to grasp. I know how lucky I am to have access to this highly sophisticated medicine.

The anti histamine put me to sleep for more than half of the drip time and I have been alternately asleep or drowsy the whole day. Mild nausea is here too.

Let's see what tomorrow brings, but so far so good.

Pear shaped

Things have gone awry.

A new enlarged lymph node was not welcome, but very present. The horrible thing is that, from grisly past experience, I recognise the size and shape of them immediately. A biopsy confirmed that it is melanoma spread, so I had CT scans to see how the rest were doing. They've grown, not dramatically, but enough to require a new approach.

Unfortunately, I need to stop the Dendritic Cell Vaccine for the moment, but will resume it as soon as it is feasible.

Having got permission from Bristol Myers Squib to be on their drug trial and attained permission form the SA drug control board in Pretoria, all that needs to be done is for me to be allocated my 'lab rat' number and they will dispatch Ipilimimab from the US.

There has been much press recently since a big Melanoma congress in Chicago about Ipi and I have been touched on receiving several messages from friends all over the world alerting me to it. This is, in fact, the drug I was hoping to get before I started chemo, but due to limits with the trial process, I had to have the chemo DTIC first and show significant deterioration before I have been allowed access to Ipi on compassionate grounds.

Since this process started, two more glands have popped up, so I'm a bit anxious to start even though I know it'll push me into poor health for the next three months.

So, here I go again. It's 4 drips, one every 3 weeks. With each drip is a big dose of anti histamine and cortisone, so I don't have an allergic reaction. The side effects seem to be less gruelling than the chemo and the biggest dangers are colitis and endocrinal damage (thyroid, adrenal gland..)

The lucky thing is that, as SA is trailing, I will have the Ipi on a trial basis as the cost of it in the US and UK is the equivalent of R880 000 for the 4 drips. This saves the family the debate about whether to bump me off in the interests of their inheritance, or not!

The results from the trials are good and I had my cells tested at the Genetic Cancer Research Centre in Greece and they were responsive. Ipi is hailed as the biggest break through in Melanoma treatment in the last 30 years.

In the interim, the great part of life continues. James is home for 10 days after a tough exam period and long hours of tutor marking duty. He heads off to follow the Tour de France with his friend Zandy Sullie next week.

We had a fabulous long weekend in Mozamique last week. The whole team was together and we had the privilege of walking memory lane with Tim as he showed us his grandparents house in Maputo, where he spent most of his childhood holidays, and Inhaca island. We ate an unreasonable number of prawns and James initiated us with R and R (rum and raspberry). We had dinner at the Costa da Sol with David and Paddy Spence, Tim's mum, Alison's cousin. The restaurant had not changed in a generation and we were treated to a delightfully told history of the family in Mozambique. We were all entranced.

A new challenge and much for which to be grateful.

A million trained dendritic cells at work

Yesterday, I had a million dendritic cells, trained by exposure to those liver tumours, injected back into my system. We had the opportunity to see them under a microscope too. I feel so lucky to be able to have access to this level of highly intelligent medicine.

A new vaccine will be incubated with fresh blood in a months time.

I'm sure the positive energy and hope, engendered by this, is healing in itself.