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.

Dendritic Cell Vaccine

It became apparent that if necessary, I could have the Dendritic Cell Vaccine as well as the Ipi simultaneously. This made the decision making easy. I consulted Dr Ramos, who, while unconvinced about the DCV, empathised with my situation and agreed to go ahead with harvesting the tumours for the vaccine. He is an old acquaintance through my friend Jenny and professor of surgery and master of keyhole surgery of the liver. I know that none of this is coincidental.

I also heard from the Research Genetic Cancer Centre that my cancer cells are responsive to Ipi. This is exceedingly good news.

So, we went ahead with the surgery on Monday. I'm back home now, with four holes and several stitches in my fat tummy and feeling as if I did a million sit ups yesterday. There will have to be a couple of days of teetering around. I am notorious at underestimating the effects of surgery and had planned to teach this morning!

The surgery was scary and successful. Dr Ramos, using his immeasurable skill, managed to extract 2 pea sized tumours from my liver. He had a look around and said the rest of the liver looked normal and definitely not 'riddled '.

They took 20 tubes of blood too and Tim and Nicola did the dash to get the material to Pretoria within the 4 hour margin, while it was viable for making the vaccine. What drama! They almost needed a poice escort. I was so relieved they could go together.

Unfortunately the blood was put into the wrong tubes, so yesterday, they had to take another 20 from 3 sites and Tim did the drive to Pretoria again.

The vaccine is all brewed up now and incubating and should be ready to be reinjected by the end of next week. I am so lucky to be able to participate in this cutting edge technology. It makes such sense to me. The tumour cells have been sectioned and frozen at -70C and fresh blood will be mixed with them to make a new vaccine every month.

There is much to celebrate as it is almost a year since I was given a 10% chance of surviving 6 months. So , a bit like Benjamin Button, I'm getting younger rather than older! A very old a dear friend of the family, who practised as a doctor for 60 years told me never to underestimate the power of prayer. There can't be another explanation.

Doing well

I know it is nearly two months since I last wrote, but on hearing bad news, I chickened out!The family holiday in Plett with the Martin Bashalls just seemed to be the best healer and a bit of escapism seemed to be in order.

It worked well. We had the perfect holiday, not marred by as much as a broken nail. Plett was utterly gorgeous, the children all on great form and the greatest delight was that Francesca and Matthew announced their engagement there with us. What a privilege for us and such a source of delight.

Home again and needing to face some of the less appealing aspects of reality.

The last CT scan showed that the tumours had grown by 9% and that there were some new ones too. I have been feeling fine and just didn't feel like acknowledging the progression. But, further to owning the situation, I've been doing some research and I have two main options now.

They are mutually exclusive so I need to be careful about my decision.

Dendritic Cell Vaccine; I'll need to have a tumour removed, then sectioned and frozen. They then take my blood and train the dendritic cells to recognise the tumour cells as baddies and to attack them. A vaccine is cultured and then injected back. One of Dr Golding's patients is doing well with this.

Ipiliminab: a newly FDA approved drug which has shown good results melanoma patients. It has bad long term side effects and I need to consider the risk reward ratio. Just today, I heard that my cancer cells can be tested for sensitivity to Ipi by the Research Genetic Cancer Centre in Greece and that result will make the decision making easier.

I have had the port put in under GA and it is making it much easier to take the vitamin c drip, as there is no prospecting for veins, so I'll be having that drip twice a week.

Nothing is straight forward.

In the interim, I'm leading a rich and full life. Nicola is back from her trip to Morocco, having had a wonderful time, James has exams in too short a time and after a gory, but glorious morning shadowing a surgeon, Ali has decided that he has to be a doctor. So my wings are clipped as I need to give him every opportunity to raise his marks significantly in 8 weeks. Testing reveals that he has the goods but now we need to create opportunity for the bottom to connect to the seat, frequently and for long periods at a time. For those who know me well, the idea of Al doing medicine does fill me with irrational delight!

The Link at Salvazione school is powering ahead and the children are making very good progress. The challenges of literacy in the language which is not a child's mother tongue are many. Every minute spent among the committed and willing volunteers and delightful children is a healer.

Thank you for bearing with me.

Rip roaring 21st

It seems self-indulgent to be writing blogs when all is well, as the initial purpose of it was to provide information while the cancer crisis was in process. One or two kind friends have asked why I haven't written and I think, feared that I might be ill again, so, as I've come to enjoy the writing, I'm at it again.

We had a happy 21st for James. The speeches went well and I spoiled Ali's planned comment about water proof mascara by not shedding any tears at all. It was an appropriately joyful occasion, focused entirely on James and anyone who did not know us well, would have had no indication that we'd been a family in distress recently. Considering the fact that my initial diagnosis allowed me to think I'd never make it, it was a very special occasion for me.

Within two days of being back from Cape Town, on a huge high, my mum went into hospital for a fail safe, routine, life enhancing heart operation, which went horribly wrong. The probe went through her heart wall and she was in a critical state in ICU for several days. She was lucky to survive and has emerged with further heart damage, which is all plain bad luck. I was grateful to be well enough to be a supporter and quite relieved not be be the patient for a change. She is back to a relatively normal life style now and we'll have to see what they can do for her medically as she's right off surgery.

The Link at Salvazione School, the literacy programme I'm involved with, has started and is in full operation. We have 25 volunteers on a Wednesday morning and 20 on a Thursday. We're always looking for more so we can reduce the child: adult ratio to 1:1. This project is better for me than any medicine. On raising my head in the middle of a session, hearing the gentle hum of encouraging volunteers’ voices and the staccato voices of little readers, seeing the kindness and patience in people’s faces and the delight in the childrens’, and feeling the ground swell of purposeful work, I feel overwhelmed, it’s a bit like seeing a miracle unfold. The children are highly responsive and learn so quickly.

Tim is still battling with his back and we are persueing many avenues to help him to recover. This is where the term vertically challenged is appropriate.

My veins continue to be a problem and I may need to have a port put directly into a vein under general anaesthetic, so the drips can be admininstered easily. The hunt for veins is becoming more difficult with each visit and I'm only able to take one instead of two drips a week at the moment. One of the challenges for me with the cancer is to accept that I am only 10 minutes in the doctors’ day and that I really need to own my own health, even though my knowledge base and experience is so limited. I need to be continually searching for new solutions.

The struggle is much reduced at present, I hope yours is too.

No news is good

I'm humbled and touched by your interest in me. Thank you.

I have had a period of good health and living to the full since I last wrote on the blog. We are all so grateful for the constant pace of normal life, which might outwardly appear prosaic, but is so comfortable and comforting after the fraught roller coaster and uncertainty of the last six months of last year. I definitely do not have the energy I was so blithely accustomed to and need to pace myself and I never imagined that a trip to Pick and Pay in good health would be something to celebrate!

I had some very interesting tests done in November. My blood was sent to the Research Genetic Cancer Centre in Greece, where they isolated my cancer cells, grew cultures and tested them for responsiveness to 30 substances. The wonderful thing is that the test results indicate treatment which is individualised and specific to my cells. (It is a bit like taking a throat swab and seeing which anti biotic to use.) Chemo is more generalised and all patients with a particular cancer seem to be given the same treatment.

The test results indicated high sensitivity to Vitamin C, Quercitin and I 3 Complex. I have been having all three in large quantities since early December. I have Vit C and Quercitin infusions by drip twice a week and take all 3 in capsule form too. The drip consists of 20g of Vit C, which is a huge dose. My veins are in poor shape after chemo, so finding a good one is always a challenge and I had one really nasty and painful one , when the Quercitin dose was too high. It all is a bit loose at times.

Dr Mafafo, the oncologist was satisfied with my general condition and delayed the next CT testing by a month, so it's all good news at the moment.

We had a perfect Christmas and a happy holiday, all of which are healing.

James turned 21 and the pic is of his present from Tim - a set of seriously dull but essential accounting manuals!

The year has started well for everyone. Ali is doing an art project on portraiture and has done a series of self portraits, each better than the previous one. James flew in yesterday evening after a fabulous 2 weeks skiing inVail and 4 days in New York. Nic's job continues to challenge and thrill her. She had a big meeting of people interested in Social Business at our house yesterday. Regular flashes of Tim's marvellous sense of humour indicate that he too, is much better.

I've been happily engaged with getting the literacy program at Salvazione School up and running. The Link promises to be a thrilling and healing project.

Suzi, Tim's sister arrives this morning and we all go to Cape Town for James' 21st part on Friday. So much excitement! Nicola has prescribed a Red Bull to give me the energy to enjoy it to the full. I also need to settle to some serious thinking as he has nominated me to speak. A challenge and one I'm delighted (and slightly suprised) to take up.