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.
Just read your blog Margie. Yet another hurdle to overcome. I am please you have got the Ipi as I have heard so much about it. I didn't realize it was so difficult to get as Sue had mentioned it 18 months ago I thought it was easily available.
ReplyDeleteHoping you have success with it and it's as good as they claim.
Lots of love and praying this is the answer for you.
Hi Margi,
ReplyDeleteThis is Vesi-just re-found your blog...I am so happy to see that in the midst of all this you are having a great time with you family! Hopefully things will get sorted out quickly with the ipi and you get to receive it soon!