Homeward bound

Thought I would just try to put a few words down whilst it was all still fresh in my mind .
I actually feel far more positive about my CD that I have in a little while. I don't cope very well with the uncertainty of it all, and like a plan of action.

It seems as though after meeting the very lovely Dr AG ( head of oncology and genetics ) or as she said, "the poison and pills lady", that we have a formulation of a plan.

There are three courses of action, well four if you count radiotherapy. Firstly there is chemotherapy , but due to my low white cells this is not the best option for me at this present time.

There are PARP inhibitors ( similar to chemo that I mentioned earlier) , but this also I don't really stand a chance of getting on because of my suppressed immune system.

Plus the fact that there is a very real risk that with treatment my bone marrow cells do not recover at all, and could therefore lead to leukaemia , which really would put a very large spanner in the works.

Thirdly there is something called Hormone treatment, and it works well with certain tumours that are receptive to oestrogen. DR AG has already looked back at my old original tumour and tested it, finding that it was quite highly responsive. The hormone treatment stops the oestrogen and therefore the tumour feeding and growing. In some cases it halts it, in others it completely shrinks it.

You take the hormone treatment via tablets ( cue happy face) . Side effects are hot flushes, mood swings etc, ( well used to that already thank you) and sometimes joint pains.

Dr AG was very informative and explained a lot about the BRCA 2 gene, I said I was surprised and how recently they had discovered it ( 1992) I thought, but she said it was later '92 was BRCA 1 but '94 was the BRCA 2 .

And although it's a bit of a double edged sword in many ways having the gene means the cancer works in a slightly different way to ladies without the gene.

The tumours tend to be more localised and less scattered, so if at all possible can be treated with radiotherapy. Ladies with BRCA 2 are often very chemo sensitive so the drugs are usually very effective.

She suggested that I have a bone marrow test ( in Jersey) we really need to know whether I am making lots of baby bone marrow cells that maybe don't fully develop, or maybe I don't have many in the first place, or the ones I have are not high standard.

I could have just always had a low white cell count and not known.

Either way it's a good idea to see what's going on so we are better informed for further treatments.

With all this information we have the basis of a plan , firstly Dr AG ( and she's far from a drag!) is going to speak to Dr AT ( my radiotherapy doctor, and not as my mum used to say "drat"!) to see if it's feasible for me to have radiotherapy on the tumour in my neck.

If she says yes, then I would need a PET scan ( at the Marsden ) to see if that was the only tumour visible - if it is then she will draw me up a treatment plan for radiotherapy . If there are other tumours that show up on the scan then we will go straight onto hormone therapy.

I would meet with AG again for a six week prescription of a tablet to be taken every day . I can get the tablets in Jersey and even my doctor can prescribe them.
I would then have another scan to see if the tumour (s) have changed in any way. If they haven't there is another hormone drug to try, so all is not lost.

I think one of them is tamoxifen ( breast cancer people take) the other letrozole.

I could be on them for sometime, but if it's working all well and good.

There is one more subject we touched on, and its immunotherapy , there are some new drugs that have been used to treat melanoma, very successfully . Also used on cancer in the kidneys, and now ovarian, it's still early stages but as the doctor said in a couple of years time maybe that option will be available to me. It's only just come off trial and available now on the NHS.

I have to say that I was more than a little apprehensive going into the meeting and thought that I would be met with a certain degree of resignation and inevitability that the disease was too far spread and there was little more they could do, but we listened to lots of very positive points, and real hope that I still had options for further treatment.

Steve was his usual stoic self, and asked questions too, just as well as its rather intense one on one. The sun was shining and so far the flight and accommodation were all fine.

The love, support and prayers continue to sustain me, and I never feel as if I am alone in this particular challenging time in my life, there is always someone out there for me.

Thank you x






- Posted using BlogPress from my iPad

Location:Gatwick Express ...