Tuesday, 29 November 2011

Latest update

Unfortunately Wednesdays consultation has been cancelled due to the delayed arrival of my gene test results.
The earliest I will hear is either Friday or next Monday. Therefore whatever the result my next appointment will be on Wednesday the 7th of December. This is for a CT scan and hopefully other tests, but only if I am suitable for this drug trial. If I don't have the mutant gene needed, we will have discussions on the other treatments available to me.
I am still working but tiredness is becoming more an every day issue. I also find more lumps popping up on a regular basis, which is inevitable as I am not having any treatment or drugs at the moment.
My spirits are still high and I am sleeping very well and would like to thank you all again for your continued support.
Love & hugs Lynn xx

Friday, 18 November 2011

A part of me is now winging its way to the USA

Well I signed the consent form yesterday to go ahead with the proposed clinical trial. I phoned today to make sure it had been received and can confirm that the process has begun. I have an appointment booked at Addenbrookes for Wed 30th to hear if I have the necessary gene. However this may be delayed if the results are not back from USA as it does take 2 to 3 weeks. If I do have the gene then they have also booked an appointment for me on Wed 7th Dec for some scans so that the process can start as quickly as possible. I would also need some other tests such as an ECG before I can begin taking the drugs. I would be taking 4 tablets in the morning and 4 at night and there are possible side effects of nausea, tiredness, rash, sensitivity to light, joint or muscle pain, possible alteration of the heart activity. There is also a 25 to 30 percent chance of developing squamous cell carcinoma of the skin but these can be removed. I will have checks once a month and the first one will be a physcal exam, bloods, CT, ECG. A head and neck examinaton every 3 months, head to toe dermatologist exam every 3 months, CT or MRI every 2 months initially, and an ECG for the first 3 months and then every 3 months.

The study so far has given an eighty percent chance of slowing the spread or even regression of the cancer. However it only seems to work for about ten months but hopefully with more research this can be increased.

If I do not have the gene then there are other proposed layers of treatment as the consultant called them but I will only go into that when and if I need to.

Feeling better day on day as there has been lots to deal with over the last month. Still not feeling completely healthy but it's not really surprising. Looking forward to a lovely weekend with my Mum, Dad and brother and the rest of my fantastic family.

Wednesday, 16 November 2011

Details of consultation at Addenbrookes

Spirits a lot better than yesterday after our visit with the oncologist. Don't get me wrong there is no magic cure for what I have, however plans are now in place to try and control or even reduce the cancer. He stated that I have low volume cancer in my right lung and a similar amount on my liver. There is a big possibility I have had this for some time, even before the lumps appeared. We now have a better understanding of why the plastic surgeon's attitude was the way it was. We have always been of the opinion that any lumps have to be removed quickly, but this is only for the initial stage 1/2  melanoma, after the secondary spread any removal is purely for cosmetic purposes. Therefore the surgery booked for Dec 1st is to be cancelled at this stage.

There is no recognised effective treatment for melanoma, Chemo has very little effect on the tumours so clinical trials are the way forward. The plan for my treatment is as follows depending on biopsy results.
My original melanoma biopsy will be sent to the USA to check for a specific gene mutation called BRAF V600E. If I have this gene I will qualify for the clinical trial using a drug called Vemurafenib which is a test drug for blocking protein growth in cancer cells.

Sorry, very tired and I will update more later as there is alot of info, going to bed a lot more content.
Lots of love xxxx

Tuesday, 15 November 2011

D Day tomorrow

Can' t wait for tomorrow but the enormity of this whole adventure is really kicking in. I had my first day back at work since I broke the news and it was tough but at the same time my friends & colleagues  were wonderful. Thanks to all of you for being so supportive at this horrendous time. My Mum came over for lunch which was wonderful and she was then able to meet many of the people who I work with.

I have been trying desperately hard to be strong for myself and all those around me and I am afraid that I did break down tonight but I needed to! Unfortunately Brian's sweater is very damp from all the tears but then he loves me very much and so he can cope with that! Anyway I have now pulled myself together and I wanted to thank those of you who have commented on my blog or sent me an email - they all mean so much to me. One of my friend's now also has me on green tea and watercress to get my immune system up so thank you Joy. I am back in the office tomorrow morning so Gina you can give me a good luck hug and I will continue to twinkle!

Brian and I will leave for Addenbrookes tomorrow after lunch and I hope we will be able to update tomorrow night if we are not too exhausted.  Love to you all. xxx

Monday, 14 November 2011

Plastic surgeon consultation

Went for the consult with the plastic surgeon today. Very dispassionate women who scared me more than she should have. Almost what is the point? Asked me which lump was causing me the most discomfort instead of simply setting dates for removal of all the lumps.

Procedure will be with a local anesthetic and we have asked for all three to be removed, but they will not use the wide excision method, so recovery should not be too bad. Now on the waiting list for surgery.

She went onto imply that more lumps or Melanoma metastasis were inevitable.

Finally, she was very surprised by how my melanoma had spread, through my blood rather than the usual route of the lymph system.

Next appointment is on Wednesday at Addenbrookes with the Oncologist.

My only symptoms at the moment are these bloody lumps and I feel tired and a little chesty.
I can not wait for the treatment to begin!