Hi and Welcome....

The reason for my blog is that Colin had Metastatic Renal Cell Carcinoma (secondary kidney cancer). In addition to this, his eldest brother David died in April 2008, 5 weeks after being diagnosed with Laryngeal Cancer and his elder sister Sue was diagnosed with Lobular Breast Cancer in March 2009. All that said, I am still smiling and trying to be up beat about everything because if I wasn’t I don’t think I would cope as well as I have so far. Sadly Colin passed away on 23rd Dec 2009.

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Thursday, 26 March 2009

Manchester here we come ...

Well we have heard from the Prof at Christies Hospital, Manchester and Colin has an appointment at 8.30am on Thurs 2nd April for a CT scan and meeting with Prof H about the HD IL-2 treatment which they hope to commence on 20th April. So its off to Manchester on Wed night for us as the appt is at 8.30 in the morning and trying to get there for 8.30am would be a nightmare on a Thurs morning. M5 and M6 before 8.30, I think not!!!! The Hotel is only £38 for the night including breakfast, a 5 min bus ride from the hospital and a short walk to Rusholme's Curry Mile (Manchester's answer to London's Brick Lane) so that's tea sorted for Wed night!! :-)

Monday, 23 March 2009

Benefits Minefield!!!!

We have just entered the minefield of benefits, which is totally alien to us as we have both always been employed up until Dec 2008 when Colin was made redundant. Colin has been granted DLA (Disability Living Allowance) and he has applied for ESA (Employment Support Allowance) and I will shortly be re applying for Tax Credits as I was not entitled to any between Jan & Mar. The problem we have is knowing which benefits we are entitled to and where to apply for them. So if anyone has any suggestions please let us know. :-)

Wednesday, 18 March 2009

HD-IL2 treatment in Manchester

We have just been told that "Sutent" should be available after "HD IL-2" and we should hear in the next 2 or 3 days from the Professor in Manchester about the "HD IL-2" treatment.
My one main concern about this is that Colin says he doesn't want me to go with him when he has this treatment and I would like to be there to support him, as from what I've read its very nasty and pushes the body to its limits and I don't want him to be on his own when going through this.

Our history so far

It all started in Nov 2003 when he was admitted to hospital and they discovered he had a 5cm mass in his right kidney. Within 3 weeks he had had a Radical Nephrectomy (removal of kidney) and it turned out that he had "Clear Cell Renal Cell Carcinoma". As far as we knew all the cancer cells were contained within the kidney and they were 90% sure that none had escaped, so no further treatment was recommended, apart from regular scans.

That was until in Jan 2007, when at a 5cm mass was discovered in his chest, just above the heart. In March 2007 he had a Thoracotomy (chest operation) to see if they could remove it, but they could only “de-mass” it as it was between the Aorta & left pulmonary artery. The biopsy results confirmed it was Metastatic Renal Cell Carcinoma (secondary kidney cancer).

Another scan in May 2007 showed a couple of masses in his chest and a few small nodules in his lungs. He was prescribed “Sutent” which was refused by our PCT so he was given “Interferon Alpha” which he started self injecting in June 2007. This initially worked, reducing the masses and keeping them stable for 18 months, until Jan 2009 when a scan showed that they had started growing again, and there were new nodules in both lungs.

His consultant reapplied for “Sutent” which again was refused by our PCT. So we investigated drug trials, one of which was “high dose Interleukin-2” "HD IL-2" which is available in Manchester and discovered that Colin is an ideal candidate for this, but it is not a very nice treatment. Then in March 2009 the PCT agreed to fund “Sutent” for Colin, which is brilliant news.

We have decided to go for the “HD IL-2” treatment in Manchester first and keep the option of “Sutent” available for use if he doesn’t respond very well to the “HD IL-2”.