Appointments and even more appointments

After having had both Flu jabs (normal and swine) and checked that the scar from his operation had completely healed, Colin started taking Sutent again on 20th November.
On Monday 23rd we went to ROH (Royal Orthopaedic Hospital) for Colin's first check up after his Op.

When we arrived in the car park it was very windy and as Col let go of his wheels (walking aid) to put on his coat - they proceeded to go off down the car park on their own with Col trying to run after them shouting (very quietly) HELP!!!! I didn't know anything was wrong as I was getting his phone out of the car for him until I saw him trying to catch up with them (not very successfully) HA HA!!! Thanks to a nice lady who was crossing the car park they didn't hit any cars on their travels and the man in the security cabin might have stopped them if he hadn't been laughing so much.

Anyway back to the reason we were there, first he had to go for an x-ray and then we saw the Oncology Nurse who checked Colin's reflex's - yes there were some - ha ha, she said he is doing very well and should gain muscle tone back in his thighs eventually.



We now have photos of Colin's spine and the work that Mr Stirling did to it, the first is of his spine from the back and shows the titanium bracket and the second is the side view which shows the bracket and two bright patches which are cement.



We have also been to the QE today to see Prof Nick James to discuss Colin's treatment plan and starting a course of 10 fractions Radiotherapy on the spine as soon as possible. He suggested having the Radiotherapy in the two week break between cycles of Sutent but I pointed out that that would be over Christmas and New Year and probably not a good time. He agreed with this and is arranging for a Planning Meeting hopefully for next week with a CT Scan asap and starting the Radiotherapy sessions very soon.

Steroids & Sutent

The steroids seem to be doing their job and Colin is back to his normal self (normal as far as Colin & steroids are concerned).

His back has healed well and his walking is improving tremendously (he can almost keep up with me now) which means I don't have to keep stopping and waiting for him to catch me up ;)

Now that his back has healed and he has had his flu & swine flu jabs he should be able to start taking Sutent again, just waiting to hear from Dr P if that's OK.

Health Update

Where do I start????

We came back from camping on 2nd Sept, then on 4/5th Sept I had a minor heart attack and ended up being in hospital until 10th Sept during which time I had an angiogram and angioplasty done. While in hospital I had stomach/abdominal pain, which after a CT and utrasound scan they couldn't find a reason for except maybe it was the tablets I was taking, so they told me to stop one of the tablets(cholesterol) and discharged me on the Thurs day afternoon. By the Friday afternoon I was in so much pain I went to my GP and she sent me straight back to A&E with a letter for the Surgical Assessment Unit, they did an X-ray, changed a couple of my tablets and discharged me on the Sunday afternoon (still with stomach/abdominal pain, but with soluble paracetamol for the pain). Even now I am still getting pain and nobody seems to know why or what is causing it but it is bearable pain now, I just wish it wasn't there at all.

Now for the update on Colin.
He had a CT scan on Mon 7th Sept and an outpatient appointment with Dr P on 24th, but in the middle of these, last Thursday his back started hurting and by Friday he was in bed and pinching my paracetamol. On the Saturday his left arm and right leg weren't working properly so we decided he should start taking his steroids(dexamethasone) again and we found so Co-codamol. On Tuesday he managed to get up with some help and go to GPs and she prescribed Co-dydramol and suggested upping his steroids to 2 a day. We had a lift to the QE on Thursday to see Dr P. When we saw him he explained that the CT scan showed some abnormalities on the lower spine and he has requested a bone scan, he has now started Colin on Sutent, prescribed Tramidol for the back pain and will see him again in 3 weeks.

None of the painkillers seem to be doing anything so when I went back to see our GP on Friday she prescribed Oramorph (liquid morphine) and upped the steroids to 4 a day. Hopefully this will help in time but at present Colin is in bed and still in a lot pain.

Away Camping...

Radiotherapy is over and done with, as because the tumours are on the brain they only like to use Radiotherapy once as any more could kill brain cells ( and as we all know Colin didn't have many to start with :-) ). He has been advised to wean himself off the steroids by lowering them by 1 tablet every five days unless any of the symptoms reappear and in that case he can increase them again. Hopefully the symptoms won't reappear and he will go back to his old self (mainly his tolerance).
He has been in touch with Dr P in Birmingham and will be having a CT scan shortly and then should be starting on Sutent, but before that we are going on holiday.
The holiday is a 10 day camping trip to Saunton, North Devon with his sisters Sue & Rachel and our nieces Laura & Holly so we should have a great time. Kieran will have someone to play with as Holly and him get on well and if Sue & Colin get to grumpy Rachel & I will leave them to it and go off somewhere with the kids.
Colin is like a big kid himself at the moment buying camping stuff and is very excited, partly I think because it's our first camping trip with Kieran.
If I survive the next 10 days with that lot it'll be a miracle, but it might just be fun and give us time to chill out, I think we need it after the last few weeks!!!!!

Round of Radiotherapy over

Colin has finished his round of Radiotherapy and now has a two week wait until he sees a Consultant at Worcester, he has an Appt for 21st August.

As well as the above Appt he will also be having a CT Scan of his chest in Birmingham to see if the HD IL-2 treatment had any effect and as a baseline for starting Sutent. Hopefully the scan will be in two weeks but not on the 21st ;) and then he will have an outpatient Appt with Dr P.

That's if I don't deal with him first, as his tolerance levels are very low and he is snapping at everything and can't handle any change in plans even very slight ones. I am having to try very hard not to snap back, but Kieran doesn't understand this and keeps getting told off by Colin for minor things - poor child.

I did mention this to our GP today and she said it can be a side effect of the Dexamethasone (steroid) his is on, so I will try and put up with it and not snap back/or punch him :-/

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”.