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.

Post Op

Colin had his spinal operation yesterday and as far as we know it all went to plan. He seems to be recovering quite well and has some feeling back in his right thigh already which is a good sign. He has an epidural in place at present so isn't in any pain.



Here is an example of a titanium bracket on the spine. Colin has had something similar to this done.







What Colin's back looks like at present, the top bit is just holding the epidural tube in place.
The bottom bit is where they operated.










And he has a web shooter (like spiderman)







On a more cheerful note Sue has been invited on This Morning to talk about Breast Cancer and her Blog with Dr Chris as it is Breast Cancer Awareness Month

Operation Time

Since my last update on Thursday Colin has had lots of scans and x-rays and has been discussed between Dr P at QE (Queen Elizabeth Hospital) and Orthopaedic Consultant, Mr Stirling at ROH (Royal Orthopaedic Hospital).

Tomorrow he will be going to QE for Embolization of lower spinal area, to prevent too much bleeding which is the main risk from RCC then on Wednesday Mr Stirling will operate on the tumors on the lower spine removing them, then will rebuild the spinal bone with titanium and cement so column doesn't collapse hopefully leaving Colin pain free.

I am now feeling much better and able to do a bit more (not too much though) and I am allowed to drive again which make life so much easier as I don't have to rely on/ask people for lifts any more.
I would like to say a BIG Thank You to all the people who gave me lifts etc It was much needed and appreciated.

Now for the amusing bits: While I was in hospital Colin brought in the mains charger for iphone/ipod for me to charge my ipod, when I went back to hospital I knew I didn't take it with me. We had been looking for it for 2 weeks since then and really needed it on Thursday so Colin could charge his phone whilst in hospital, still couldn't find it so on Friday I bought a new one. Within an hour of getting home from shopping - low and behold what did I find in a carrier bag on the floor, YES the charger that I had been looking for everywhere.
Also because I couldn't drive last week I did an online shop at ASDA to be delivered between 4 & 6 pm on Thursday, not a problem you might think. But then we get informed that the Ambulance will be coming for Colin between 3 & 7 pm on Thursday, so what are the chances of them turning up at the same time???
Well just in case that happened I asked my Mum to come round for 4 pm, good job I did as Ambulance arrived at 4:10 and ASDA delivery arrived at: you guessed it 4:15.

So amusing things do happen even when you don't expect it and they make you laugh and that is a good thing as we all need to laugh occasionally, especially in this family.

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.

End of Round 1 - Part 2

Col didn't have any more doses after number 8 so I went and picked him up today. His sister Rachel came with me, it was nice to have company other than Kieran in the car. Col was very tired again when we picked him up but didn't look quite as drained as he did last time.
I have been relegated to sleeping in the basement again as he has come home with a cough like he did last time (good job we still have the spare bed).
Now its a 5 week wait until his CT scan to see if its all been worth it. Fingers etc crossed that it has worked, only if it has worked it means going through it all again in a couple of months, but it will be worth it in the long term.
Thanks to everyone for their support & e-messages.

Round 1 Part 2 - Day 3

Col had a good night last night. He had dose 4 at 5:45am and has just had dose 5 at 9.45pm "could have had it an hour and a half ago, but they were either too busy or forgot me" was the text I got. I said they must have been busy as they couldn't forget Col, that's an impossibility.
I don't think I'm going to get the bed to myself at all this week as Kieran couldn't get to sleep last night in his own bed and is asleep in my bed now. I think he is missing his Dad although he won't admit to it, but that's 8 year olds for you.

Round 1 Part 2 - Day 2

Thanks to everyone who sent us anniversary wishes.
Colin had the 2nd dose at 1am and then had to wait until 6pm for the 3rd dose as his pulse was to high - he really should stop watching those nurses!!!
I didn't have any visitors last night as Kieran's pillow didn't attack him this time.
Rachel & Laura came round for tea tonight, which was really nice as adult conversation is needed occasionally (I was talking about Laura) when the only company you have in the evening is an 8 year old.

Seconds out - Round 1 Part 2

Here starts another week of worry/anxiety!!! I took Colin to the train station earlier as I'm making him catch the train to Manchester this time - only joking he is catching the train because it's a Bank Holiday and the traffic will be horrible. He has recovered fairly well from round 1, apart from his skin itching due to using the hibiscrub, I think he will be happy when he can stop using it.
They say the 2nd lot is worse than the first, here's hoping its not!!! fingers etc. crossed.
On the plus side I get to sleep in my own bed for the first time in over a week which will be strange.
I will try and update my blog each day with how Col is doing so watch this space.

End of Round 1- Part 1

I picked Colin up from Christie's yesterday afternoon and then took Kieran to see where Manchester United play as it is not very far from Christie's and Kieran supports them. He was very excited and couldn't wait to go. It was an expensive afternoon as when we got there he spotted the club shop - a shirt, baseball cap, football & shinpads later and my purse was a lot lighter but he was happy and we will (hopefully) never have to go again.
Colin was very tired when I picked him up as I don't think he's had much sleep in the last week and wasn't telling me the whole story of how he was when I was phoning/texting him during the week. Hopefully a week at home resting will be enough for him to regain his strength in time for round 2 starting on 4th May.
It's a good job we have a basement with a spare bed in it, as Colin couldn't get comfortable last night so after an hour and a half I decided to go downstairs so that we could both get some sleep as I had to go to work today, I think I will go straight downstairs tonight :-)

Treatment 1 - Day 5

Colin had dose 8 at 2am then dose 9 at 11.45 all going ok apart from Colin now has constipation, hopefully some sennacot will sort that out and he will get dose 10 this evening. I have received the polo shirts I ordered for race for life and am now planning what to put on them. If anyone wants to sponsor me my link is http://www.raceforlifesponsorme.org/colswife which is organised by Cancer Research UK. Hopefully we will be picking Colin up from Manchester on Sunday as Kieran is looking forward to seeing his Dad and has missed him this week. Again thanks for all your support and good wishes.

Treatment 1 - Day 4

Not quite as good a day today:-(. Colin didn't have a very good night last night and has had a high temperature and pulse (side effect) most of the day so didn't get to have dose 7 until about 15.30 today but hopefully will be able to have no 8 around midnight if everything is normal.
Colin asked me to thank everyone for their messages by E-greeting, Text and via me. Well I think that's what he said anyway, his voice is very croaky so its difficult to understand him, but that's nothing new!!!.
I had a good nights sleep last night - got the bed all to myself with no 8 year old visitors this time, can we do the same tonight please Kieran!!!!

Treatment 1 - Day 3

3 more doses done, he's now had 6 out of the 14 and only had mild side effects - rigors and vomitted once last night. So so far so good, hopefully it will stay that way.
Thanks for all your messages of support they are greatly appreciated.
Hopefully I won't get woken up by Kieran tonight as I'm not used to being woken up at 4am, 6.45am is quite early enough thanks :-).

Treatment 1 - Day 2

Well Colin has had 3 of the 14 doses of HD IL-2 and so far hasn't had many side effects, which is a good thing and hopefully will continue.
I thought I would have the bed all to myself (no-one snoring next to me) while Colin is in Manchester, but no I get woken at 4 this morning by Kieran asking if he can sleep in with me because he had a nightmare and guess what - he snores too just my luck :).
I will up date my blog as and when I hear from him & have a spare 5 mins :-)

Treatment day has arrived - Part 2

Finally left home at 6.30am (I was ready at 6am). The journey on M5 & M6 was fine, no hold ups going north, I'm very glad we weren't going south though. Got to the M56 at about 8am and that's where we hit the traffic, it took us 45mins from there to get to Christie's. This time we actually found one of the patient/visitor car parks with spaces so parked up and paid the £2.50 for up to 8 hours parking (not bad for an NHS car park).

We then went to find the Day Ward, where Colin had his PICC line ((Peripherally Inserted Central venous Catheter) in plain english the tube they use to administer the drugs) inserted and an X-ray to make sure it was in the right place.
This was all done by 11am, then we were informed they were just waiting for a bed for Colin. After an hour of waiting they said we could go and get some lunch and they would ring us when they had a bed available.

We went for a walk and found a Subway, so had lunch there then walked back to the hospital, sat in the garden there for a while in the lovely sunshine. Still no bed so decided to go to the car and have a nap (5am start remember).

At about 4.30pm Colin went back to the hospital to see if there was any news on a bed and was told there would be one available at about 5.30pm, so we did a quick shopping trip to Sainsbury's to get squash etc. and then went up to the ward and his room still wasn't ready. He eventually got into his room at 6.10pm, just in time for tea.
I left at 7pm and did the lovely 2 hour drive back home.

If anyone wants to send him an e-greeting here is a link:
http://www.christie.nhs.uk/egreeting/default.aspx
He is on Ward 11.

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”.