11th January 2010 – Ian’s hormone levels continue to drop although they are still much higher than “normal”. He is now on his 3rd treatment of “Sutent” and the now familiar side effects have returned but he is tolerating it reasonably well.

Some of you may have seen the recent article in the Daily Mail – the article stated £20,000 had been raised in 3 weeks (!) The actual fund-raising drive ran from 1st Sept. – 29th Oct. 2009 so where the Daily Mail got “3 weeks” from I have no idea! I think the £20,000 quoted included the fund-raising (which now stands at £12,668, the money our families paid initially to get Ian on “Sutent” asap, and the one month’s supply of the drug we persuaded Pfizer (who make Sutent) to provide.

There will also be an article in “That’s Life” magazine soon – the payment we will receive for the article we have asked to be donated to the Pamela Northcott Fund http://www.pamelanorthcottfund.org.uk/

"Week 6 - Ian felt well and we had great news from the consultant - all the recent tests have shown a dramatic reduction in Ian's hormone levels - so we have bio-chemical evidence "Sutent" is working!"

The scan results on 21/12/209 were extremely impressive – much better than we had anticipated. As you may have seen in the local press, many of Ian’s tumours have disappeared and the others have reduced in size. He started his 3rd course of Sutent on 1st January 2010 and has had the expected side effects. His blood pressure has increased slightly as has his pulse rate and pain and he is currently suffering from fatigue.

However – we thoroughly enjoyed a trip to the cinema last night and can highly recommend the Cinema De Lux at Derby for big, comfy seats with plenty of leg room and waitress service whilst watching the film – proper posh!

We have made a complaint to the Parliamentary Health Service Ombudsman regarding Ian’s treatment by Derbyshire County PCT. If anyone has access to medical lawyers please get in touch, we believe we have valid grounds for a complaint against the PCT and their continued obfuscation and fabrication of the facts is becoming exasperating. We are not seeking financial compensation, just an apology would be nice and the admission that they did make many mistakes when looking at Ian’s case. Compensation is a double edged sword, it never comes out of the managers’ wages – it just detracts from patient care and this is not morally acceptable to us.

Happy 2010 to you all and thank you for your continued support.

Keep in touch via email cromford@googlemail.com

or text/phone 07807 486 594

& keep an eye on Jane’s blog http://wonkyknits.blogspot.com

Ian’s first month on Sutent
29.10.09
As a guide to others who may be considering taking Sutent (Sunitinib) we thought it may be useful to describe Ian’s personal experience of the drug.
However, everyone is different and will respond differently depending on their particular type of cancer, their general health and the reasons they are prescribed Sutent.
NB. Sutent is not chemotherapy it is a “targeted agent” which inhibits particular enzymes in the body. For further information please speak to your specialist or see:
http://www.sutent.com/
Week 1: Nausea and increased fatigue (as expected) but nothing too dramatic. Blood pressure and pulse remain high and erratic.
Week 2: Nausea subsided but fatigue increased. Sore hands and feet. Loss of taste. Loss of appetite. Erratic body temperature.
Heat intolerance & excessive sweating reduced. Blood pressure and pulse more stable. (Ian managed a (seated) shower & shave independently!)
Week 3: (Sunday) Loss of consciousness & no pulse resulting in a 999 call and a night in the emergency management unit at Chesterfield Royal Hospital. (Many thanks to the paramedics who arrived in minutes and Liz the nurse in A&E)
Increased fatigue. Skin now peeling on hands and feet – very sore. Loss of appetite and no sense of taste.
Reduction in palpitations, sweating and heat intolerance. Blood pressure and heart rate stable and within normal limits.
Medication (beta blockers) to control blood pressure and heart rate reduced.
(Tuesday) High temperature (38.1) resulting in a trip to Weston Park Hospital, Sheffield. Infection diagnosed and antibiotics prescribed. Pain increased, particularly in joints & muscles: morphine increased.
Week 4: (Monday night – Thursday night) Severe pain – morphine increased again. Joints hot and swollen, increased pain in muscles, sore feet & hands, unable to sit, stand, etc.. (thank goodness for a bed downstairs and wet-wipes!)
(Friday – Sunday) Drugs (Phenoxybenzamine, Propanolol, Sevredol, Omeprazole, MST, Sutent, Metoclopramide, Mirtazapine, Movicol, Paracetamol, Ibuprofen, Flucloxicillin, Senna) staggered throughout day/night in an attempt to make pain more manageable and avoid Ian’s stomach bleeding!
Blood pressure remains stable and within normal limits – all the symptoms of excessive hormone production have reduced significantly – suggesting Sutent is doing what it says on the tin!
Week 5: Sutent finished for 2 weeks.
Blood pressure low, causing dizziness. Pain still severe, especially in legs & feet.
Thursday – Ian felt well and went for a drive
Friday – felt well
Saturday – Ian felt well enough to sit around Chatsworth whilst I took photos of the sculptures!

Ian’s 2nd month on “sutent”
Week 1: Felt well for the first 5 days then severe pain kicked in. At least we were expecting it this time.

A peculiar jaw tremor/ chattering teeth symptom has occurred, mostly in the mornings, so Ian is now taking the Sutent tablet at night to see if that helps: its all “trial & error” (probably mostly error on our part…)

The pain is worse in his legs. His knees and ankles are swollen and hot to touch. No raised temperature though (phew…)

Blood pressure remains relatively stable although postural hypotension has been problematic (i.e. when Ian stands his blood pressure drops dramatically and causes him to faint) and his heart has been racing the last few mornings before getting up so he is trying a slow release beta blocker overnight to see if that helps…

Week 2: Remains in pain but mood good; no anxiety, agitation or “impending sense of doom” (a documented symptom of phaeochromocytoma).

Fatigue increased. We are still juggling the drugs to manage the pain but it’s difficult to balance. MST (morphine) is great for pain but it makes it difficult to function, even everyday tasks prove difficult, and sometimes even morphine doesn’t help the pain.

The slow release beta blocker overnight seems to have helped the racing heart rate in the mornings without any noticeable ill-effects during the day.

The postural hypotension has been less severe and Ian hasn’t collapsed this week.

Ian continues to have cold sweats, particularly when eating but otherwise has had no other symptoms of excessive hormone production this week.

Week 3: As above but Ian was able to go out in the car over the weekend – a big improvement!

Week 4: Still fatigued & sweating and blood pressure erratic but not unusually high for Ian. Occasional postural hypotension but no palpitations. Pain more manageable.

Skin problems, loss of taste (documented Sutent side effects) have been less severe this month but some symptoms of excessive hormone production have returned. However, these are difficult to distinguish from the side effects of the multiple other drugs Ian takes daily.

Ian has a CT scan on 14th Dec 2009 and we hope to get the results a week later. Hormone level results will probably be in the New Year (2010) so until then we make the most of each day and take it a day at a time.

3rd Feb 2010 - Ian has just finished his 3rd treatment with Sutent and has coped well with the side effects. We are awaiting a scan in March 2010 then will be re-applying for funding to the PCT. Ian’s adrenalin levels were 20,000 at the last test (reduced from 35,000 since starting Sutent) but normal ranges are less than 490 so he is still a long way off “normal”. Jane is hoping to return to part time work soon as Ian’s life threatening symptoms have reduced now.