Helen, I'm the opposite, my wife Peg has green fingers, I'm the grim reaper in the garden, everything I touch dies off!
Feeling a bit better this afternoon, lovely roast chicken and home grown veg for lunch. 🙂
Thanks helen, the CNS said expect to feel rough for a couple of days, have a couple of days of feeling ok'ish and then the rest of week neutropenic.
I don't feel so bad this morning but can still not great.
t
Wendy that really sucks. I've been following your blog, what ups and downs you're facing. Hang in there and good luck with the triathlon. I am in awe.
t.
@ Mavis, Dai
thanks for the kind words. Had a bit of a dodgy night, I was tolerating it quite well, and then I started feeling quite crappy. Well very crappy to be more accurate. I crawled to bed around 9.30 hoping to sleep it off but no such luck. As part of the treatment I'd been given an anti-nausea drip which came cut with a dose of steroids. These assured no sleep so I could benefit in full from feeling crap all night. The best way of describing it was like having a really, really bad hangover mixed in with hyperactivity.
Cyclophosphamide is derived from mustard gas and boy did it feel like it last night, with no disrespect to the fallen in WW1.
As Tom senior would say 'onwards and upwards'.
t.
Thanks for the advice Peter 🙂
Yes I just about managed a trip to the loo yesterday with the dreaded drip stand with one arm hooked up. Two arms hooked up must be a real challenge.
@Helen
When I had my cycles of PAD I lost about 50% of my hair due to the Adriamycin. I had the remainder shaved off but I have got a lovely selection of hats to hand 🙂
@Jean,
I'm half irish so that goes well with me 🙂
@Andrea, Tony, Tom
Thanks for your kind words, really appreciated
@Ali
No they do it in an ambulatory care unit at UCLH, the actual Cyclophosphamide infusion took 2 hours, but by the time they'd done blood tests, anti-nausea meds etc. it took most of the morning. I'm home now and feeling ok, but am prepared for side effects to kick in and also of course going 'neutropenic' later in the week.
Mandy good luck with it all. You're a few weeks ahead of me. I'm starting my SCT treatment next week.
Say hello to Liverpool for me, many happy memories of the city. From where you are do you get a view of the mersey?
This is how NICE works, as far as I understand it operates on guidance from a mixture of health care specialists, local and national government, bean counters and patients advisory groups.
http://www.nice.org.uk/aboutnice/howwework/how_we_work.jsp
We are internationally recognised for the way in which we develop our recommendations, a rigorous process that is centred on using the best available evidence and includes the views of experts, patients and carers, and industry.
We do not decide on the topics for our guidance and appraisals. Instead, topics are referred to us by the
Department of Health.
Topics are selected on the basis of a number of factors, including the burden of disease, the impact on resources, and whether there is inappropriate variation in practice across the country.
Our guidance is then created by independent and unbiased advisory committees.
Take our clinical guidelines for example, where we commission four external centres and one internal centre to produce them on our behalf, according to the topic area.
The National Clinical Guideline Centre is the largest of these centres; it was established in 2009 from a merger of 4 smaller guideline-producing centres specialising in acute care, chronic conditions, primary care, and nursing and supportive care.
The other three external centres that currently produce guidance are the National Collaborating Centre for Cancer, the National Collaborating Centre for Women´s and Children´s Health, and the National Collaborating Centre for Mental Health.
Staying up-to-date
The world of health and medicine is a fast moving one, with thousands of research papers published every year. To keep pace with the changes, we make sure that our guidance is regularly reviewed to remain up-to-date and to take into account any new evidence that may influence our recommendations.
Open and transparent
We have an open and transparent consultation process throughout the development of our guidance and quality standards which allows individuals, patient groups, charities and industry to comment on our recommendations.
In cases where we have to reject the use of a drug on the grounds of cost, we encourage drug companies to submit a patient-access scheme. Patient access schemes are special ways pharmaceutical companies can propose to enable patients to gain access to high costs drugs. This can help lower the overall cost of a drug on the NHS.
Have your say
We value the input of patients, carers and the general public in the development of our guidance and other products. By involving the very people for whom the guidance will be relevant, we put the needs and preferences of patients and the public at the heart of our work.
In 2002 we established the Citizens Council, the UK's first advisory body made up entirely of members of the public from across the UK.
The Citizens Council has produced a range of reports on challenging issues facing NICE, including the use of incentives to encourage people to live a healthy lifestyle.
The council's recommendations and conclusions have been incorporated into a document called Social Value Judgements which describes the principles that NICE and its advisory bodies should use when making decisions about the clinical and cost effectiveness of interventions.
Jean I don't think it would translate to kindle very well so you're better off with the paperback.
I bought the book mentioned on that program yesterday [i]Zest for Life: The Mediterranean Anti-Cancer Diet [/i]. Looks quite good with some very nice recipes.
My opinion on the food-cancer link is that despite there being not a huge amount of medical evidence, it's likely. It's also good for your general health to eat in a more considered way.
What's not to lose.
Ha, ha. Helen you're [i]well dexed up,[/i] as the kids on the street would say 🙂
I forgot to mention about the injection site bruises. Yes mine came up lovely for every dose. Occasionally itchy but aside from that nothing much to worry about.
Here is the perspective from UCLH.
We're spoilt rotten with the new Macmillan Cancer centre, as it's dead flashy and everything is brand new. The chemo suite has a floor of it's own which is open-plan with big comfy 'designer' chairs and lots of light and space. I think the best thing i can say about it, is that it doesn't look or feel like a hospital, but rather a 'chill out area' for some flashy club or architects office.
There's a nice tea lady who comes round and offers tea, biscuits and sandwiches. On the whole, the staff were excellent, friendly and thoughtful.
Waiting times varied. Sometimes I had to wait a couple of hours for an injection that took 5 minutes including observations. Towards the end of my third cycle though they had instigated a new protocol. As Velcade is given very quickly they processed us as soon as we turned up, rather than let us wait in the 'queue' so I could be in and out in as little as 15 minutes (excluding blood test which is taken in 'the basement').
tom
Helen regarding driving I would check with the consultants. I do drive but since I had the plasmacytoma in my shoulder I haven't really bothered as it is uncomfortable.
I would say that most of the time I would have been fine to drive, the odd day I wouldn't have wanted to because I wasn't feeling well enough. But do check.
Helen I can only give my experiences with PAD (Velcade, Adriamycin, Dex).
I had 3 cycles and worked full-time throughout. It wasn't really until the 3rd cycle that I suffered what i call my 'sofa days', i.e. feeling drained and a bit nauseous and this tended to last a couple of days post the velcade injection.
Dai I agree with a lot of what you say but I think it's fair to say that trials are run for the benefit of research and the patient community that will ultimately benefit them. Trials have to be designed in a certain way to produce useable or useful knowledge about the drugs being tested. If you have too many patients with different types or progressions of myeloma, it becomes very difficult to make sense of the data produced.
However I do think that many of the phase 3 trials are probably not necessary and I firmly believe that alongside the trial regimes patients like us (MM) should have a right to unlicensed or new treatments outside of testing regimes. There was a legal case in the US trying to force the FDA to do this but it failed.
Basically the question isn't 'why aren't more patients allowed onto trials', it's 'why aren't seriously ill myeloma patients allowed early access to new treatments'. We need rigorous testing regimes but that doesn't' rule out early access to new treatments alongside, but not in, testing.
As for the FDA vs European drugs agency, it cuts both ways. There has been a lot of criticism of the FDA because it is quite close to drug companies and there have been issues and cases of undue influence by corporate organisations over the licensing programs. Some of the stuff that the FDA has licensed in the past is unsafe. That's why the EDA doesn't automatically wave through their findings. It's frustrating I agree, but understandable.
Trials aren't of course just run by drugs companies but are carried out by medical researchers at university hospitals such as UCLH. Many of the drugs including kyprolis for example also originate in University research but are developed outside of university by drug companies. This is interesting because drug companies benefit from publicly funded research and then screw the public by making the drugs hideously expensive…
Eva thanks for the suggestions really helpful. I'm going into UCLH today to see a doctor and will press to get an appointment with an eye specialist.
