Oh and as to cost – I read over the weekend that Revlamid is $425 a pill :-0 obviously that's in America.
Every day is a gift ( and expensive )
Andy
Hi David
First of all I only see one consultant and she has been my consultant since I was diagnosed. Obviously if I have an emergency whilst she is unavailable due to holidays or at another clinic I see another doctor but my consultant is the one that treats my myeloma. I have been referred on to Prof. Jackson at Newcastle due to my myeloma being difficult to treat but up till now he has only taken on an advisory roll but will take a more active roll in my treatment when things start to go wrong.
As to velcade I had 2 cycles of PAD but unfortunately it had no effect on my MM so in my case velcade didn't work, but there again I haven't had any success with any front line treatment. CDT, PAD, and DTpace all failed. I'm now on RCD.
Every day is a gift
Andy
Hi Eve & Slim
Sorry to read your news. I did see you'd posted it in another tread before. It's such a shame that Slim didn't get a decent remission out of the SCT especially after the fight he had to go through to get to SCT in the first place. As you say you did cram a lot into the 6 months whilst Slim was free of MM. Hopefully his next course of treatment will hammer the myeloma back into remission and you will traveling the world again.
Every day is a gift
Andy xx
Hi Dai.
I'm at the day case unit Friday – hopefully I'll bump into Keith there and we'll have a catch up. The last time I saw him was the 8th March and he was just starting on melphalan.
As to your neutrophils mine haven't been over 1.1 for nearly a year now. My readings have hovered between 8 and 1.1 for the last 4 or 5 months but did go as low as 5.8 before that and only then was my treatment amended – I was told to stop the cyclophosphamide for a week. As you know I'm on RCD. Only when my Neuts were around 6 was I told to be extra careful around meeting people. I know everyone reacts to differently to treatment and every bodies circumstances are different but I'm happy when my Neuts are over 1.0 and so is my consultant so much so I'm only having my bloods done every 4 weeks now where as before when my Neuts where below 8 I was on weekly blood tests.
Every day is a gift
All the best
Andy
Hi Helen.
Can't say I've ever felt the need to shave my legs not even for Red Nose Day 😉 as for curly hair well! Not having been through SCT I guess that's one treat I'm going to miss out on. :-/ I remember having hair – just – got some old b&w photos somewhere showing me with hair though I seem to recall I was also running around in shorts at the time. I've saved a fortune over the years on shampoo – every cloud has a silver lining 😀
Andy xxx
Hi Rab
Welcome to the site. Sorry you have to be here but I guess we are all sorry to be here. It's a warm and friendly place to be.
The good news is as the letter states your in complete remission so well done.
Zometa is a bone strengthening drug that also has shown to work against myeloma. I'm sure you'll of been prescribed it to prevent further bone damage. As Tom says usual side effects of zometa are flu like symptoms such as aches etc. these tend to get less as you become accustomed to it. It's given as an infusion usually taking 15-20 mins. I've been on zometa since Oct 2011 and still get some side effects but compared to some other chemo side effects they are quite mild.
I hope you have a long and healthy remission and have a great trip to Skye.
Everyday is a gift
Andy
Hi ner
I'm sorry that your mum has been diagnosed with MM. Welcome to the forum that all of us would prefer not to be members of.
Everyone's journey with this awful disease is different – but the starting point can be very similar – I too started off with back ache and it took 18 months for me to be introduced to the world of multiple myeloma.
At diagnosis my PP's were 49 and I was told I needed a minimum of a 50% reduction in that figure before I would be considered for SCT but the lower the level the better. That was in Oct 2011 and here I am now March 2013 and my PP's are still at 19 after all the usual treatments. I'm currently on RCD cycle 13 just started. My MM has proven very resistant to treatment.
Due to all the treatments I've received and the constant use of chemo my bone marrow is a bit battered to say the least and SCT has all but been ruled out for me, both auto and Allo. Auto (self ) SCT due to me not being able to produce enough stem cells and Allo ( donor ) SCT due to no match being found.
Your mums consultant would like her PP's to be zero before SCT but this isn't necessarily a figure that has to be achieved before SCT. It depends on lots of factors the first of which is the number of cycles of CDT your mum has received. PP's can fall after treatment has finished and before SCT happens. Everyone's journey is different and everyone reacts differently to their treatment.
I'm sure your mum will soon be put forward for SCT and hopefully as a result have a long and healthy remission.
Everyday is a gift
Andy
Tom
Your right there are some right dickheads out there wrapped up in their own little worlds where nothing matters as long as they can breath, drink, smoke or do whatever THEY want. But and it's a Jennifer Lopez sized BUTT there are lots of people who do care. The problem a lot of the caring people have is vocalising their caring side. Some can come out and be blunt and ask how you are and really dig deep into your problems but others want to know but are scared to ask in case it upsets you or them. I find it helpful for me personally when they dig deep – but I appreciate everyone who takes time out to ask after me no matter how little detail they really want to know.
Eve
I know what you mean about being reluctant about giving bad news. It's why I don't post as often as I should. I see the newbies, unfortunately joining all the time, being optimistic about a few rounds of chemo then on to SCT. I keep my thoughts to myself about how it doesn't always work out like that. Some? lots? Have to struggle really hard to get to SCT and endure real hardship to get there – as you know with slim. Some don't get there at all. But that's not the end of it SCT works fantastic for some but not so good for others. This is the reality of MM but I find this reality is hidden away. I think the bad side of treatment should be highlighted as much as the upside but when and how this approached I don't know.
Everyday Is A Gift
Andy x
That's what I've been led to believe Tom.
Mind you it's still a long way off but I'm hoping to get my free Revlamid 😀
Hi Vicki sorry your not well, but it's great that Colin is well enough to look after you for a change. Hopefully you'll both have a long time to recharge your batteries now and get back to some sort of a normal routine.
Hmmm what is a normal routine? I have a routine and I've been on it for over a year now so I guess that's my normal routine now :-/ lol
Oops I'm rambling :-0 I should save that for when I'm at the lakes. 😉
Everyday is a Gift (copyright to Tuesdays support group)
Andy xx
Hi Dai.
Thanks for posting Pats article. I read it on twitter, I follow him as he has some great insights and info, and found it to be very apt. I have found that those around me look at me and think I'm beating MM because I "look well" but I'm not. I know it's a fight I can't win. I'm living with MM I can't even get to SCT I'm on drugs permanently till a miracle cure is found or I die – hoping for former but expecting the later.
When I'm out and about friends say your looking well I feel I should carry my medical notes for them to peruse but I wouldn't be able to lift them :-/
I know this sounds like a rant but it's not. I accept where I am and I do try to remind close family and friends my time is limited and I could go quite suddenly but hey we are all terminal. NO ONE KNOWS how long they have got healthy or not a bus may take out me before MM does. But until that happens I will talk to and inform everyone who cares that to me everyday is a gift (got that from a support group meeting Tuesday ) I will live each of them the best I can. The more it's talked about the easier it becomes. In my humble opinion.
Everyone MM's, carers, family and friends enjoy today but be aware of tomorrow EVERYDAY IS A GIFT. 😀
Sorry if my thoughts upset anyone.
Wishing you all the best
Andy x
Thanks Mavis and Tom.
I've been told by my specialist nurse if I make it to cycle 25 Revlamid will then be supplied free for me to the NHS. Now that's a goal to aim for. 🙂 Though it'll cost the NHS a canny bit to get me there lol.
Andy on Dex :-/
😀
Hiya David.
I hope the blood sample you give today turns out to be a good one and your consultant has the same smile that seems to be permanently on the face of Tom's consultant. Good luck.
All the best.
Andy
Great news Tom my twitter & f/book friend 😉
As Dai says is great that you're here all the time giving support even though your in longer term remission. Could you have stumbled on the secret of long term remission VODKA? I think you should have a little celebration over the w/end 😉
In fact I'm going out tomorrow night and i'm going to have a celebratory drink on your behalf.
Cheers Tom "onwards & upwards"
Andy
Hi Tom.
I'm on just in case anti-virals because I've never had chickenpox! There's a lot of it about at the moment and its very dangerous, or so I've been led to believe, to us MMers. If I come into contact with anyone with the pox 😉 or anyone who's been in close contact with someone with it I have to get along to the hospital straight away. So I take my anti-virals as I'm told 😉 I need them as long as I'm on chemo.
As to antibiotics when I came back from Greece with my infections – all duty free – I was put on 3 different ones though one was changed almost straight away due to 2 not being compatible. Generally I take what I'm told to take unless I've had problems in the past which I highlight at the time of the prescribing.
Just my Dex fuelled observations.
Andy
Hi Rob.
I had the pump when I was on PAD it wasn't too bad once i got used to it though I too missed out on the red pee. I only had two cycles of Pad or it may of been three but it didn't happen for me 🙁 side effects wise I got a little numbing in the end of my fingers like you get when you've had your hands in water too long.
Hope everything works out well for you "live long and prosper"
All the best.
Andy
