Hi Siobhan,
Can you tell us about the funeral arrangements for your Mum? I would like to know in order to have some quiet time during the service… To think about our friend and to share a smile and fond memories.
Regards
Dai.
Hi Avis,
Great news all round… your remission firstly and then the adoption of Myeloma UK as your company's chosen charity.8-)
Are you back at work? If so I hope you are taking things slowly and easily… don't give MM a chance to bite at you because you are overdoing it. I don't think for a second that doing too much will reactivate the disease but any peripheral bone damage can cause fractures etc. So nice and easy please.:-D
Anyway, welcome to the forum and I hope you stay around for a while so we get to know you.:-)
Regards
Dai.
Hi Stephen,
Like you I only achieved enough stem cells for a single procedure (2.1 million) after 5 days on the harvester, including two visits back to the hospital for 2 seperate midnight doses of Plerixafor. They struggled to get there but we finally made it (although nobody thought to let me know until the following Monday). The struggle to get the magic number was shown by the return procedure where the 2.1million cells were given back in 14 separate.bags (an existing world record or so I am informed) Nottingham's previous record was 8 bags which they had thought unique… a dubious record and I wonder if that had an effect (given the preservatives etcetera) because my 3 to 5 year prognosis turned out to last 10 months).
Velcade got me down to 0 and full remission but only lasted 6 weeks out of treatment… But I am presently on cycle 5 of Revlimid and Dexamethasone… So it seems that I respond well while on active treatment and poorly out of it… So Rev and Dex… A continuing therapy, may be the kind of treatment that works for me.
I wish you well with all your treatments and hope they bring you long remissions. David, (Perkymite) struggled with harvest but has responded well to his SCT and is doing well… So the actual harvest procedure is not necessarily an indicator of resulting remission etc.
Regards:-)
Dai.
Hi All,
As I understand it Rev & Dex are good at keeping things stable for a goodly period (current median 30 months and still rising) but it is a therapy NOT a chemotherapy… so Zero readings are not to be expected if your starting position was out of the box (i.e. above 'normal' – whatever that is).
So R&D might cap a reading that is above normal (for sake of argument lets say 20pp's) an keep them there or thereabouts… and do so for quite a long time.
I started Cycle 5 of R&D yesterday and I'm feeling Okay.. not brilliant but manageable… and if it stays like this for another 24 months I will gladly take it.:-)
Its a matter of perspective. At my stage I will take 30 months and be very, very grateful… even with a 'manageable' quality of life. My hope lies in something else… bolted onto R&D or freestanding… coming online within or at the end of R&D's working life.
5 year SCT's or long term remission from other sources are now beyond me and I know and accept that. 30 months IS long term for me… followed by whatever there is to keep me going for a year or so after… lovely, as David Jason might say, jubbly.:-D
Guarantee it and Id be rubbing my hands in glee.8-) 😉
Dai.
Hi Rachael,
Welcome to the forum. First things first, what is your Mum's name and where is she being treated? (Not necessary information, I'm just being nosey).;-)
I have had several incarcerations with infections and the like over the last three years (my wife tells me it is 5 times, so there you are) so they do happen and the medics like to be 'rather safe than sorry'… and quite right too. The source of the infection is rarely traced, despite cultures being taken etc., – they usually give you a few doses of a magic anti-biotic which usually gets the infection under control within 24/48 hours… once your temperature is down and stays down for 24 hours they will let her home with a bucket full of pills.
I wish your Mum well with her frontline treatment and I look forward to getting to know her through you over time.:-)
Regards
Dai.
Hi Siobhan,
After three days of gum infection I went to bed feeling sorry for myself, in pain and uncomfortable. Then I read the news about your Mum and my pain changed.
Your Mum was a truly inspirational person… Not in any extraordinary way but in the everyday, ordinary way. She had the ability to pick you up and dust you down and set you on your way with a smile and a sense of perspective… Her no-nonsense sense of humour and her ability to humanise all occasions and situations made her just the person you needed to answer your query, soothe your discomfort and place your feet firmly on the ground.
I cried and cried last night… we never met, we didn't need to… She made me feel as if I had gained a sister and a friend and someone to stand back to back with against this bloody stupid disease.
Please take comfort in knowing just how much your Mum touched other people through her just being herself…. That was something special, something that most of us will never get near.
Much love to you and all of yours.
Dai.
God bless and keep you close girl. You were my friend when I needed… you have walked beside so many of us, cheering us up when you were as down as any of us… I'm hurting so I'll leave it at that for now.
Dai.
Hi Jane,
Welcome to the forum… if not to the reason for its existence.
CDT is not much fun but I always have a good word for it because it worked very well for me. Like any treatment that includes active chemotherapy your body goes through the mill but if the end result is good then it has been worth it.
I wish you well in all your treatments, processes and procedures and look forward to sharing advices, experiences and small humanities with you in the future.
Regards:-)
Dai.
Hi Jennah,
What treatment is your Dad receiving? If it is Velcade then once you eventually get seen to it will be a quick injection into your Dad's tum and then its over… of course, getting ready can mean a lot of waiting about. If it's something else then it can mean a lot of sitting around… where your Dad will inevitably fall asleep at some point… so make sure you have access to a magazine or a good book.8-)
Where is your Dad being treated btw?
Regards
Dai.
Hi Onlyme,
My consultant broke the news gently by saying that there was an upwards move but it needed confirming over 3 months… just to make sure it was not a blip, which do sometimes happen… but the 2nd month's increase put paid to hopes of blips and glitches… we knew. As a matter of fact I knew after the 1st rise with out being told because of the associated bone pain and that was the worst time. The prognosis, due to such a marvellous response to my CDT frontline treatment, bringing my light chains down from 3,500 to zilch in 3 cycles, was 3 to 5 years… well I got 10 months… and it felt as if the bottom had dropped out of my world.
But that was 18 months ago and since then I have endured Velcade and, due to only harvesting enough Stem Cells for one transplant, have now moved onto Rev & Dex… of which I am about to move onto Cycle 5 next Monday… so far so good.8-)
Stay positive… there are some excellent looking mid-treatments, some on their own, some in conjunction with existing treatments such as Rev and Velcade, about to be licensed in the next year or so which look like being as good as any 2nd SC Transplants in terms of remission, without the palaver associated with such procedures.
I wish you and your Mum well… especially in staying positive and not dwelling too long on your current disappointment.:-)
Dai.
Hi Gill,
Bridget had an infection or two which meant hospital time and now she has a case of shingles which I believe have affected her eyes. She has made one or two quick posts on here recently but is more active on Facebook. There are several forum members active on FB for social chat etc… led by Tom & Min… you could always make friends and try that way.:-)
Look for Bridget Rochfort and request friend. I go under Dai Crowther… you will quickly find the rest.8-)
And how are you two anyway?
Dai.
Hi Keith,
I have been on Enoxaparin since last July… 6 months at 140mg per day and then 40mg maintenance since (I developed a DVT while on Velcade… (unusual I'm told but there you are)).;-)
I inject myself… it is very easy and usually painless (unless you catch a bruise and then it stings a little but nothing much even then. The bigger doses were worse because it can sting for a minute or so post injection as the liquid disperses… the secret is not to touch the area for a couple of minutes… if you instinctively rub the area you will cause both local pain and a gurt big bruise.:-(
The injections come in strips of two. You break one off, peel back the protective film, take out the injection and take off the needle guard. The needle is incredibly thin and very short. You pinch an area of skin below or to the side of the belly button and pop the needle in straight down… no angles. You then gently and slowly depress the plunger until all the liquid is dispersed… wait a few seconds and depress again. A guard will close down over the needle and you lift it away. I put a samall tissue over the area and cover up… remember, no rubbing.;-)
Usually a nurse will either show you how to do it for the first time or instruct you as you do it yourself. Do it yourself is best because then both of you will know that you are going to be okay with the procedure. The nurse will talk you through it either way.:-)
It really is painless and confidence is the key. Of course there will bound to be a post-brusie or two at the beginning but you will soon get used to your own routine.8-)
Best wishes
Dai.
Well I got so excited about feeling sleepy that I thought … toilet or not toilet… but I erred and went and stayed awake until 6am. So, two and a half hours sleep and then meds and breakfast followed by another hour's sleep.8-)
But for all that we had a productive day and a lazy late afternoon without a sign of a doze… now I've come to bed to spare Janet another football match… I'm listening to the Archers followed by Germany Vs Holland… and then whatever it takes to get a good night's sleep.8-)
The recent sleep problem's have coincided with me starting on Amitryptiline… for my PN + its soporific qualities… great for a week or two and then I've got used to it and the soporific value seems to have disappeared. I'm tempted to pop a sleeping tablet tonight instead of the Amytriptiline (I'm only on 10mg so it shouldn't cause any problems)… that should work… unless any of you have any other suggestions. Can I take both? 😐 🙂
I'm determined not to let this become a real problem… a couple of good nights and its as if there was never any break in decent sleep patterns.8-)
Hi de hi.
Dai.
Hi Keith,
Well I am four months ahead of you on Rev @ Dex. My side effects are visible with the usual. DexEffects tm. The RevEffects tm. are less visible but they are the ones that determine good weeks and less good weeks. Fatigue seems to be the worst culprit but I'll take that and so far I can honestly say that if it carries on like this … then carry on.
The monthly check ups… the wait and see blood tests that determine the next step… to carry on or… well.
But we know all about those days… it's just at this stage it's a regular occurrence.
Enjoy your holiday Keith and all the very best with Rev and Dex… If it takes us into Carfilzomib territory we can both celebrate the next step.:-)
Dai.
Hi Jean,
The standard agenda for treatments in the UK is laid down by NICE (The National Institute For Clinical Excellence) which actbotany as a guidance and funding body. Their 'guidance' Is actually quite a strict funding regime… You can negotiate treatments away from their heddle but not from their funding, which carries no guarantees away from their 'guidelines'.
The standard funding guidelines/treatments are:
Frontline: CDT/RCD etc.
SCT: Stem Cell Transplant (Including preparations, pre-harvest, harvest and pre-SCT)
1st Relapse: Velcade
2nd SCT (or accrued remission from Velcade treatment for those who do not qualify for 2nd SCT)'.
Please note that those who do not qualify for the SCT route due to age will jump from frontline to Velcade.
2nd Relapse: Revlimid & Dexamethasone
3rd Relapse: Clinical Trials, previous treatments and or the kitchen sink
End of life procedures.
Of course there are trials and new treatments becoming available all of the time… In that regard it is an exciting time for myeloma patients… Especially those new to the disease.
I hope this is of help.
Dai.
