Hi Alastair,
I cannot speak for other hospitals and centres as I have limited experience… but what an experience, in my case Nottingham.
The City Hospital complex has a purpose built Haematology Unit with an excellent Day Case Centre and two floors of specialist wards above the shop. It is part of a teaching hospital with direct links to the Queen's Medical Centre a couple of miles away along the bypass and all the departments seem to link, learn and share both experiences and facilities… which are state of the art and second to none.
Our consultants are leaders in research and development and there are always many trials in existence… which certainly helps if your individual case is backed into a corner.
There may well be others just as good.. I certainly hope so. 🙂
Dai.
Hi Bridget, what a lovely morning (the night was good too, seeing as I have been awake for most of it) 😛 .
I think you may well be right about the 'week off' but that is really, really okay… because, as you quite rightly say, if I am expecting it then it will be tolerable, with coping mechanisms cut to suit. 🙂
I expect I'll get into the rhythm, taking two steps forward, followed by one step back, with Tom in the background somewhere shouting (in Ronnie Corbett's – Timothy – screen mother's voice) 'Onwards… Upwards….'. 😀
Dai.
Tom, Jo and Debs,
Thank you for your support. It has been a strange day but I have reached the end of it without any further PN attacks, although my torso, ribs and sternum feel that Popeye has been going rumpeytumpetyrump ten to the dozen. :-S
I am following advice and increasing the Gabapentin and will monitor. I can only assume that the Velcade is in my body and hunting down the myeloma cells, where it caps them (I've seen the graphic) and leaves them to grow and explode. Apart from that I feel quite relaxed and very hungry… all of the time… and my taste buds have come back into their full glory for the first time in 18months… go, as our American friends might say, figure.:-/
Thanks again.:-)
Dai.
Thank you Angelina.
In which case I have a nice surprise for you. 😎
I have a lot of creative irons in the fire at the moment… from getting my first novel into the hands of an agent, getting my second novel started – big gesture, I am going to write the first paragraph on Thursday. 😀
I also have a songwriting project on the go – a concept album (I have always wanted to do one) and Dex gave me the subject matter and genre last week. :-/
It is going to be a country album (from ballad to country rock and all things in between) of eight (8) songs – a cycle. It is going to trace the love, life and experiences of a young couple over a twenty (20) year period. The protagonists are Danny and Angelina… and the title of the project is: Angelina. 😎
Here's the lyric to song 6 of the cycle (the ghost song) as a taster. 🙂
Dai.
[b]Angelina[/b]
[b]1.[/b]
I?m booted and I?m suited and I guess I?m ready to roll
I should be out there striding but I?m keeping to a stroll
Cos? the mood that pressed and dressed me, has not reached my soul
Angelina, Angelina
[b]2.[/b]
She?s taking me and making me, walk down to the bar
A lonely mile of dirt track, it seems a mile too far
She wouldn?t let me take the truck, ?cos I refused the car
Angelina, Oh Angelina
[b]Chorus:[/b]
Angelina?s walking with me, Angelina?s by my side
Angelina?s just a ghost now but she used to be my bride
[b]3.[/b]
She?s teasing me and pleasing me, she tells me I look cool
Even though the both of us know I feel such a fool
But she needs me ?out there?… I feel I?m back at school
Angelina, Angelina
[b]4.[/b]
I?m thirty-four, just thirty-four, a widower and dad
And the sixteen years with Angie were the best I ever had
I just don?t want to be here but Angie says: ?too bad?
Angelina, Oh Angelina
[b]Chorus:[/b]
Angelina?s walking with me, Angelina?s by my side
Angelina?s just a ghost now but she used to be my bride
[b]Bridge:[/b]
Angelina came to me in a wondrous, life-like dream
Her beauty was so hard and real I felt that I should scream
She said she?d found someone for me, the peaches to her cream
Angelina, Angelina
But Angelina?s looking hard and she?s made up her mind
There?s a dark haired girl somewhere, a girl she wants to find
Then a thumb runs up my spine
[b]5.[/b]
So here we are inside the bar, I guess its pretty full
A real good mix of Friday-nighters dressed and on the pull
But there?s one dark haired girl my age pressed in cotton wool
Angelina, Oh Angelina
[b]6.[/b]
I?m booted and I?m suited and I?m walking Sadie home
Her fingers tangle in my hair, followed by her comb
The way she looks inside me tells me that we will never roam
Angelina, Angelina?
[b]Chorus:[/b]
Angelina?s walking with me, Angelina?s by my side
Angelina?s just a ghost now but she used to be my bride
Angelina?s just a ghost now but she used to be my bride
Angelina?s just a ghost now but she used to be my bride
Hi Min and Angelina,
Thanks for your concern and support… I'll be fine. I rang my support nurse and she has told me to increase my Gabapentin to double dose in the evenings and perhaps even a Amitryptiline for dessert if I feel like it.
I was feeling so good and then, out of left field, I was back in a place which I was not awfully fond of first time around.:-S The PN was a cracker. 😛
Now, excuse me a moment while I flex my biceps…..
Yes, Janet confirmed that they are my biceps…. so here's the macho bit. 😉
As long as it is mainly a matter of pain control and allowing Velcade free range with my body as it goes about its business… then I can cope. I am not going to stop it (and I get the feeling that my team don't want it to stop) or ask for it to be reduced just yet.
Bit of a shock tho' – :-0 .
Dai.
Hi Ruth,
Being so early in the clinical response this is definitely a case for the medics to answer. A good starting point would be a call to Ellen and the team here at Myeloma UK and be guided from there.
The strength of this sufferer/carer community that has built up around this discussion group lies in the sharing of experiences, medical and domestic while demystifying some of the processes and procedures and generally supporting each other through the thick and thin of living and dealing with myeloma.
We leave the medicine to the medics… for everything else we are a masterclass.:-)
Dai.
Hi Nicki,
It was good to see you again at the clinic and to finally get to meet Sam. He looked extraordinarily well and seemed to be bouncing with energy and life – long may it last!
Sam has responded well to his treatment and his SCT and if he gets a good length of top-end remission then who knows what will becoming available down the road.
All these new developments we hear about are exciting… but they are only the forerunners of those that will derive from or be inspired from those in turn. By the time Sam needs to address his next line of treatment I imagine that there will be a virtual arsenal of choices and chances. 😎
Take every one of them. 😎
It did our hearts good to see Sam so matter of fact and ready to get out and on with the day. 😀
Hope to see you again soon.
Dai & Janet xxx.
It is a powerful piece of writing, made so for me because of its immediacy and connection to the here of here and the now of now and summed up in:'"Someday" and "one of these days" are losing their grip on my vocabulary. If it's worth seeing or hearing or doing, I want to see and hear and do it now.'
As do I… and I am quite happy to find such wonders in the minutiae of everyday.
I had to smile because I keep finding little treasures and pulling them out for use and/or display and set off with:'As William Morris said, – surround yourself with those things that are either beautiful or useful -' as I start making space.
The other day I was digging out a set of bowls from a cupboard and I turned to see Janet, cutting out 70 pig shaped biscuits before decorating them all as party decoration/treats for Alfie's friends.
Beautiful and useful and here and now and always.
And I catch her, in quiet moments, with her eyes upon me, quietly drinking me in, assaying her thoughts… and I leave her be.
I am her here and now, she is my beautiful. In the days to come, through their desire to please me, touch me, give or take from me, my children and family will delve with loving eyes, minds and hearts and hope to get close to an understanding of what they are seeking.
Not Janet. She knows the secret.
When I am gone, when memory takes over, from the rawest of the first days to the mellowest of the last, she will simply say to herself, with utter conviction: I was loved.
Dai.
Hi Wendy,
I've had tinnitus for many years, a throwback to the nerve deafness I picked up from 14 years as a miner. I can get it quite bad, usually when I am very tired or run down although, for the most part, I can block it out and send it into the background where it becomes an almost non-existent irritant.
Saying that I have noticed it coming stronger when I am on treatment – during my CDT, SCT and now with Velcade, accompanied with your crackling and popping for good measure… white noise with occasional drum rolls and high-hat cymbal crashes.:-/
Its not pleasant and it is not funny… but like everything else that isn't actually physical pain, you do eventually find coping mechanisms to push it back, if not exactly completely block it out.
I hope this state of blissful ignorance starts for you soon. 🙂
Dai.
Gaye, you are an Angel. 😀 🙂 😀
You have been an inspiration, confidante, caregiver and friend to me and to so many on this board. I hate the idea of you having to endure pain 🙁 – it was the first thing said to me after my eventual prognosis back in June '09 – 'at least in this day and age, from this point forward, you will not have to worry about the sort of pain that you have had to endure up to now… and that's a guarantee.' And they have been right. 😎
Someone can sort this out for you, I just know it – and if it takes the surgery then please take it my love. 🙂
Dai. xxx
Hi Eve,
Music complete but my vocals are very tired – I'm feeling much better after a really good night's sleep (7 hours straight , unexpected but so grateful). My sisters coming over for an hour this afternoon and Janet's on 'Big Birthday Party Duty' for Alfie (5) so I don't expect her back until 7ish – so 5-6.30 set aside for laying down a vocal track. 🙂
Too much information I'm sure… but I resisted my movicol movements. 😉
:-0 :-0 and I mean :-0 …. and all that time I was blaming the medics for not turning up the gas.
You are a bad man.;-)
dai.
Gosh, you are all coming out of the woodwork now. 🙂 Liskeard is a lovely area… mind you the whole of the southwest is for the most part idyllic. I lived in south Somerset for several years and loved every single minute of south Somersetshire life.
I lived in a small village called Norton-sub-Hambdon, on a lane in the lee of Ham Hill, which produces that wonderful honey coloured stone. Although Wales is home and Fishguard in particular is my private haven and heaven I would still place Norton as the best place I have ever lived. 😎
Talking of support groups, I should really make an effort. :-/
Dai.
Excellent news regarding Revlimid Jen, let's hope it continues down to cr and a plateau that will last for years. As I have noted here before, I met a woman at the Nottingham INFOday who has been on Revlimid for 5 coming on 6 years, it simply works for her with a minimum of side-effects.
I must say that after 3 years of Movicol and Micralax as my best friends I would gladly swap for a mild case of concurrent dissentry. 😛
Can I ask how long you got after Velcade? My consultant is swinging between 6/12 months but I have read reports that where successful with early cycles (4/6) that 14/18 months have often been achieved. Of course I realise that we are all different but its good to hear/see experiences that open the range.
Yes, the 'British Press' remark wasn't lost on me… and here is the beauty of the internet, the people's press (a la twitter and injunctions et al) – its just how to raise the questions with our medics and to get them addressing it with perhaps one centre willing to make it break.
Here is hoping.
Dai.
From 'Pat's Place' a blog from an American MM'er.
Pat?s Place: For Me, ?Watchful Waiting? Becomes ?Hopeful Waiting?
by Pat Killingsworth
I have written about the challenges and frustrations of ?watchful waiting? here in the past.
I believe this is one of the most challenging aspects of living with multiple myeloma?sometimes all we can do is watch and wait for our myeloma to return.
But something exciting happened to me today, which has changed my whole attitude about this. I would like to share the details with you now.
During a follow-up appointment with my myeloma specialist, Dr. Melissa Alsina from Moffitt Cancer Center in Tampa, Florida, Dr. Alsina became concerned about what might be my early stages of Velcade (bortezomib)-induced peripheral neuropathy (PN).
My PN causes tingling in my hands and feet?like they are asleep?sometimes it?s worse than other times. Fortunately, my PN is not painful, although it is for many others. It?s pain and worsening of other symptoms that Dr. Alsina wants to avoid.
Normally when PN begins, oncologists simply cut back the number of Velcade treatments from two per week to one.
However, in my case, Dr. Alsina was hesitant to do that, since my monoclonal protein numbers?or M-spike?had not been dropping as quickly as she anticipated. Since I am scheduled to undergo a stem cell transplant at Moffitt in June, it was hoped the induction therapy combination of Revlimid (lenalidomide), Velcade, and dexamethasone (Decadron), which I had never tried before, would drop my numbers significantly in a matter of weeks.
So we faced a dilemma: Reduce my weekly treatment from two doses to one in hope my PN wouldn?t progress?or risk a painful increase in my PN by remaining aggressive and sticking with the double weekly dose.
Dr. Alsina?s solution was to recommend I switch to a brand new way of administering Velcade, subcutaneously (or subQ), instead of by IV push.
Dr. Alsina reaffirmed the results of studies I had read, which showed that subQ Velcade was less likely to cause serious PN than Velcade administered by IV.
?I didn?t even know subQ Velcade was available yet,? I remarked, surprised.
She replied, ?We have been using it here for several weeks.?
Let me explain. The formula of the Velcade itself is the same, but it is reconstituted differently for subcutaneous injection vs. intravenous.
Millennium Pharmaceuticals?the makers of Velcade?filed for approval of this new method of administration for Velcade with the Food and Drug Administration (FDA) in late March. However, doctors are already using the product ?off label,? meaning before the FDA has approved this administration method.
I suspected subQ Velcade wouldn?t be available at my smaller, local clinic, the Florida Cancer Institute. This was confirmed when I met with my medical oncologist, Dr. Malhotra, there on Tuesday.
?I believe we can get it.? Dr. Malhotra said. ?But I have never used it before?it is too new. Dr. Alsina is a specialist. She is more cutting edge than we can be here. If she says it is a good idea, I will review the literature and speak with her about it.?
Sure enough, when I arrived for the first of my two weekly treatments the next day, Dr. Malhotra had issued the order and I received the first subQ Velcade shot given by Florida Cancer Institute.
Can you say guinea pig?
So what? Why is this such a big deal to me?
Sure, it means I will need to undergo fewer IVs, and that should save some time and discomfort. But that?s not it. There?s more.
Two years ago, I attended a briefing on experimental drugs Millennium had in the pipeline. SubQ Velcade was one of the listed ?drugs of the future.?
But for me, the future is now! Since I have never been part of a clinical trial, this is the first time I have experienced an experimental multiple myeloma drug becoming a reality. Here I am?a short two years later?using Velcade in a new and safer way.
I never dreamed something like this could happen so quickly! To use a drug that only a short two years ago was in clinical trials leaves me feeling uplifted and hopeful.
Hopeful. Maybe we should change the phrase from ?watchful waiting? to ?hopeful waiting!? Velcade subQ is proof that new, experimental drugs are on the way?hopefully in time to help you and me live longer and better.
[b]Feel good and keep smiling! Pat[/b]
The fact that our consultant's are hanging back and waiting on this is becoming ridiculous. As Pat rightly says:
[b]'For me, the future is now!' [/b]
As it is for all of us. Can Myeloma UK push this forward?
Dai.
