Hi Julie,
I am so sorry to hear that your Mum has passed on. I am glad that you and your Dad were there with her at the end as she wanted. Remember your Mum as she was before MM but also remember how brave she was throughout her illness and how inspirational and helpful she was to others.
Dai.
I can see from others experiences that we are spoilt rotten at the City Hospital, Nottingham. We are fortunate to have a specialist Day-Case Unit, complete with a Harvesting room (that also has similar equipment that cleans/treats blood) next to an adjoining general consulting waiting room with a central phlebotomy unit and a consultation area beyond leading to a suite of consulting rooms and lead nurses rooms. Up above these areas are two Wards, Toghill on the first floor, a mix of single en-suite and double and quadruple rooms for general haematology patients and on the second floor there is Fletcher Ward – a 19 room ward, all en-suite with the major function being for transplants.
We all have the numbers for all sections, including the wards. If we have infections and/or high temperatures we ring the main numbers and ask for the bleep nurses – if it is in daytime working hours we are invariably told to come in for examination. Out of hours the decision will be made by the bleep nurse, normally in conjunction with the duty doctor (the third floor contains the doctors suites and offices) – I have only known one occasion when I was told to wait until morning – if you are considered genuinely ill they bring you in and make room.
All this under one roof as a dedicated Haematology Centre, with clinical trial status (and innovators)… we even have a service where 'Volunteers' collect prescriptions and go and collect medicines from the pharmacy. These volunteers also include unofficial counsellors… all either Myeloma or other Haematology condition patients.
I get angry when I hear some of the tales on this board… if we can have such a wonderful all-in, dedicated section then why can't every other similar sized hospital. To my mind there should be at least one in every county… I know that we get patients from east-Lincoln, north-Leicestershire and east-Derbyshire… but all of these patients have a maximum of forty miles to travel.
Post-code lotteries are one thing for general medical care (although still unacceptable in this day and age) but cancer patients, especially cancer patients with needs of specialist care and specialist knowledge, should not have to expect second-best and all the llfe-threatening and life-expectancy issues that accompany such shortfalls in facilities and expertise.
Dai.
Whoa lovely lady…
I wasn't referring to you in any way, shape or form poppet, I was stating my ignorance because I am increasingly aware that the more I get to know about MM and all its processes and procedures, the more I realise that I am just scratching around on the surface.
Looking back at my post it was a clumsy introduction and I realise that you could quite easily interpret it as a personal slight against you. 'I don't need reminding' was a personal statement of my own position, pure and simple – you and anything you have said to me didn't enter the equation.
So it is you who should be accepting my apology, which I offer wholeheartedly and unconditionally, I am so sorry that I have made you feel guilty or negative at a time when you need every ounce of positivity and love that you can get.
So here is my apology:
🙂 SORRY EVE 🙂
And here is my love:
😎 😀 XXX 😀 😎
Dai.
Thank you Mary,
Please pass on my best wishes to Theresa and your family.
I often think of Patrick, remembering when we were both having our SCT's and exchanging news and views via Theresa. The Cheltenham Festival was on at the time and I was aware that your Dad enjoyed the racing, so I studied the form via the internet and had a few small bets. I didn't win much but it took my mind off the SCT for a short while and I genuinely enjoyed the festival. I was so pleased when I heard he was back on his bike and devastated when the news broke of his quick relapse at the time of his trip home to Ireland.
I'm not saying that I feel guilty… but I do get a sometimes overwhelming sense of unfairness… that some of us got the chance to fight for our small freedoms while others were denied. It makes me both sad and extraordinarily grateful for my good fortune at the same time.
I would love to meet you all at some time – perhaps at a music session in or around Chesterfield? I know that there are musicians in the family, perhaps we could arrange a concert/fundraiser?
With my fondest regards.
Dai.
Thank you Sharon and I wish you all the best with your results… I hope you achieve the CR bracket and 0 across the board if possible.
A question – if you finish C8 tomorrow then why do you have to wait until mid-November? The longest I have had to wait is 2 weeks. Eve & Slim have also had these long gaps between treatment and results and it is beyond my understanding as to the reasons why. Have they given you any?
As to being glad to finish Velcade I am in total agreement… it took me down, making me feel physically and mentally exhausted… no nausea, no pain (excepting the PN which they tried to help by lowering my dosage a couple of times) but it was… gruelling… that's the word that fits my experience best.
Best wishes and congratulations on your freedom from the Cycles. 🙂
Dai
Hi Mari,
First of all you have to allow the hope that this is a 'glitch' in the readings… it has been shown that these do occur. Secondly your consultant will want to see 3 readings on an upward curve before declaring relapse… and even then only if the trend shows a significant rise (5 to 6 to 10 etc). I met someone at the Nottingham InfoDAY who had had a scare when his PP's went from 2 to 4 to 5 and then plateaued for over a year (and still there as of March this year) . He was 2 years into his SCT remission at the time and was trying to reassure me because I was in a similar situation with my light chains rising (unfortunately mine kept on rising and I was declared 'relapsed' in April… on Janet's Birthday).
If it is a relapse then you will have to come to terms with it as quickly as you can because, if my experience is anything to go by, they will have Steve on Velcade in a blink of an eye. I had 6 Cycles of Velcade and I won't pretend that it is pleasant,,, but then again it was not horrendous either… just relentless… but boy did it work for me and within 5 months of my official relapse I am now in remission once more. So don't feel too despondent if the news is bad,
I am here for any advice with Velcade… which has been given a new lease of life BTW – with the introduction of subcutaneous injections (SubQ) which takes away all the paraphernalia and unpleasantness of cannula's etc AND the side-effects are drastically reduced (according to the American experience).
I wish you and Steve the best of fortune
Dai.
Thank you David, Gill and Liz,
If positive thinking has anything to do with it I will live forever. 🙂
I really am going to try and enjoy every day of my remission… however long or short it may be. I have a book to write, a series of albums to record and some serious down-time to enjoy with Janet. As I have said else-thread, this period of time will be the last treatment/drug-free time of my life…. and I am determined to to let it slip by in fear of relapse… this is our time, mine and Janet's – and I am going to be self-centered and even selfish in how I spend this time. 😎
That does not mean I will be abandoning my cyber friends… you are all too precious for me to do that. If I do not post as often as I have been it will only be because I am out and about or away. 🙂
If I cannot cope with the 'bad' news that affects my friends because I am temporarily out of the loop and feeling relatively well then… in my books… I would be a poor friend indeed.
Dai.
Hi Eve,
I don't need reminding of how ignorant I am regarding the processes and procedures of MM, however much I read or research… at the end of the day I can only refer to my own experience and information that I have gleaned along the way.
What I don't understand… and personally find unacceptable… is the parameters and limitations that they seem to be working to with Slim. You have said:
[b]3. Now in Limbo, on 3 cycle of Velcade, told light chains are stable, do not know if Velcade is working and will not know until bone marrow is taken end of October.
4. So 12 to14 weeks will have passed, without knowing if Velcade is working… asked about PET scan, answer will not tell them what is going on in bones, had MRI scan, no change… but there should be change!!![/b]
Initially I also had to wait… until the consult pre-Cycle 3… when they gave me the first measured results (from 246 Kappa light chains to 13). My 'Freelight' test was taken (via my normal blood tests at the end of Cycle 2) – I am told they take 1/2 weeks to come back. Why did Slim not have this test? (As well as, not instead of his bone marrow).
In the same 14 week period I had 4 'Freelight' blood tests. My consultant swears by these tests as accurate measurements of Kappa light chains in Bence-Jones related light chain myeloma – the same myeloma category as Slim's.
I do understand that there seems to be some sort of aberration in the activity in Slim's bone marrow… but still… surey he should be having 'Freelight' tests as standard. I'd love to hear your medics reply as to why they are being denied him (or if they have been carried out (I wouldn't be surprised if they have) why have you and Slim not been given the results?
I'm frustrated for you… and this is one of those times where I wish Slim was being treated at the City Hospital in Nottingham.
I understand that you are reasonably mobile… and forgive me for putting my oar in… but it might be a consideration to find another area with a specialist Haematology unit .
I did… and it saved my life.
Dai.
Hi Terry,
I agree with Bridget, you have certainly been through the mill, several times by the sound of it.
My SCT failed after 10 months (I was told to expect 3 – 5 years) so I do understand how hard a relapse can hit you. I relapsed in February/March this year, confirmed in April (on my wife's birthday) with an accompanying Myeloma related tumour (pea to egg in 8 weeks) on my sternum in case I needed proof.
I started my first Cycle of Velcade in May and my tumour completely disappeared in the first 2 weeks of treatment. Velcade is given over a 3 week cycle – mine by infusions through a cannula in the back of my hand – with infusions on the Monday and Thursday x 2 and a rest week before a consult (to monitor and administer any changes in volume of Velcade) and the next Cycle. The good news for Velcade customers is the introduction of subcutaneous infusions… a simple injection in the tummy – just like your Clexane… which I have been taking for the last 3 months (continuing) for my DVT which developed during treatment.
I had 6 Cycles and responded very well. Like Debs I had some bad problems with Peripheral Neuropathy and my Velcade was reduced on the 3rd and then again on the 4th Cycles (from 2.47 to 2.1 and then to 1.47 until the end of treatment).
Talking of which… I was due to have the full 8 Cycles but I achieved CR (Complete Response) sometime in mid-July and at my pre-7th Cycle consult on Monday my consultant informed me that enough was enough and declared me in remission.
So no, Velcade is not the last resort, not by a long chalk. I hope to gain 6/12 months remission from Velcade but my consultant and I have already started discussion on the next course of treatment, Revlimid. She is quite bullish about Revlimid, saying that it is possible to stay on the treatment for years.
Unlike CDT and Velcade, where you take the courses and then hope for a good period of time off treatment, Revlimid is taken continuously (with 'rest' weeks) in tablet form. It works while it works, if that makes sense, and it can (and has – in many cases) work for years.
After that the next course of official treatment seems to be most likely Bendamustine and then there is Pomalomide and my consultant mentioned another new treatment (I missed that particular snippet due to the shock of being told by my consultant to get out and not to darken her door for 6 weeks but my wife Janet picked it up) about to be launched on the world of MM.
Chin up Terry, you have found us and believe me THAT is good medicine. 😎
Welcome.
Dai.
Rant away Debs… and good luck with the NICE/local health board issue.
Funnily enough I might have a similar problem… I rang the hospital today to enquire about my Clexane injections… whether I had to carry on with them long term or be referred to the warfarin clinic. After consulting with my consultant one of the lead nurses instructed me to definitely carry on with Clexane and said, in a hesitant voice, that 'Your GP should be able to prescribe them for you… but if you have any problems get back to us'. The way she said it made me wonder if my GP will have a problem with it. I know that the local health board has argued that certain medicines should be provided by the hospital boards… perhaps Clexane and the like are amongst those 'certain medicines'.
Dai.
Thanks Debs,
I am allowing myself a couple of days to adjust and then we are going to make some flexible plans. I need to be able to write each day – for a set period… a couple of hours or so. I have found that treatment and side-effects has severely restricted my creative pursuits because while you can get your body to persevere you really do have to be in the right frame of mind for writing and songwriting. No excuses now and Janet has made that clear. :-0
Dai.
Well done you!
You are an inspiration to us all… especially in your refusal to be defined or restricted by your condition.8-)
I am really looking forward to seeing any photographs… and especially any videos.
Brilliant! 😀
Dai.
Thank you friends.
My remission period has come at me six weeks early, I had no reason to suspect that I wouldn't complete all 8 cycles… but it seems that 6 will suffice.
I am happy but also a little scared… I feel a heavy responsibility to achieve so much in an unknown amount of time. I only produced the bare minimum of stem cells, so no 2nd SCT for me… so I am aware that this period… be it 6 months or more (I believe that my consultant was more or less indicating that anything above 6 months would be a bonus and that a year would be a wonderful achievement) will possibly be the last ever period of treatment/drug free living that I will ever know… so the pressure is on to both enjoy life and achieve certain goals.
Don't get me wrong, its a truly wonderful 'problem' to be faced with and I wouldn't swap it for the world… but I would be lying if I said that it is not also daunting in its way.
A new world starts tomorrow morning… and I want Janet to see it, feel it and be part of it… she deserves it as much, if not more, than me.
Thanks again.
Dai.
Hi Mike,
During my consultant's meeting yesterday I raised the question of a mini-allo as a possibility for the future… (wanting to know if my age – 57 – would stand against me) and she surprised me by saying that they are being phased out very quickly across the UK and most likely will not form part of the MM treatment planning at all within a year.
I don't know how that will affect stem cell donations in the short term but as for the long term?
I wish you luck in your endeavours,
Dai.
Hi David,
I am on 'Bonefos' – a Sodium Clodronate, of which I take 600mg (300mg twice a day).
I had 1x bag of Zometa at the beginning of my cancer journey, when they were treating me for secondary bone cancer, primary unknown. My mate, the ill-famed Welsh consultant, stopped me continuing with Zometa because he was convinced that I would end up with 'osteochronosis of the jaw'.
I take my general meds at 8am & 8pm, excepting the morning bonefos, which I take at 10am because I enjoy cereal with milk for my breakfast.
I have extensive bone damage but the medication has never come up for debate. I do believe however that Zometa is given to people with active bone problems… although I am quite willing to have that belief blown out of the water. 🙂
Dai.
