Hi Mary,
I have had one pulmonary embolism (following extensive radiotherapy before diagnosis) and two DVT's (One in each leg a year apart), I was on warfarin for ten months which I came off pre-SCT and was never put back on it:-) .
Following my first DVT I was put on Enoxaparin (Clexane) 150ml, which I stayed on for six months before the dose was dropped to 40ml as a maintenance dose. I was back up to the 150ml following the second DVT and I have been on it ever since/// which I work out as 760 continuos injections from July 2011. (Sorry Andy… you will have to wait for the local record):-D
Prevention is always better than cure and I will be asking my consultant about Slim's RIVAROXABAN next Monday.8-)
Best wishes
Dai,
Hi Carol,
Plenty of good news and indicators for your progression to your SCT. If your medics have set 6 Cycles of CDT as your target then they will stick to it… for your sake.
I also had CDT and my KLC's dropped from 3500 to O after only 3 Cycles – they were down to 10 (ish) after only 2 Cycles. They then gave me one more Cycle to ram home the advantage before stopping my treatment in order to get the SCT preparation and the SCT itself done before Xmas. I din't get it done due to an infected Hickman Line… but that's another story.;-)
My medics said that they like to get the KLC's down to zero and keep them there for 3 Cycles before stopping the frontline treatment… which I more or less did. You don;t say how many Cycles you have had… but you are almost at zero and you may well make it at the next completed cycle.:-)
If you level at 0 and then get consolidation with the next cycle they might stop treatment… but if they insist on 6 Cycles I would follow their advice… If you want to go for a SCT that is. If you choose not to go for a SCT then the 6 Cycles of CDT will give you a greater advantage.8-)
Regards
Dai.
Hi Andy and Eva,
I made the call at 8pm last night (Monday) that I will ring the QMC Maxifacial unit to cancel my extraction appointment planned for 3pm (in at 12:30pm for pre-op bloods and antibiotics. I sealed that decision by having my Clexane at 8:05 (I was told to stop the Clexane the night before and for 2 nights after).:-|
The pain in my shoulder is bad enough, although it has eased slightly but I'm putting that down to being more careful. It had spread to the ribs under my arm and while not quite as bad as my shoulder it still catches when I take a deep breath. As I type this I have a cushion under my armpit which helps a little.:-D
My temperature hovered around 37.5 all evening before climbing to 37.9 at 11.pm/ I drank water and squash for Wales for an hour and put the fan on for an hour or so… it was 37.8at midnight and then I took a couple of parrots eat em all. I know that is naughty and that I should ring in to the bleep nurse but I know what would be said on a Bank Holiday… so it can wait until the morning (unless my temp continues to rise) when I can speak to one or the other of my lead nurses.8-)
Sleepless in Aslockton.8-)
Dai.
Hi Vanessa,
I don't always answer every thread because quite often somebody has already covered what I had to say. It has happened here, neatly and concisely. For my answer read Dick B's reply… he has covered what I would have said apart from the fact that my three children are all 30 or above… but with five very loving grandchildren with curious minds and observant eyes and ears;-) .
I wish you both all the best and I will follow your journeys for as long as I can.:-)
Dai.
Hi Scott.
It warms my heart to see you doing so well, especially from a 2nd SCT viewpoint. It puts the days of wine and Bendamustine into perspective and I hope you can fly solo, without any maintenance drugs to keep you afloat.8-)
Keep in touch and take things as easy as you can.:-)
Dai.
PS. Seeing as Thomas has 'been out nearly a monty now and feel pretty good' I can only hope that with a couple of fried cherries and a Satsuma Sunday or two under your belt you will fell the same.:-D 😉
Hi Tony,
We have a similar unit at the City Hospital in Nottingham… I've spent many a nice few Bank Holidays inside. The QMC also has one… I know this because I once spent 5 days there and it wasn't until the 4th day that I found out where I was… I had been submitted with a temp: of 39.6 and thought I was in the City as per usual. The two units look nothing like and I was completely compos mentis within 12 hours, so I have no excuse.8-)
Dai.
Hi Carol
These Bosnians… tut, tut… anyway, don't sit in draughts.;-)
Dai.
I tell everyone I meet that the greatest killer of MM is infection. We have to monitor the efficacy of treatments and the side-effects of medications but it is in the picking up of infections that most danger lurks. :-0
Perhaps this is why I get slightly paranoid about visitors with lurgy… be it ever so mild. I still often think of Bridget and I thought Paul would be with us for years Mavis… but such is the way of MM and infections, so I agree wholeheartedly with your statement:
[quote]Perhaps we need as much research in the fighting of optimistic infections as we do the actual dreaded MM.[/quote]
Especially those related to chest/lung infections.:-|
There are ghosts around my bed… I see them often from the corner of my eye… but I do not fear them, they have not come for me… just visiting, then they go on their way… gently, quietly, tranquilly… at peace.:-)
Dai.
I don't know about CDT/CDR but I have quite noticeable hand tremors and general twitches with my Velcade. Early on in the treatment I had techni-coloured daydreams, complete with sound effects… mainly inside my head… of explosions, bullets and sunbursts.:-D 😛
It was quite an unpleasant experience, both the physical and mental aspects but they have settled down now into a manageable set of side-effects, although I still have a few twitches now and then which prove to be, if not an embarrassment, at least an indicator that I am on a serious medication.:-|
Dai.
These reports from individual hospitals and research labs are very interesting but they don't seem to get much support from the major players such as the Pharmaceutical Companies and larger Myeloma councils etc. 🙁
I really do hope that one of these smaller research labs comes up trumps but for the moment I am keeping my eye on the major researches… and hope that they can improve their lab success to patients hands in much quicker time.8-)
Dai.
Hi All,
I switched from Revlimid to Bendamustine last January and I stayed on it for 4 Cycles (January through to the end of April) before switching to Velcade (for the 2nd time). :-/
I was taken off the Rev because my platelets had dropped from 130 to 80 over 4 Cycles while my Kappa Light Chains had risen from 125 to 450 in the same period. I am still convinced that my C: Difficule bug was not allowing the Revlimid to absorb properly and therefore I am still hopeful of getting back to it at some time. 😉
I came off the Bendamustine because it pushed my bloods right down… although to be fair, initially it was very good at bringing down my Kappa Light Chains. Because it pushed my bloods right down I missed a couple of infusions and had to have another couple of infusions at half strength. I was neutropenic for 3 of the 4 months I was on Bendamustine (with my Neuts at 0.4 or 0.5 at best. Apperently this is a common side-effect of Bendamustine, so if your bloods are low when you start on it you need to keep an eye on the results. 🙂
I had 6 very successful Cycles of Velcade over the Summer of 2011, including getting rid of a secondary tumour but I relapsed almost straight away once I had finished my course. This, for the 2nd time of asking, I am due to have 8 Cycles… the first 2 as per normal (2 weekly infusions followed by a rest week) and then 6×1 infusions followed by a rest week… giving me a total of 6×2 extra weeks. The objective now being, not to achieve remissions, but to keep me alive for as long as possible. 😎
Best of good health to all.:-D
Dai.
Hi All,
I switched from Revlimid to Bendamustine last January and I stayed on it for 4 Cycles (January through to the end of April) before switching to Velcade (for the 2nd time). :-/
I was taken off the Rev because my platelets had dropped from 130 to 80 over 4 Cycles while my Kappa Light Chains had risen from 125 to 450 in the same period. I am still convinced that my C: Difficule bug was not allowing the Revlimid to absorb properly and therefore I am still hopeful of getting back to it at some time. 😉
I came off the Bendamustine because it pushed my bloods right down… although to be fair, initially it was very good at bringing down my Kappa Light Chains. Because it pushed my bloods right down I missed a couple of infusions and had to have another couple of infusions at half strength. I was neutropenic for 3 of the 4 months I was on Bendamustine (with my Neuts at 0.4 or 0.5 at best. Apperently this is a common side-effect of Bendamustine, so if your bloods are low when you start on it you need to keep an eye on the results. 🙂
I had 6 very successful Cycles of Velcade over the Summer of 2011, including getting rid of a secondary tumour but I relapsed almost straight away once I had finished my course. This, for the 2nd time of asking, I am due to have 8 Cycles… the first 2 as per normal (2 weekly infusions followed by a rest week) and then 6×1 infusions followed by a rest week… giving me a total of 6×2 extra weeks. The objective now being, not to achieve remissions, but to keep me alive for as long as possible. 😎
Best of good health to all.:-D
Dai.
Hi Max,
While we can share the sum of our experiences regarding treatments, procedures, processes and the personal effects of all of these on patients, carers and families etc; it is difficult to offer subjective advice on purely medical matters.:-|
Click on the header: [b]'Myeloma Infoline'[/b] under [b]'Patient Services'[/b] at the bottom of this page.
Phone the number given and you will be able to speak to one of the specialist Myeloma Nurses. They are wonderful listeners and will be able to offer the proper advice given your Mum's condition.:-)
[quote]Call free on 0800 980 3332 from the UK or 1800 937 773 from Ireland. Calls from outside the UK or Ireland will be charged at your normal rate please dial +44 (0)131 557 9988.
Our Myeloma Information Specialists are available Monday – Friday, 9am – 5pm (closed weekends and most public holidays).
[/quote]
Then come back to us after you have followed that advice and tell us the what, who, where, when of your Mum's next steps. Once we recognise her path there is bound to be someone who will be able to offer advice and proffer their experiences.8-)
I wish you, your sister and especially your Mum all the very best of fortune in getting Mum sound and sorted.:-)
Regards
Dai.
Good news indeed Maureen.
I am sure that the interim time will surely fly… you busy with all things homecoming and Ian weaning himself from the institutionalisation of hospital care. It will be a strange last few weeks or so but the day will come and pass by and then both of you will start finding your 'feet'… and home will establish itself for both of you.8-)
Good luck and I wish you every happiness in the settling in.:-)
Dai.
Hi Wendy,
Months off treatment, KLC's 6000, about to start treatment AND still up for a triathlon (part or no)… it sounds to me like you are part MM patient/part Iron Lady.
Velcade was put in its current place in the NICE approved/funded plan to prepare people for their 2nd SCT (for those that qualified/a stand alone treatment for those that didn't). It doesn't offer much of a remission period but it seems first-class at getting pp's/light chains right down, often into complete remission – and is a great preparation for a 2nd SCT. Its best work is done in the first 2/3 Cycles and then keeps it there.
I had 6 Cycles in 2011 but unfortunately I was one of the stand-alone patients and although I achieved complete remission after only 3 Cycles (plus the deletion of a secondary tumour) and maintained that status through to Cycle 6 I relapsed after only 8 weeks and moved onto Revlimid.
Two years down the road, out of planned treatments but very much alive we decided (jointly) to try Velcade again… due to its previous efficacy and bearing in mind the objective of keeping me alive as its prime objective. We had the Ist 2 Cycles as per norm… (2 infusions for 2 weeks followed by a rest week) and the switched to 1 infusion for 4 weeks, followed by a rest week… making each Cycle stretch from 3 to 5 weeks… giving me a total of 12 extra weeks over 8 Cycles.8-)
As Thomas says:
[quote]Wendy good luck, my specialist keeps saying velcade is a very powerful treatment so don't be too downhearted, you can save Carfilzomib for the future [/quote]
And I believe that he is right. Somewhere, hopefully way down the road you will have Carfilzomib (Kyprolis), Pomalidomide (Pomalyst) and who knows what else waiting for you.:-D 😎
Good luck and the best of fortune in the future.:-)
Dai.
