Hi Leigh and joe,
Joe, I think Leigh's advice is spot on. Its based on his experience but I am sure it won't be that far removed from your own.:-)
Leigh, I am so glad that you are managing to find some sort of 'normality' whatever that is… but its yours and it seems to be working so good for you.8-)
My father was treated for lung cancer at the same hospital that I am receiving my MM treatment. His 1982 – 87… mine 2008 – to present sand hopefully a while beyond. My Dad was 57 years and 10 months when he died. I turned 58 last Xmas Eve… it seems weird to find myself living to be older than my Dad… it seems wrong somehow… but I'll take it.8-)
For the first couple of years after his death I kept 'seeing' and 'hearing' my Dad many times. At football matches… crowded streets and shopping malls… his voice on TV and Radio. There were many occasions when my arm raised involuntarily… a call strangled in my throat as I realised what I was doing. It eased and then finally stopped… until I fell ill and I started seeing him on a few occasions but I controlled it and he went away… but I have no excuses these days… I see him clearly each time I look in the mirror.:-)
For what its worth this is a song I wrote when i first contracted MM… (funny that, I don't remember signing anything).;-)
http://soundclick.com/share.cfm?id=6291068
Click on the link… it should play automatically.
This is my story… yours will be yours… but you will both cope… both grow strong enough to support your Mums and other family members… you have your father's genes running through you and as you grow older his gestures and sayings will re-enact and trip from your tongues naturally and rightfully.8-)
Regards
Dai.
Hi Jean,
I had thrush or some relation a while back and I was given a 5 day course of tablets and the instructions to keep my fluids up.
As I have written elsewhere several times recently… I often get a rising temperature which, if my lungs are clear, I take to drink, several litres over a few hours… I force it down untilI get a strong steady stream. It has worked every time and every time I can look back and note that, for whatever reason but usually when I go out and about, my fluid intake either drops dramatically or my 3 litres are consumed very early… at those times I dribble and sting and I know its time to start flooding the system.;-)
I believe in fluids…. 3 litres seems a lot but I have upped mine to 4+ and every day I do I feel good.8-)
Dai.
Whatever works for you shouldl be your guide but be aware that there are certain foodstuffs and drinks that shoud be avoided during certain treatments… grapefruit and grapefruit juice during Velcade for instance if I recall correctly.
I remember asking my consultant about Tumeric and she sighed. She said that they are asked about certain foods and supplements as a common occurence…as if people are grasping at straws and trying to mix magic and medicine. Her advice was to eat and drink whatever you chosse while on remission or out of treatment but while on treatment stick to the plain and simple and any restrictions noted by your lead nurse.
I'm in two minds… we follow a high vegetable diet, with a seaweed (kelp) supplement which is also very, very tasty,especially with sweet potato and lamb. But as for the tumeric,wheatgrass and others that raise their heads occasionally… I'm not so sure. But that's just me Janet.:-)
What a beautiful name you have btw.8-)
Dai (& Janet):-D
Hi Keith,
We are taking the same amount… Me in a once a week glut and you spread out over twice weekly.
No, I haven't relapsed… Far from it at the moment with my blip, from 135 to 212, back down to 175 and then down to 125. There was no FreeLight ordered last month so no idea wher I was at the last consult but when I went into the clinic for my pre-consult bloods I asked if a FreeLight was ordered and the new female phlebotomist said 'No'. The senior phlebotomist turned around and said 'If Mr Crowther orders a FreeLight Test' then he gets one'. I said, 'Yes please' and he said 'Sorted' and one was taken. Nice to know.8-)
With Revlimid being a therapy, rather than a chemotherapy, I might never reach the magic figure of 13 to qualify as in 'Remission' but if I can get down to something like 50 and stabilise, then that will do me fine. I don' really start feeling the effects of MM until I hit 200+ so anything stabilised under a 100 will suffice.
I do hope that your PP's reach a good figure before they stabilise. Staying on Rev & Dex until Carfilzomib comes on board (Kyprolis will be the Trade Name) would be good for both of us because used in tandem with Rev & Dex it can knock MM right back and give Rev & Dex a new lease of life. the good news is that the 12 good men and true of the US FDA voted by 11 for – 1 abstention iin favour of licensing Kyprolis. Now the full FDA committee doesn't have to follow the findings of the advisory committee but it usually does. That means it could get it green light for full licensing on, I believe, the 27th of July next. If so, then it could reach Europe & the UK for review and licensing by next summer (2013) or just after.
I have been following Carfilzomib/Kyprolis very closely after just failing to get on its World Trial in February (it closed late February with me qualifying for everything except 0.5% urine in my MM – 2 weeks later I was there… 2 weeks too late).
My consultant is very bullish about its efficacy… And so am I… So am I… with knobs on.:-) 😀 😎
Dai.
Hi Keith,
I have taken my Dex once a week from the start… 2mgx20=40mg every Tuesday.
My bloods were monitored fortnightly for the first 2 Cycles (I was told 3 but they gave me a 4 week appointment at my 3rd consult).
I was interred with a lung infection during Cycle 3 and I was told that my upward rise in my light chains may well mean a relapse and they wanted my permission to put me forward for a Bedamustine trial… just in case, so I had to say yes. My lead nurse, who covered my interim bloods, said the upward rise was most likely 'blip' judged but the other blood results and ratios but it seemed the medics either disagreed or were not taking chances
My Kappa Light Chain readings went from 311 to 226 to 135 to 212 (to 175) to 125. The bracketed reading 'slipped the net' and wasn't picked up due to 'holidays'… that was the last actual reading when the medics visited my sick-bed (and sent me home with AB's various and food for deep thoughts).
So my light chains were actually dropping again, as per lead nurse prediction, and continued to drop but for some reason they didn't order a FreeLight Test at my next consult (3) so I won't know where I am now for another 3 weeks.;-) 😛
Not on trial… but it feels like it at times.;-)
Dai.
Hi Penny,
Nottingham City Hospital supplied my ice by way of those long fruit flavoured icicle pops… and they were tasty and efficacious… I'd make an enquiry if I was you and if the ice offered is by way os standard cubes I'd grab a hafl-dozen ice pops.:-D 😎
Dai.
Hi Keith,
My first two cycles were monitored on a fortnightly basis…. With general bloods and a Freelight test (Bence Jones). Cycle 3 was as normal and I was declared 'off probation' from Cycle 4 onwards. I am now on week 2 of Cycle 5 and I seem to be fashioning some sort of normality.
I take 25mg of Rev, daily for 3 weeks and then a rest and I take my Dex every Tuesday (which is wiped out as a 'stay in and sweat' day.:-) Each day after that improves until Monday… Which is an almost 'normal' day.
I hope Rev & Dex proves both efficacious and kind.8-)
Regards 🙂
Dai.
Hi Angie,
I am so glad that your Mum was able to request the start of palliative care… It means she was fully aware of her situation and despite her discomfort and fears she was able to dictate her next step… a very brave and very independent woman.
I hope she moves on with peace and full knowledge of the love surrounding her. I am absolutely sure it will be painless… for her if not for you and the rest of your family.
My thoughts and the thoughts of many here will be with you over the next few days and beyond.
Regards:-D
Dai.
Hi Judd,
You paint a good picture of the pain.:-D
I was right back there with you. Mine was a very similar story with two collapsed vertebrae that had crumbled into small picees and were pressing into my spine… and my GP, after months of agony and 10 weeks sleeping upright in a chair, sent a chiropractor to apply massage and pressure points. Luckily for me he examined gently by sight first… and spotted something amiss. He phoned my GP and told him to order a CTScan pronto… he saved my life.
The CTScan ended with an Oncologist telling me and my wife that I had secondary bone cancer, primary unknown… within 2 hours I was rushed across South West Wales to Swansea (75 miles away). 6 high dose radiotherapy sessions followed over the next 7 days and at the end of the week I was not only walking for the first time in 3 months I was also pain free… bliss.8-)
I can't say that there won't be uncomfortable times ahead during treatments Judd… but 4 years down the line I can honestly say that the only pain related discomfort has been the Bone Biopsies… and they are essential procedures. In my scoring one 'super spasm' and you know what one of those is I am sure, is the equivalent of 20 Biopsies… a walk in the park for anyone who has had bad spinal pain.
Welcome to the forum… I hope you get as much out of it as you put in… 😎 🙂
Regards
Dai.
Drink your 3 litres a day Tina… and while on any sort of treatment add another litre or so. Also…spread your imbibing throughout the day… is pointless drinking like a fish up to tea-time and a then only a cup of tea or so up to bed-time.:-|
I often get high temperatures of 37.7/8, sometimes even 38 or just above… I am under strict instruction to ring in if I get near to or above 38… but… if my breathing is fine, with no sign of such modern diseases like 'gunge-on the-lung', or 'rattling exhalations'… then before ringing in I drink like a fish.. three or four litres over an hour. I find that that normally wins me another cap for Wales as I pee with a vengeance and my temperature virtually drops as I fill the bowl.:-)
I find that infection No. 123PPP is caused by forgetfulness to imbibe fluids over a day or so and a swift localised flooding sorts it out.8-)
[b]If, after the flooding, your temperature stays up then ring in straight away.[/b]
Of course, your discomfort might not be accompanied by a temperature… just discomfort… then follow the localised flooding manoeuvre… I am sure it will bring relief in more ways than one.;-)
Dai.
Hi Eve,
They left mine in for four weeks… at my first consultation after leaving hospital. I asked why then and was told that it was redundant… that they only left the line in if it was still in regular use. It took about twenty painless minutes from going in to the side room in the Daycase Unit with a doctor to coming out. The procedure wasn't flagged, i.e. we had no idea that they were going to take it out and Janet was surprised to see me back the waiting room after 30 minutes… expecting me to have to go up to Radiology (where they put it in) for the procedure.8-)
It sounds as if Slim's is still in regular use, so I imagine that is why he still has it in… handy though.:-)
My original line became infected and one line became blocked… they used the single line for three days until I complained that it was stinging when the saline was going through. My consultant came up to see me and injected some anti-biotc into the working line.. only for Janet to shout 'Stop'… which made my consultant jump… Janet pointed out that my skin was expanding under the line… and she was right… there was a reservoir of liquid floating under my chest… one line was blocked and the other was leaking. My consultant stopped its use and said that they would have to replace the line.:-S
It took three days before they could find a doctor able to carry out the 'one out/one in' procedure. Three days of which I was Neutropenic and feeling as ill as I have ever felt in my life. I will never forget sitting in a wheelchair in the waiting room outside the radiology theatre… piled with blankets and shivering uncontrollably. The tremors were so bad that I could not talk properly. Eventually they got me into the theatre and they carried out the procedure… I recall two of the theatre nurses arguing with the doctor that I was 'to ill'… but he wanted to persevere, saying that I would stay neutropenic until they took out the offending line. He was right… and within the hour I felt great and I was sitting up in bed eating chicken curry. In the meantime I had lost the window for my harvest and it would take another ten weeks before the wired me up again.;-)
All I felt when the doctor took out my line was a couple of tugs but as I said, completely painless.8-)
Dai.
Hi Vicky,
You have to remember that those of us who offer advice here do so with all the benefits of experience. We are looking back and recalling what it was like for us… we recall the procedures and the side-effects, and the processes… but we rarely tell of how we felt at the time… mainly because our fears and apprehensions have been replaced by the realities of the experience and its outcomes.:-)
I felt just as nervous as Colin… perhaps more, perhaps slightly less… but something very similar for sure. Two years down the line and you and Colin will be as familiar with all the jargon and the ins and outs of different processes and procedures as anyone… at the moment you are caught up in a fast moving world of treatment, with little time to take stock and develop an interest in the wider world of MM.:-|
That time will come… but for now you are both trying to cope after your own fashions… both facing up to your fears and your hopes… some spoken, some not… some put to the back of your mind or beyond to be confronted another day… perhaps never… for now It doesn't matter.:-)
My mantra was 'Whatever It Takes'. I developed my mantra as a strong staff of positivity which I used alternatively to lean upon or beat down a path when negativity raised its head.
I was scared… MM is a scary disease… I was scared like I used to be scared of the dark… there were so many imponderables… so many uncertainties… words, medical phrases and terminology surrounding MM and its processes and procedures. I was scared of not understanding what to expect.. especially when we got home from a consultation and Janet and I would have different understandings of what was said or what was going to happen next. We have all been there or thereabouts Vicky.;-)
By the time I went in for my SCT I was apprehensive… no… more than that… I was still scared… but I wasn't frightened. I made sure that I had a full understanding of the whole SCT process… from the Mephalan and the iced lollies to the full proceedings of the day I got to go home. I had wonderful tutors in Gill & Stephen who wrote a comprehensive and very human account of Stephen's experience of his SCT a few months before mine. (Gill might be able to bump up their blog – its well worth reading). 😎
Being scared is Okay, its human, its normal and to be expected… but there is no need to be frightened… we who are ahead of you are here to offer advices and answer queries… there is absolutely no need to be ignorant of the process… if you are unsure, ask… and believe me there is no such thing a a silly question… sometimes they are the important bits.:-D
Step by step, take it easy and slow and while we cannot answer or advise on purely medical questions we can cover the experiential matters of every process and procedure related to Myeloma's treatment.
Regards
Dai.
I built myself up for a holiday last September after a successful (while I was on it) but gruelling set of Cycles of Velcade. It was only a week back home in Fishguard, Pembrokeshire but it was a large house share with two sisters, two brothers and their spouses. The thought of the ten of us together for the first time… well, ever… thrilled me… and I was truly looking forward to it.8-)
I had just come out of hospital after developing an infection and a DVT… and because I was about to start my last Velcade cycle they gave me a week's rest from treatment. That fitted well because I was just starting my week's rest as part of the cycle… giving me two weeks off treatment.:-)
So we all gathered at my middle sister's country pub between Hereford and Hay-On-Wye for an overnight stay and set off in convoy the next morning. My wife Janet has a macular problem that, while not degenerative, becomes problematic in poor light.. and we had rain or dark rainclouds all the way… which meant me driving. :-0
I paid the price… I spent the week either in bed or on the sofa/chair with my legs up… one in particular doing a fair impression of an Elelphant's leg. My siblings were busy each day delving into records and visiting relative places for my middle sister's (Sian) family tree. Suffice to say there were lots of meetings in pubs various around the north of the county and lots of meals with copious amounts of beers and wines etc. I smiled and encouraged but could not move about and was banned from alcohol… in short what had promised to be a wonderful time was in fact a miserable, painful and uncomfortable time… I just wanted to be home.:-S
Since then I have been very nervous about driving any distances and very reluctant to consider a holiday of any kind. But on the Jubilee week-end I drove half-way from Nottingham to my sister's pub and all the way back.. with no reaction in my leg and apart from a bit of stiffening up (accepted as normal) I felt quite well.8-)
I'm not getting carried away but this little victory has given me confidence… something I have never lacked in my life prior to MM. I have come to realise that I have developed an attachment to home and familiar things that goes far beyond normal reliance… and I am determined not to let such reliance dominate my life.:-|
Just saying.:-D
Dai.
Hi Vicki,
I am in Tom's school… it is hard and at times unpleasant but ultimately it is worth it.8-)
I only got enough Stem Cells for one SCT and it relapsed after 10 months… we had a prognosis of 3 to 5 years after doing so well on CDT (from a very tenuous starting point of 3,500 Kappa Light Chains to full remission in 4 Cycles) but unfortunately it wasn't to be. :-/
My SCT was draining… I found it extremely hard to maintain any sort of appetite and just as hard to force myself to take on fluids (I really intended to but my intake and urine was measured and so I ended up with a fluids drip as a constant companion for the best part of 10 days). My wife caught a stinker of a cold and so I had no visitors for 2 weeks but in truth I was glad of that.
The thing is I was rock bottom physically, completely drained of energy, with no appetite and having physical difficulty drinking… but I wasn't in pain… I didn't feel ill as such… just empty and lifeless… like a cardboard cutout of my former self. I was literally waiting for my system to reboot – which is exactly what a SCT does to your system… and in the meantime I just had to get through each day with as much good grace as I could muster.
Having free TV, Radio & internet access, plus my mobile phone, meant that I could stay in contact with the outside world… although, in truth, I wasn't very communicative beyond blogs to this forum and phone calls to my wife and children.
But it passed… with no more than a couple of days with a slightly sore throat and a few days (2 or 3) where the runs became a very interesting companion…
Would I do it again for just 10 months remission (of which at least 6 were recovery)? Too damn right I would.;-)
No, the whole SCT process is most unpleasant… but not half as bad as its press.:-)
Dai.
Just seen Siobhan's post on Facebook…
Bridget's funeral will be held at 10:30am on Wednesday 4th July at Stopsley Crematorium, Luton (LU2 8DD).
Flowers from family only, but donations welcome to Myeloma UK.
Dai.
