Hi Wendy,
Like the others I am hoping that this is a blip and your next readings are back to 19 or below.:-)
I am Bence Jones too and my treatment post relapse usually started at approximately 400 light chains. Velcade to Revlimid was 425 due to waiting to go on a trial that I just missed out on and Revlimid to Bendamustine started at 535… I believe that they would have stood out for 600+ but my platelets dropped from 150 to 70 in 3 months and they were concerned about catching hold of it before it spiralled out of control (my platelets have climbed back up to 80 then 90 in 2 weeks, so it looks like they are on their way up again which is excellent).8-)
If you are relapsing there will be no rush to start your next treatment… at the current rate I believe they could watch and wait for another couple of months yet… but once again I hope that your light chains drop again… if not this cycle then the next.:-D
All the best:-)
Dai.
Hi Liz & Kev,
From what you have said here and elsewhere it certainly looks as if the medics haven't managed to get on top of the original infection… with different shades of it reappearing and causing these repetitions which are both worrying and inconvenient to say the least.:-P
I have been suffering with C: difficult, a particularly nasty stomach bug which is both extremely unpleasant in its side-effects and completely draining… I put my Revlimid failure firmly at its door because the Rev was not being given the chance to properly absorb due to the actions of the bug. The thing is It developed in early May but was not diagnosed by the medics until late July… although several people, non medics all, asked if it was possibly C: Diff because they had either had it themselves or knew of someone close who had been suffering from it. It is now under control but I am more or less under permanent antibiotics to keep it that way.:-|
I hope that you can press for fourth investigation of Kev's repeating condition while he is well and not have to ask while they are treating him again… with the usual cocktail of meds, ignoring the past manifestations and only dealing with what is in front of them… perhaps your consultant is the one to approach because Kev's quality of life is being seriously undermined by this condition.:-(
All the best
Dai.
Hi Keith,
I don't know where to start really…
Yes, you, we, have to press on and try to stay positive while ever the medics offer treatments… CDT may well provide a good bit of breathing space… it worked miracles for me first time round.
I realise the implications of your consultants remarks about your bone marrow but it may well stand up to the efficacy of CDT and even be strengthened by it.8-)
Good luck with your blood and thunder infusions tomorrow… I noted that your Nuets are up a little, that's something.;-)
I'm feeling reasonably okay after my 2nd infusion Cycle1… but it's very early days yet… and I had 2 relapses in a year (January and December 2012) so I'm hoping for some grace and space from Bendamustine. Apart from my WBC and Nuets dropping to 3.4 and 1.2 respectively (consultant says its due to the treatment) the rest of my bloods are okay, so I'm hopeful and feeling positive (genuine feeling, not just enforcing my mantra) but the first results back in just over a fortnight's time will give the first indications… so my objective is to stay infection free, work on my novel like there's no tomorrow 😀 and enjoy my appetite and Janet's company in relative limbo.8-)
Keep in touch and let us know how you are progressing.:-)
Regards
Dai.
Hi Keith,
I see that you are in tomorrow for bloods, so I'll reserve judgements or advices until you post the results. It seems very early for Bendamustine to Bomb so like the others I'm hoping for a blip. Like Eve says, the consultant is being honest and has put a couple of alternatives on the table. CDT worked miracles for me as a frontline treatment and as I have stated here several times before, I wish I had run with the remission from CDT rather than push ahead with my SCT… 5 months in and still in full remission without a Myeloma cell in sight when they started down the SCT route… Jo (Badger) got a couple of years or more from CDT and I felt wonderful after it… so.. I wouldn't mind another go at CDT somewhere down the line.
Chin up and the best of luck for tomorrow.
Dai.
Hi Keith,
I had my second infusion of Cycle 1 on Monday (infusions on days 1&8) and apart from feeling tired and a little stiff and sore from all the sitting around I am not too bad… but it's early days and I am keeping an eye out for any side-effects that may creep up on the blind side. I still have my appetite and my C: Diff seems to be under the control of the antibiotics so I am quite happy in that respect… as for how its doing only time will tell.
My HGB was 10.1 (last time 10.3) WBC down a little from 3.9 to 3.6, Platelets up to 90 from 80 last time and 70 the time before, so that's looking okay but my Neuts are down to 1.2 from 1.6… the WBC and Neuts resulted in dropping the strength of the Bendamustine from 60 per sq inch (or something similar) to 40 per sq inch… in an attempt to stop the drops. They don't want to see me for the best part of 3 weeks which surprised me… I thought they would be keeping an eye on my bloods… but apparently not -hey ho.
As you point out, infections are the key danger and I will be watching my signs like a hawk,,, first sign of anything dodgy and I'll be ringing in – no brave soldier for me I'm afraid,
I read your post on your B Bombing thread and I'll answer you over there.
Take care.
Dai.
Hi Susannah,
I have followed Michael's progress through your posts on various threads and I hope that by now they have found a pain management regime to give him complete freedom from all but the slightest of aches and pains… he deserves that with bells on. 🙂
What is the state of his MM? Are the hospital still measuring?
Lastly, how are you? Coping I know but that can have its toll, especially given the circumstances. Perhaps you could have a word with Gill (Seaward) who had a similar situation with her husband Stephen who passed at home recently. I know she doesn't mind talking about her and Stephen's experiences and what she has to say might well offer some kind of guidance or comfort. 😐
I really feel for you… but you are not completely alone… you can post your coping mechanisms, your fears and realities or just rant and/or rave. We will listen and where appropriate, respond… and regardless of the length of each reply, each comes with loving support. 🙂
Dai.
Hi Sal,
I hope that the medics get your Dad's (Name?) Kidney function up and running PDQ (I am aware of his age but Kidneys usually respond well).
Regarding the crushed vertebrae, radiotherapy can bring about almost magical results as reported by several people on the board. I had two crushed vertebrae, with one being forced against my spinal cord by the tumour. I had 6 days of Radiotherapy and after 8 months of intermittent (with the last 3 months permanent) chronic pain and spasms, at the end of the course I was instructed to leave my bed and walk. My pain had virtually disappeared after 2 sessions and completely after 4 so, when I was told to leave my bed for the first time in a week and walk I did… with no pain and feeling very good if also very weak. I hope your Dad has a similar experience. 🙂
Being over 70 (the nominal cut-off age with exceptions for the very fit) your Dad will not be offered a Stem Cell Transplant but there are a range and variety of treatments available that can offer your Dad good bouts of remission. Your Dad's heart problems may be the fly in the ointment regarding the choice of treatments but hopefully they will get his heart settled and find a treatment to suit. 😎
Regards and Best Wishes 🙂
Dai.
PS Is your Dad in a Derby hospital or the City Hospital, Nottingham?
Hi Scott,
I too will be enduring the joys of Bendamustine on Monday next… I shall think of you as they struggle to find a vein. 😉
We have a free drinks and sandwiches trolley which makes its rounds of the Day Case Unit between 12 and 2 PM – so that, literally, caters for the eating problem. 😎 The same trolley glides around dispensing hot & cold drinks and a nice variety of biscuits from 10 to 11am and 2 'till 4pm to ensure we don't fade away. 🙂
Happy New Year to you and yours Scott… and I hope we both feel and realise the benefits of this treatment. 😎
Dai.
Hi Rosie,
[quote][i]I have to say that the main side effect for me was how tired and weary it made me feel. A bit of nausea but nothing that the tabs couldn't sort.
No sickness but I did have to reduce the dose of Thalidomide as that did cause me more face/lips tingling and 'clumsy fingers'. I had the same during CDT so I don't associate that with taking Bendamustine.
I've also developed, what to me, feels like muscular pains in my back – which I never had before commencing the treatment. A CT scan revealed two more lesions which will have to be sorted – but they are not in the areas where I feel the pain, weird or what?
I too, am like you with no veins to speak of, but the staff at Kings are experts and got one easily every time. My first infusion also took an hour but the following ones only 30 mins, so….. you might have a nice surprise next time! [/i][/quote]
Hi Rosie,
Thank you for the report by way of first hand experiences. I had a slight feeling of nausea on Monday evening but not enough to make me take the tablets (although I do understand that they work better as a pre-emptive measure) but nothing at all since. 🙂
Janet went out to do some bank business, shopping and then onto our daughters for tea and a chat – an excuse to see our Grandchildren, Alfie 6 and Edith 4, as we haven't seen them over Xmas because Alfie had a dose of 'Proper Grown Up' Flu. It meant that she was out for 5 hours and I'm glad she had the chance to escape all things MM for a few hours… she has them again tomorrow, all day and their last official day of freedom, although they won't see it that way as both of them love school. 🙂
She will have them from 8 am to 6 pm… at their house (usually ours) because we don't want to take any chances regarding any lingering 'Flu' germs, although the rest of the family escaped it as far as I know and I am aware the danger period is during incubation and the first few days but Janet is determined to ensure that I stay germ free until after my 2nd infusion at the very least. :-0
As for the fatigue and weariness, I thought I was doing well until I got up. I was watching a film on iPlayer via my Mac, which resides on my over-bed table, so I got up an hour or so after Janet had left. Ablutions, getting dressed, making a cup of tea and getting settled down in the living room absolutely did for me. I started sweating profusely (did I mention that I chose Thursdays as my '[i]Dex Day tm[/i]') felt breathless and I did a fair impression of a damp piece of lettuce. It took two changes of tops, that cup of tea and a dose of 'Bargain Hunt' before I felt fully recovered (by lying back and doing little to no physical activity standard of recovery). So a lesson learned… 'Do all gently and very slowly', starting tomorrow, after breakfast, 7.30am latest as Janet sets off to the 'Mamgu Party Day' at that time. (We are known by our Grandchildren as 'Mamgu & Tadcu' – Welsh equivalent of Grandma & Granddad, the 'u' pronounced as 'ee' and the 'c' in Tadcu the same way as kicking 'K' – 'g' feminine & 'c' masculine… such are the vagaries of my mother tongue). 😎
Funnily enough, the reason I was bounding about today was due to feeling far less stiff and achy, especially across my bad and shoulders of which were fine pre-'Bendamustine' but ached quite a lot through Tuesday and Wednesday. I seem okay now though, touch wood. 😀
One of my Nurses, Jesse, won the Day-Case lottery to 'find a vein and did it first time… but has left a fine 1.5 inch square bruise which needs to clear up by next Monday if they want to use the same place or the same hand (always my left). By the look of it, touch and go, which will make things interesting. 😀 I've been periodically warming my right hand up by means of a microwaved hot bean bag and tapping for veins like Billy-O, with one distinct possibility – but they will have to semi-roast my right hand and tap bloody hard to get it because it disappears completely under normal conditions. 😛 😉
Thanks again for your 'B' experiences. 🙂
Dai.
Hi Badger, Eva, Vicki, Tom, Elaine, & Eve.
Thank you for your messages of support, they are truly appreciated. 😀
I will keep you in touch as the treatment commences, especially regarding the processes, procedures and side-effects… they may come in handy in the future, although I hope, truly and deeply that that need is a long, long way down the line. 😎
Much regards 🙂
Dai.
Hi Keith,
I was in the Day-Case Unit yesterday for bloods etc and signed up for the Bendamustine… which I will start on Monday. Consult at 10.10 then a short wait until 11.30 for my Bendamustine.:-)
My treatment is slightly different to yours. Bendamustine on Days 1 & 8 with daily Thalidomide every evening throughout treatment and 40mg of Dex each Wednesday with a course of antibiotics for the first two cycles.:-)
HGB 10.3 WBC 4.6 Platelets 71 Neuts 1.7 😎
So, all set for Monday and I'll report on Tuesday. Good luck with your treatment.;-)
Dai.
Hi All,
Xmas came and went quietly… just me and Janet due to Flu Bugs, colds and sore throats spread evenly amongst all the immediate family… the most devastating with young Alfie (6) going down with his first grown up flu… which stopped us spending Xmas day with the family. 😛
At the Day-Case this afternoon… bloods checked and verified and I was given the choice of Friday (Tomorrow) or Monday for my first dose of Bendamustine… I chose Monday as we normally have the children after school on a Friday… and it gives me the week-ends clear too. 🙂
So here we go on the next great adventure… 😎
Dai.
Hi Keith,
One of the factors in taking me off Revlimid was a Platelet reading of 90, My Platelets had dropped over 4 months from 150 to 120 to 100 to 90… and their concern was that if the Platelets kept dropping they might not be able to get them back under control! Looking at your readings their reasoning seems a tad dubious.:-/
While in hospital last week my HGB dropped to 7.9 and my Neuts to 1.2… (a result of the Sepsis and the Lung Infection) so they gave me an early Xmas gift by way of 2 bags of blood. 1.2 is the lowest I have been since my SCT. Hopefully it will rise back over the 2 point… (average 2.5). Your platelets reading seems inordinately low… I hope they can get it up over 20 and possibly 40/50 soon. 🙂
The medics keep on telling me to avoid infected people and unfortunately I have to put their warnings into practice immediately.:-S
Our daughter Kirstin rang us yesterday to inform us that Alfie (6) has suspected boy-flu. His GP told his Mum to keep him wrapped up and warm over the week-end and he will be given a course of anti-biotics on Monday. Janet and I are devastated… we were to have them for tea on my Birthday (24th) and we were all meting up at Son-In-Law Andy's parent's house for Xmas dinner. an annual event. But now Janet and I will have to cry off.:-(
I am due back at the hospital's Day Case Unit at 3pm on Thursday 27th for bloods and other tests to ensure that I am fit enough for my first Bendamustine Treatment on Friday 28th. I have been given fair warning to stay away from anybody with any case of lurgy… and those in contact with anybody with any case of lurgy. :-0
So no contact whatsoever with lurgyfied people and those in close contact with lurgyfied people… which means Alfie and Edith and their Mum and Dad and Dad's relatives. It is always a lovely get together on Xmas Day and the fact of not being able to see Edith and Alfie in particular leaves Janet and I feeling bereft.:-P
It also affects my Birthday tea-party bash tomorrow and our Boxing Day get together/visits. All for the sake of staying bug free for Bendamustine. Thank goodness for Skype! 😎
Janet has got everything needed for our Xmas dinner because we had planned our own Xmas dinner on Boxing Day in the knowledge that this may well be our last Xmas together… and whichever/whatever it has now been diluted by lurgy and its effects. 🙁
Ho Hum and Ho, Ho, Ho… but never Bah Humbug! 😀 😎 😀 😎
Dai.
[i][b]Nadolig Llawen a Blwyddyn Newydd D[/i]da.[/b]
Merry Xmas & A Happy New year to all who sail this board. I wish you peace and small joys, happiness… fine but contentment better. I hope that MM stays in the background… unseen and unheard for a few days at the very least. 😎
Much love:-D
Dai.
Hi All,
Thank you all for your messages of support… I'll try to answer some of the points raised over the week-end. 🙂
I'm sitting up in bed watching re-runs of Top Gear on Dave waiting for Janet to arrive with my going home clothes. I've been through the discharge process, got all my meds and I am free to leave when my 'True-Love' TM arrives. 😎
It's now 12:06 – Top Gear is numbing my mind which is useful because otherwise I'd be crawling on the ceiling. In this awful weather and with all the Xmas traveling to contend with I want my 'True-Love' TM to drive carefully… but Top Gear is showing speeding cars ad-nauseum and I am imagining my 'True-Love' TM drifting side-ways around corners at 80 miles per hour to get to me soonest.;-)
Never mind… home soon.:-D 😎
Dai.
