[DaiCroParticipant]

Velcade, the treatment, its side-effects, its efficacy by 'normal' and/or subcutaneously procedures, seems to have been well covered here recently… I imagine because there are quite a few people either receiving it for relapsed myeloma or as part of a frontline treatment.

I heard so much about it as a novel agent, often in terms of a 'wonder' drug but I must admit that my overall impression, putting aside efficacy for the moment, is that it is a quite brutal regime.

Having finished Cycle 3 I am now on day 4 of my 10 day 'break' or 'rest'… but there is no break or rest… its a misnomer because the drug is obviously continuing to do its job while it lasts in my system and the side-effects, be they ever so humble or ever so painful, continue to define my life in terms of pain, lack of sleep and general fatigue and exhaustion.

All I can do is lie as still as possible and wait for things to get better… which I am ever hopeful they will and back to efficacy, I am remaining upbeat that Velcade is doing its job and getting me closer to or actually at CR (Complete Response).

There's the rub… I find it hard to tell the difference between the treatment and the side-effects, if that makes sense. I assume that at some point, when the final shot of Velcade has weaned itself out of my body, that I will feel human again… its just hard to see that at the moment… I feel drained and in constant pain… or rather the threat of pain if I make a wrong move etc.

Every time I go to the hospital I fill in forms to show how my condition is changing.. especially re: peripheral neuropathy in my feet and hands… and so I mark the changes, indicating what was existing and what is new etc., but I don't believe that anyone reads them… they are placed in my file for my consultant to read when I finally get to see her and then she has to make a snap decision on whether to reduce my infusion etc., etc.,

Moan, groan, moan, groan, yadda, yadda…

Truly I am grateful for the treatment… and it seems to be working (I'll know for definite on Monday) but in the meantimes I can hardly walk and when I do it shatters me… and I could cry for lack of sleep…

I just would have liked someone to have sat down with me and to have explained what might or could happen during the treatment and what, if anything, we could do to either improve the conditions if and/or when they arose… its not to much to ask… surely?

Dai – like Eyeore.. but with justifiable cause.

[mhnevillParticipant]

Hi Dai

I can really feel your frustration. No, it is not too much to ask for that someone reads your feed-bcak sheets and has a sound conversation with you. It doesn't sound like rocket science you are asking for. And is it really that Drs are so busy? I don't know, but do get the feeling that Drs find time to do what they think is important. You would think, by now, with all the computer technology, that someone would have invented a programme that enabled the feed-back to be processed in a way that only took the consultant seconds to read and evaluate.

Do hope that this dreadful time is going to be worth it by being followed by a really long remission period.

Do hope your fingers are letting you keep playing. I have enjoyed your site and your songs.

Very bast wishes.

Mavis

[DaiCroParticipant]

Thank you Mavis… just letting loose a little but yes, my points are valid and it would not take much. BTW, thinking back I can honestly say that I have only seen one Doctor in our very, very busy Day Case Unit in the last four visits… its totally run by the nurses who ratify and conduct all medical procedures without any recourse to people with d and r in front of their names. 🙂 And they do so seamlessly and efficiently too… but they are far too busy for things such as feedback and general support. :-/

I can just about play… but without any kind of finesse but the plain truth of the matter is that I have very little inclination to do so because I feel so shattered all the time.

Good grief I've got a mood on today… enough!

Into the studio and pick up the guitar… right now!

Thank you Mavis… just what I needed.8-)

Dai.

[MinParticipant]

Hello Dai,
Peters time on velcade was reasonably good, except for the time it gave him pulmonary embolisms. He managed to go to work while on it, (Revlamind made him very ill) But on his visits to the day unit depending on his bloods and his responses to questions he frequently saw the Dr.
I am sure if you ask next time you are in they will get the Dr to see you, it may be that you just need a rest from it for a week or so to gather your strength and energy. HG being low may make you very tired. Do they tell you or fill in your little red book every week so you can chart your own progress? I am not talking about the light chain, just the red blood cells and haemoglobin etc. If you can see your at 8 or below its not surprising your tired. Peter was 8.8 today and is going in tomorrow for 2 bags of whole blood. Sometimes the staff are just too busy and these things get overlooked. Velcade is a chemotherapy after all and chemo makes you washed out.
Hopefully you will pick up soon, lots of vitamin C will help to make iron I try to keep kiwi fruits in Peters diet for that reason
MIn

[kaychappersParticipant]

Hi Dai
Think it is always good to let off a bit of steam rather than let it go round like a washing machine in our heads. Its enough you are going thru the pain and fatigue without having to listen to your head. Hope you get a little bit of playing. I remember going on your website and listening to your songs it really cheered me up. I have taken all day to do a little bit of ironing and now I am off for a sleep. I am lucky with my unit in that my fatigue in the first week was picked up as anaemia setting in again and I am having a blood transfusion Thursday. I do hope that they listen to you and if not I suggest being a lot more forceful when you see your consultant. Good luck Monday
Kay x

[DaiCroParticipant]

Hi Min & Kay,

Thanks for replying an supporting… I am sat at my desk recording and mixing and it has brought me out of myself.8-) I have my laptop on my bedside swing-over table and my desk in the corner of the room… so I haven't got far to go but it does make the difference mentally… even lying on top of the bed makes me feel less able.

I always ask for my print-out sheet of my bloods but very time they seem surprised at the request… its a wonderful hospital in many ways but sharing or supplying basic information is not one of its strengths… not in my experience anyway.:-|

I went 2 weeks with my HG at 8.3/8.5 and they were considering blood but then it shot up to 10.3 from a Monday to a Thursday (although I felt worse) so that was that.

I have been feeling sorry for myself these past few days, the PN that threatens to go over the top has been draining but most of all it is lack of decent sleep that does me… it always has and I suppose it always will now. 🙂

I do talk to my consultant… I ask what I think are the right questions but it is obvious to me that they are as frustrated by the lack of individuality in the approach to the medicine and treatment of MM as we are… CDT – SCT – Velcade – Revlimid – Ben/Pom/Kitchen Sink seems to be the approach… at least in my case AND to be fair… if the treatment works and Velcade gets me CR and some time to ourselves then I don't suppose I will be complaining one iota. :-/

I have always set myself high standards of honesty and openness in communication and I get upset when systems and institutions don't seem to find it either helpful or necessary to exchange information and make things plain and simple:

1. Talk To Me
2. Tell Me What To Expect (Sit Me Down & Spell It Out)
3. Give Me The Opportunity To Ask Questions
4. Make Sure That You are Sure That I Know What Is Going On
5. Start Over

Every single company and institution in the UK seem hell bent in knowing what we think of how they do things and what we think of the level of service they are offering… except the NHS.

Anyway… as you were… I'm working and that will keep me distracted… perhaps even happy…. if I allow myself the opportunity 8-).

Dai.

[BADGERParticipant]

Dia

keep on mixing, I am so sorry you have had such side effects lets hope the symtoms get better soon I agree the nursing staff are all about the treatment not you and the effects some times I think we need some pastoral care which is not all that evident thinking of you wishing you a good night sleep
Keep well
Love Jo;-)

[scott9Participant]

Hi Dai

You have my 100% sympathy. I know exactly what you are going through. There is no easy answer unless your consultant is prepared to switch you to another new novel agent. As someone told me during my time on Velcade…no pain, no gain. It didn't do much for me but there it is anyway.

My goodness how MM changes your life!

Good luck

Scott

[zasrsParticipant]

Hi Dai

I am so sorry to read about your rough time on velcaide, gordon was lucky he seem to almost sail through the treatment.he/we were very lucky at kings as there was a myeloma specalist nurse called sophie who we could consult at any time, she always came on the day unit. unfortunatly every hospital is different. i do hope your mixing and playing is helping. good luck on monday.

best wishes sarah

[MinParticipant]

I think anyone on Velcade dex/Revlamind and dex deserves some sympathy and understanding. Compared to Thalid they are good but the downsides are worse. I have watched Peter try to overcome the side effects of V&d and R & D and he was struggling constantly with side effects.
He went back on Thalidomide the other night… after a big break whilst in patient and he slept like a baby. No side effects to speak of (apart from wind) AND he said he feels stronger today.
We had a chat with Consultant today and he will stay on it after his transplant due in about 5 weeks. Knowing what all the other stuff did its a much gentler form of medication. Especialy as he does not take dex with it.
They always printed off his bloods for the nurses to read to decide what to do next and we didn't bother but now I insist on having it when they are finished with it. They have it on computer for permanent, normally I wave his myeloma uk diary and tell them need to fill it in.
Nice are the folks to blame, Drs hands are tied by what nice tell them.. I used to find the same thing in the police force, no one was allowed to use there common sense and or experience they had to follow guidelines or else.
Guidelines drawn up by ladder climbing individuals who know all the theory but have never been around long enough to practice it… Just look at the ever younger chief officers, and indeed younger consultants
But we have all been around long enough to know that some young bright spark will come up with the innovative idea of using common sense and it will go back to what it was.
Then they will take credit for being innovative by going back to the way it was!
If only life with cancer was that simple
Get your novel out and the mental challenge may tire you out enough to get some sleep.
Min
PS Dai I am a novice on my mac and cant imagine how you get music out of it, of your own making I mean mine just plays CDs I have garage band but not a clue how to use it.

[CarolBradley1Participant]

Hi
So sorry your having such a frustrating time and feeling so low – no surprise you feel so unwell when your on such a demanding treatment regime. Like you, I always feel so less able to cope when my blood count is low. My doctor put me on Aranesp (there are lots of other names for it too) and this did help a great deal – don´t know how appropriate this would be for you. It may be that you have already tried it but I thought it was worth a mention. I only had to do one injection every three weeks but it really did make a big difference between struggling and coping quite well.
Hats off to you for trying to keep going with your interests – it takes such a lot of teeth gritting and real effort – I was going to have an easier day tomorrow but you have inspired me to try and have a go at tackling a couple of jobs. I´m in chemo (revlimid) and although I do have the same problem with hands and feet at present my irritations are no where near as unpleasant as yours.

I do appreciate your thoughts on honesty and transparency in communication matters and I am really surprised that you haven´t seen a doctor in four visits especially given the side effects your experiencing with the Velcade. Do you have access to a didicated Macmillan nurse who might prove a continuous link so that there is a least some consistency for you.

Anyway, hope you have some improvement soon in any direction ( all directions would be great)

Very best wishes

Carol xxx

[eveParticipant]

Hi Dai
Sounds if you are going through the mill,so what can i say your knacked through lack of sleep,Let it all out if any body is entitled to blast off its you,think of it as just another hurdle,and if you refuse to jump over it,i,ll bash you with my hand bag 😛
Tomorrow is another day,try to stay positive,do not let your demons rise to the surface,
It does sound if your bloods need checking,you take care and remember,there are people out there thinking about you,even stupid scousers like me.Eve

[gina45Participant]

Dai i dont know what to say but agree with the others. I really hope you are ok, what a awful time it is for you. I cant imagine what you are going through but i do hope you start to feel better soon.
My mum starts this treatment anytime now, we are just waiting for the call.
God bless and take care Gina x

[GillParticipant]

"I just would have liked someone to have sat down with me and to have explained what might or could happen during the treatment and what, if anything, we could do to either improve the conditions if and/or when they arose… its not to much to ask… surely?"

I think that this b***tard cancer is so unusual and so individual that there is nobody that realy knows. So can they tell you what to expect??

Easy for me to say (it's my husband with mm)

I am hoping that by the time you read this you will be feeling much better and look forward to your posts Gill xxx

[DaiCroParticipant]

Hi Gill,

I realise and appreciate that the medical staff cant tell you how you are going to react to treatment, everyone, as you say, reacts differently but that is the content of treatment, whereas I am talking about the procedures.

If someone had said 'this is the procedure for each cycle: a,b,c,d,e' and if you react:

i) positively or ii)negatively to any of the procedures then theses are our options.

We usually give i)blood if your levels reach (?) or platelets if they drop to (?).

If you find that you are adversely affected by i)PN ii) Cramps iii) Fatigue iv) poojuice then we can offer x.y.z.

Here are a list of numbers to ring depending on the issue.

Which I estimate would take about 10 minutes to go through… and would make you aware of the types and kinds of issues that may or may not arise… but if they do then you know who to call and the possibilities of help on offer.

Its customer care by any other name… and in my book we are certainly due it.:-)

The staff are wonderful… they work extremely hard are are very caring… but even they have to fit in to a way of working and if the above is not on the agenda they cant offer it. 🙂

Dai.

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