[KeithH17Participant]

Hi everybody,I'm now on my rest period after finishing 2nd cycle of Velcade last Monday.
Things are starting to catch up with me now and yesturday was the first time since starting this regime that I have felt that my body is well and truely under attack.
Good old Dex started it all and now I think the Velcade is having it's say on how things are progressing.
I think the drop in my Platelet count is having an effect, which has gone from 180 at the start of the treatment to 110 at present.
Other bloods have remained within the parameters of what could be described as fairly normal.
I'm very tired most of the time and find that when I do want to sleep I become restless.
My taste has just about gone and my water is the colour of Aspall's Cyder Vinegar so I'm going to need to take on yet more water.
I think it could be some kind of infection so I need to get it sorted and quick.
That said my temperature is ok and I'm still eating well even though everthing tastes like compressed cardboard,not that I've ever tried eating it.

Good health to all and till my next report bye for now.

Keith.

[mhnevillParticipant]

Hi Keith

Hang in there! Isn't it difficult trying to drink so much liquid. I don't like the tast of water so am becoming quite an expert on low cal squashes! Isn't it odd when we find ourselves monitoring ourselves by the colour of our wee!!!!
Do hope you settle down on the Velcade and that it helps your numbers.

Very best wishes.

Mavis

[adminKeymaster]

Hi,

What is your treatment cycle?

I'm on Dexa, Velcade Thalidomide on 3 weekly cycles with daily thalidomide and Velcade (1mg/m2) on day 1, 4, 8 & 11 and Dexa (4%0mg) on day 1,2,3,4.

I feel very rough on day 5 & 6. I find that drinking a lot of water makes all the difference – by a lot I mean 3-4 litres a day. I find anyway that even though I crave food (and I eat too much) in fact the only thing that tastes good is water.

I also eat prunes to keep my bowels free (I think some of the toxic metabloites go out that way too).

What I find really weird is how when I feel 'rough' I can't imagine feeling ok ever again, or beleive I ever felt ok, and when I feel ok I cant beleive I ever felt dreadful to the point of being glued to my bed unable to even read, listen to music or watch a film. So, courage the bad days pass…

[RozParticipant]

Hi Keith

Hang on in there mate. Come on you can do it. Michael stopped eating when he was on it so I'm glad you haven't.

Please don't give in.

I wish I could do something to help you, having seen things before. Just Drink, Drink, Drink.. Eat when you can too

All the best Keith
your mate Roz:-P

[brochoParticipant]

Hi Keith sorry you are feeling lousy All you can do is listen to your body and give in and rest when you need to The taste thing is the worst symptom I think , drives me nuts Perhaps someone should open a restaurant for people who are taste compromised?? Could call it Th e Cardboard Cafe? Sorry I am in a silly mood today Hang in there Keith it does get better and you will struggle to remember how rubbish you felt !!love Bridgetx

[sandraParticipant]

Hi all ,

Cycle 4 of Vel/Dex halfway under my belt and feeling pretty p****d off with it so far . Very tired and the taste is disgusting !! After a rapid drop from 20 to 11 the counts are static but my very enthusiastic Doc in Eastbourne still assures me he is not worried by this and its not just the pp,s he is interested in but the whole picture but it is very hard to join him in his enthusiasm !!I think that although I havent suffered any major problems or PN with it the whole first relapse scenario has really got me down this time .
I am struggling to drink the required amount unlike first time round when I was the most boring person on earth extolling the virtues of constant hydration , I think 2 years of remission almost put me into denial and it has been harder getting my head back round it all . Also my teeth are so sensitive cold drinks are not on the top of my hit list !
Anyway sorry it is a bit of a whinge I really have just had enough today and you are all on the receiving end of it ! Normal service will be resumed as soon as possible once I have given myself a swift kick up the posterior !

Sandra xx

[MinParticipant]

Sandra
You are allowed to moan all you want. The sensitive teeth thing was something Peter had with velcade and still cant manage a drink out of the fridge.
I don't know that water is the absolute advise, as I watched a programme that showed that as long as its liquids that will do.(NOT ALCOHOL LOL) Get some sensitive toothpaste and don't wash your mouth out just spit it out, it works better that way.
Good luck
MIn

[KeithH17Participant]

Spot on Sandra,I start my 4th cycle on Friday and I'm not looking forward to it at all.
Last week for 3,consecutive days I was so tired it was actually keeping me awake if that makes any sense.
Drinking 3-4 Litres ain't easy as you say.
Try Becks Blue (none alcoholic)Larger which are better than plain water and taste the nearest to the real thing which I deny myself while on treatment.
I have had spasms in my right hand and foot but only for a very short time.
Otherwise I have been ok except for the Dex which has had a bigger than ever influence on my mind and body.
Yeah I'm sick of it now same as yourself but what can we do other than battle on and fight the good fight?
When in remission we all go into denial as we get used to being well but it does'nt last and we soon find ourselves right back where we started.
I was even forgetting myself and starting to make long-term plans,what fool am I?
I was getting back to the Keith before diagnosis,well trying to anyway.
But you can't draw a line under this Sandra,it's a battle that can't be won
but a fight that must be fought.

Take care of yourself and live every day to the full.

Keith.

[KeithH17Participant]

Hi Nigel,I'm due to start my 4th of 8 cycles of Velcade+Dex on Friday.
I feel rough now most of the time but mainly the 4,days after the end of each cycle.
Also the effects seem to be accumulative the further I go into the treatment.
If this continues then by the time I get to the 8th I'll most likely be dead LOL.

[KeithH17Participant]

Thank's Roz…Don't worry my love I won't give up.
It's not in my genes.

Keith.

[sandraParticipant]

Thankyou guys ,
I just seem to have hit a wall at the moment with the whole bloody lot . Like everyone else life is so busy and I just wish I had the energy to deal with it all . I much preferred CTD which didnt have me tied to the hosp 2 days a week and I didnt look like a pin cushion ! But I am determined to get on with this and enjoy another stint of treatment free time after the 2nd transplant this summer .Depending what Kings decides to do with me .
Good luck with yours Keith and thanks for the advice min
Best Wishes
Sandra x

[brochoParticipant]

Hi Sandra hang in there I am sure you will get a lovely drug free summer . I do know what you mean though ,at times it just seems never-ending But the sun is trying to shine and it helps to make us all feel better love Bridget x

[BADGERParticipant]

hELLO kEITH

I have been reading a report from america where they have decided to give velcade once a week only they have found out that it has the same effect but almost non of the side effects I dont know why we dont get that here it would but a much better way of treating the disease

Love Jo x 😎

[zasrsParticipant]

Hi All

Gordon had velcaide last year at Kings and because we live in sussex he had treatment once a week with a week off and seemed to sail through the treatment ( except for the dex grrr:-( ), he went into remission after the 3rd cycle, but had 6 al told prior to sct. maybe the americans have done more recerch and i x weekly is better for side effects.

Good luck all you velcaide junkies!!!!

Sarah xx

[GayeParticipant]

On my first clinical trial with velcade in 2005 it seemed to be the standard of giving it twice a week but a lot of water has flown down the river since then and they now have a much better idea of side affects globally to show now that once a week delivers the same result without the some of the nastier side effects. I understand that a "son of velcade" is on its way (don't know when) which cuts out PN altogether. What joy!

So much has come on stream since I was first diagnosed back in 2004 compared to very little previously so things are moving for our benefit more than ever. That's great news maybe for some of us but also for future patients. Hang on in there

Love, Gaye…

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