[KeithH17Participant]

Hi all,thank's to all for your recent posts and advice.
Went into Hospital today to start 4th cycle of Velcade.
Did'nt even need to say anything as to how I was feeling as the nurse beat me to it.
"Whats wrong keith you look very tired,your eyes look swollen and baggy and you're just not like your normal self".
Reminded me of that monologue"by gum you do look qu**r
I told her that I've been like this on and off for around 2,weeks and finding it very difficult to shake it off.
So the upshot is the dose of Velcade will be reduced in order to prevent the PN/Spasms getting worse and the Dex will be given in a lesser and more gradual way to reduce the side effects during the rest period.
I was told that my haemoglobin had dropped which was causing the increased fatigue,although not to dangerous levels.
What is strange is that my Platelets have actually for the first time gone up from 102 to 107.
The sister said that the reduction in dose will not effect the potency of the drug but should reduce the side effects and head off PN which is the main concern.
I have also been given an appointment with my Consultant which will be at the completion of the 4th cycle,this no doubt will be to discuss the success or otherwise of the treatment and wether same will continue.
I am currently on 2.6mil Velcade plus 20mil Dex taken day of injection and day after during first and second week then 10,days rest in between.
What the new dose will be I don't know but will do on Monday.
Will keep you updated.
Back to the hot flushes again,feel like I'm going to explode.
I'm on fire at the moment and all for the wrong reasons LOL.

Stay well everyone…Keith.

[MinParticipant]

Im sorry your having a tough time Keith, that velcade is just so toxic. Get yourself some good wholesome foods and fruits to counteract the toxicity and drink drink drink drink. to washout the chemo.
Swollen baggy eyes was the first sign of Peters MM which attacked his kidneys 1st
My hubby likes water but just gets sick of it, so I get him fizzy water in bottles, flavoured water in bottles cans of 7up. One of those water filter jugs, soda water, and finally tonic water. In fact he is awash with water, and hasn't had a drink(alcohol) for ages and ages, soda water is good for kidneys but don't overdo it.
Hot flushes well,l we women of a certain age know all about them LOL but they help to keep the heating bills down HE hee. Seriously though, I hope you pick up soon and that the reduced dosage makes life with velcade more bearable, cool showers will help and looser clothing; more importantly are the numbers going your way on it?
Keep your chin up mate
MIn

[KeithH17Participant]

Hi min your opinions are always of great comfort to me.
According to my blood tests my Kidney and Liver functions are ok.
The swollen eyes are down to extreme tiredness and fatigue.
Also my skin looks bleached,in fact I look like an albino LOL.
I am also off the alcohol,none at all since 12th Jan,see I even remember the date who's counting haha.
Mind you I'm starting to wonder if it would make any difference if I did have a bender now and again during my rest periods maybe and something to look forward to.
Put it this way I could'nt feel any worse and quite possibly better due to the fact I would'nt care much either way.
At the moment I drink Becks blue alcohol free which does'nt have the metalic taste that most alcohol free lagers have and is nice and creamy.
I would personnaly recommend it but still no substitute for the real thing.
I also drink lucozade and powerade orange as well as spring water but never flavoured,has too much sugar.
My taste is vertually none existant so subtle tasting foods are a waste of time to me.
Hope Peter is doing ok?
Take care both of you and let's all have some good health for a change.

Keith.

[KeithH17Participant]

Had my 2nd injection of the 4th cycle of Velcade yesturday and the dose has now been reduced from 2.6 to 2.0 Mil.
I asked about the Dex and was told that will also be scaled down from 10 to 8 and then to 6 and so on as it's thought it could be the reason for the extreme fatigue,and should also minimalise the side effects when entering the rest period.
My latest bloods rate as follows:-HB:10.7 WBC:3.1 Plts:107 Neutrophils 2.0

Hopefully this will put paid to the PN/Spasms which is my main concern.

Keith.

[MinParticipant]

Yes Keith we got good news today, HGB13.3 wbc 4014 plts171 neut still low at 1.67 but double last months. More important a 75% reduction on light chain numbers. Anyone know what MONO is? or does it matter?
I hope your lower dose helps you to cope with the damn treatment, Peters lower dose of Revlamid last time has been beneficial as he is more like himself again. Cantankerous argumentative and not sleeping about 15hrs in 24
Waited so long for good news its like winning the pools!
He had spasms like yours and got some quinine of Dr which got him over it.
Min

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