[GeorginaParticipant]

Hi all

When we were chatting to the pharmacist the other day about velcade, as others have said the have to make the dose up for your weight etc. It doesn't take log to do but just gets stuck in the pharmacy queue! They want to be sure you are going to have the velcade before they make it up because each vial cost £900!

He also said the manufacturer says it is only stable for 8 hours and after that they can't use it.

Best wishes
Georgina

[PhilKellyParticipant]

Hi Keith, good to hear its going ok. Have just started cycle 4 of V and the fatigue effects see to be cumulative. Worse tho they seem to be harder to predict when bad days will hit. Still way easier than CVAD though.

Anyone else had muscle weakness with V?

[MinParticipant]

MMM
Peters muscles which he had worked on replacing for months went south!Muscle tone shot to that hot place your not allowed to type, after 4 cycles. Week as a kitten and tired also. The 3rd scyle started to show it had stopped working altogether but went on to do the 4th just in case it was a blip. Now on Revlamid, not so severe, but very tired and lethargicc.
Min

[KeithH17Participant]

Hi Phil,yes not doing too bad on the whole but felt rotten last week for 4,days.
Have had slight tingling in my feet and fingures but seems ok now.
Very tired and my taste was practically nil for a week after finishing the 2nd cycle.
I am down for 8,cycles and start the 3rd on Friday.
I can't in all honesty see me completing all 8 cycles but I'll certainly stick with it as long as they want me to.
My Platelet count has dropped from 180 at the start to 108 at present.
I would think that they will be below 100 at the next visit on Friday.
All other bloods seem fairly normal.
I really do HATE this disease for interupting my life just when things were on an even keel during the 2,yrs of drug free remission.
Call me ungrateful but I just need to sound off now and again otherwise I would go bloody mad.
I'm only human afterall.

Cheers Phil and hang on in there,you and Gaye were my original insperation.

Keith.

[PhilKellyParticipant]

Hi Keith, know where you are coming from resenting the myeloma coming back just when you get back on track….. I was really lucky getting 4 years out of my SCT but ironically I was feeling good for the first time when it came back! I have been SO determined to keep doing stuff this time…. Tho its getting harder. Jealous of your platelet counts! I have been down to 35! Best not get in any fights I think! I think we all need to inspire each other just to keep going! Agree Gaye is always an inspiration!

[PhilKellyParticipant]

Thanks discussed with doc that muscle stuff in legs is more likely steroid related than V.

[KeithH17Participant]

When you say you discussed with Doc I take it you mean Consultant and not your GP,coz I'd take anything they say with a large pinch of salt.
Of course I know I don't have you tell you that Phil now do I?
My legs feel a little weak also and sometimes ache from top to bottom but it does'nt last for too long.
Maybe it will get worse further into the treatment I just don't know.
I also get tingling in my hands and feet but again only intermitant and I have told the Hospital this.
I started my 3rd cycle today Friday so I'll just have to monitor things on a day to day basis.

Here's hoping we can all give this rotten disease a good kicking.
I hate it with a vengence.

Take care…Keith.

[TRGParticipant]

Hi Keith,
I am about to start my chemo and have been choice of Revlimid or Velcade. I don't want to sound alarmist but another patient I have come to know has got bad case of neuropathy in his fingers. According to him he can just hold a pen in his fingers and his writing is like child's. I already have some neuropathy in my toes from thlidomide since 2005 chemo.
I would like to hear from others as I have to decide and make a choice very soon.
TRG

[KeithH17Participant]

Hi Tilak,is this your second relapse as Revlimid if I'm not mistaken is not usually given at the first relapse stage?
In any case I don't think it makes too much of a difference what you decide to have as all treatments come with some kind of side effects.
With Velcade it's PN and Revlimid DVT although these particular complications are extreme and can be treated by either reducing the dose,taking medication or in some cases if they get too bad stopping the treatment altogether.
There is no easy options with this disease,just sometimes the lesser of two evils if you are lucky enough to find it.
Best of luck on your journey and I hope you make the right decision that's best for you.

Keith.

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