Thank's guys…I've heard the second sct is easier but also that it can take longer to recover from so I'll take it as it comes and hope for the best.
Least I have experience this being my 2nd so I more or less know what to expect.
Bridget,Debs you are both absolute rocks,a great inspiration to us all.
Ian,what you say seems in agreement with many other patient experiences.
David…I'm not down,just abit Dextatude and I must be allowed that surely?
Finished 5th today so maybe just one more cycle and then sct around June?
Thank's again for your replys and keep posting your own progress.
We will beat this together.
Keith.
Hi Bridget,had a letter from The Freeman Hospital and an appointment has been made for 19th May with regard to a second transplant procedure.
By this time I will have completed 6,cycles of Velcade so they may be looking at going for the SCT in June.
Thank's for been the only one to reply and give support to my previous post.
I know I can always count on you Bridget and it's certainly most appreciated always.
You take care yourself and keep me posted on your own situation.
Keith.
Hi Anne,I was given a high dose of Melphalan prior to having my first SCT and it wiped me out completely.
I could'nt keep anything down for the first 10 days and was on a drip for a week while in hospital.
I lost a stone in weight due to the fact that the drug vertually destroys the digestive system and it took a further 3,months before I started to feel more like my old self.
That said this approach is neccessary to give the MM a good kicking and there's nothing better than Melphalan to do just that.
It's not easy but at some point things will start to improve.
Take care…Keith.
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.
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.
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.
Hi Nigel,they said to keep an eye on the spasms and if they become more regular to contact the Hospital asap.
It could be the start of PN in which case the Velcade dose would need to be reduced.
I'm currently on 2.6 mil.
The problem is that PN can become perminant if not addressed early,and that's one thing I don't want alongside all the other things.
All in all though I think I've got off lightly with Velcade when I hear of other people's experiences,but I hope I'm not speaking too soon.
Keith.
Thank's Roz…Don't worry my love I won't give up.
It's not in my genes.
Keith.
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.
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.
Yes you're spot on David,MM cells do have the ability to switch off and lie dormant for a while before returning to wreak havoc.
The bottom line is there's still a vast number of questions to be answered regarding Myeloma and although we have travelled some distance there's still a very long way to go.
To find an antibody that can be injected in the way a flue jab is given is the way forward if one can be found?
This would mean when the disease returns it could be tackled by your own immune system thereby downgrading MM's status to that of a chronic illness.
The US are pushing on with this approach in earnest and I hope they can crack it asap although it could be 5-10yrs away before a breakthrough is achieved.
Keith.
Hi Andy,I would agree with what Min and David have already said with regards to the SCT.
I had mine in May 2008 and unlike David did make the magic zero PP rating and held it there for 2.5yrs before my inevitable relapse late last year.
I am currently on my 3rd cycle of Velcade with a second SCT planned for around the middle of the year.
The jury is out on this procedure but the idea is to prolong remission for as long as possible so I would say go for it.
Keith.
Asked twice and still no go.
It seems this practice is a no go area around these parts so I'll just have to hope my veins hold out,even though the nurses are never shy to tell me they are just about shot to pieces.
One more on Mon and that's the third cycle completed and some well earned rest to allow my body to recover.
Keith.
Hi Gill,I am half way through the 3rd of a scheduled 8,cycles of Velcade+Dex and have to admit I'm starting to feel very tired and spaced out most of the time.
After the first cycle the side effects were few and far between but since then it's gradually started to have more of an effect.
Platelets have dropped but are still within the limits and I don't have any PN as yet so I'll just battle on and stay with it.
My face is a bit of a mess,all red and bloated,mornings in particular but that's the wonder of Dex.
I do feel better in so-far as the bone pain has all but gone but I'll only know for for sure if the treatment has worked at the 4th cycle stage when hopefully I've achieved at least a 50% reduction in my PP levels.
Hope things improve soon for Stephen and he starts to feel better.
Stay with it and best of luck…Keith.
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.
