Hi Sylvia,I did the full 8 cycles and had my 2nd SCT last month.
I was discharged from hospital 15th Aug and now recovering at home.
I contacted E-Coli while in hospital and was quite ill losing alot of weight which I don't have much of to begin with LOL.
I'm just about starting to feel more like my old self but still need to be careful in case of infection.
The only medication I take at the moment is an anti virus tablet which I will need to continue for 3 months.
My blood counts are starting to rise to near normal levels so all in all things are going to plan.
I felt alot weaker this time and the E-Coli did'nt help.
Let me know how you are doing Sylvia and if you need any advice then you only need to ask.
Take care…Keith.
Hi John,this is a problem I also have and have the bruises to prove it.
I had my second sct last month and was having blood tests every day while in hospital and my veins just about packed up altogether.
When I had my first transplant it was through a hickman line but this time the Melphalan was infused through a vein in my hand and some of it leaked out and burnt the tissue just below the surface of the skin.
It still feels tender and I am left with scarred tissue which looks like a lump on my wrist which I've been told will be remain, although the tenderness will go in time.
Still a small price to pay in the scheme of things.
Take care and I hope things improve in time.
Keith.
Hi Jet,I've only just read your post and the excellent advice you've had.
I go in for my 2nd SCT on 2nd Aug same date as yourself.
It's true that everyone reacts different to the drugs and recovery times do vary.
I had my first one in May 2008 which lasted 2yrs 4mths before I relapsed last year and then had 8 cycles of Velcade which started Jan 2011 to prepare me for the 2nd transplant.
I went home the same day but was back in hospital after a week and spent a further week in an isolation ward.
I took lots of antibiotics for infections and needed blood and platelet transfusions.
When I came out I felt very weak and needed 2-3 months before I started to feel more like myself.
It's a slow process which has to take it's time but you will come through it and feel much better.
The end result is more than worth what we have to endure to get there.
Best of luck Jet and don't forget to suck the ice-cubes for 30mins before and for 30mins after the Melphalan to prevent those horrible ulcers.
Keith.
Hi Min,I had exactly the same experience after my first SCT.
I was constantly feeling bloated as if I was full of air and it lasted nearly 2 weeks after the SCT.
I could'nt eat or drink a thing and had to be on a drip to prevent becoming dehydrated.
It was a terrible feeling which was caused by the Melphalan but it did pass at which point I started to eat and drink normally and feel much better.
I will no doubt have to go through it all again on 2nd Aug but at least I'm prepared and ready for it.
I hope Peter starts feeling better soon.
Take care both of you…Keith.
Best of luck with the sct Debs mine is on 2nd Aug.
I've been eating for England since Jan and put on a stone which is'nt too bad considering.
It's all because of the Dex although I've been off the meds for a month now so things are starting to settle down.
I know you might not feel like reading posts for a while but do get well soon Debs and I look forward to exchanging stories with you once we both start feeling normal again.
You'll have a start on me so again I hope all goes well and you get out of hospital as soon as possible.
Take care….Keith.
Hi Sarah,sorry to hear Gordon's PP's are rising and therefore his 2nd sct has failed.
I hope that the new drugs do the trick and achieve a long remission.
I have not been feeling too good since I finished the last cycle of Velcade 2 weeks ago and I go for a 2nd sct on 2nd Aug.
It's been 3 years since my original diagnosis and I'm just sick of the whole thing now.
Hospital visits having needles stuck into you all the time does get me down at times but then again there's always someone worse off.
Hope things turn out better for you both and you give this disease a good hard kicking.
Best wishes Sarah…Keith.
Hi Roz I've just read your post about me and I'm really touched by it.
You are such a lovely person to ask after me in that way.
In future I will keep in touch as I don't want you fretting LOL.
THB I did'nt have alot to report and I was'nt feeling too good so did not log on for a while.
Thank's again Roz and don't forget to take care of yourself.
Bye for now…Keith.
Thank's guys for your kind thoughts.
Yes Roz I'm still here alive and kicking.
I just want to get this latest episode over and get back to a drug free life once again.
To answer your point Dai I too was quite surprised to complete the full 8 cycles mainly because of the hand and foot spasms that kicked in at the halfway point and were addressed with a small reduction in the dose.
This kept things on track allowing me to continue with the treatment.
I will keep you informed of my progress ongoing.
Stay well everybody…Keith.
Hi Min I've only just picked up on your post and sorry to hear how Peter is suffering at the moment.
One of the things I'm noticing is the way this horrible disease seems to wear us all down patients and carers alike.
I won't go into all the details of my own situation AGAIN as it's the same old trampled ground but the whole thing does get to me from time to time.
I'm due another sct sometime around August after I've finished the Velcade which thankfully has managed to reduce the PP's from 14 to 3 at the last count.
I have little or no energy and just wish I could get back to where I was 18mths ago,not perfect by any means but better than I am at the moment.
But enough about me as Your lad is having a much rougher time of it.
I think it's important that we sound off every now and again just to get it off our chests and into the open.
We all know the score but we have to keep on fighting,and by doing so we will beat it in the end.
Lookafter yourselves and I do hope things start to improve very soon.
Keith.
Dear Susan,I've only just read of your sad loss and my heart goes out to you and your family.
The last time I saw Kevin was at the "Peer Group Network" meeting in London last year when as usual he was very upbeat and positive.
He was a great guy and I always enjoyed talking to both of you.
God Bless and remember we are all here for you at this sad time.
Kevin left a positive legacy to all of us and will never be forgotten.
Keith.
I'm very sorry to hear of your sad loss Tina.
Words can never be enough in these sad times but the memories you have after 34yrs will give you comfort and help you get through it all I'm sure.
Best of luck for the future with many years of good health and happiness.
Keith.
I hope the Velcade has got you off to a positive start Dai?
I completed my 6th cycle of 8 today(Fri) and go to the Freeman hospital next Thurs to discuss a possible 2nd SCT.
Velcade has knocked the PP's from 14 when I relapsed down to 3.65 todate.
I've covered some of the more acute side effects in previous posts but all in all I think I've tolerated the treatment fairly well.
I've not had any major problems with PN but have had spasms mainly in my right hand making my fingures stick together and not a pleasant experience.
The Dex has also kept me in hyper mode,in particular during this recent cycle giving me restless legs syndrome and unable to relax.
After my 4th cycle the Velcade dose was reduced from 2.6 to 2.0 to combat the spasms and during my 7th the withdrawral of Dex will be more graduated in-order to level out the comedown during the 10,day rest period.
This hopefully will allow me to relax and be my own self.
Being uptight and on edge most of the time is the opposite to my persona and I much prefer to have the real me back as would all my family and friends I'm sure,that's if I still have any? LOL.
Best of luck with your treatment Dai and if your side effects are no worse than mine then you won't go far wrong.
Take care and keep us all posted with your progress.
Keith.
David your post hit me real hard!!!
I know what you mean about getting things in order but please don't think about dropping anchor yet,there's plenty more left in your tank I'm sure:-) I myself get waves of feeling this way but the problem is there's still so much that I want to do in this life that I'm in no hurry to go to the next,that's supposing there is one.
I certainly don't look too far ahead but I'm in no way dropping all of my plans because of this horrible illness and nor do I want to hear you thinking of doing so.
You are one of the true inspirations on this site David and I'm telling you wether you like it or not…You have a long,long,long time to go and I am determined to keep going with you.
Take care mate…Keith.
Hi Min,sorry about the delayed response but have been busy over the last 3,weeks.
I will be having sct at the Freeman and will find out more when I go on the 19th May.
It's a 86 mile round trip which is a bit of a bind but it has to be done.
Hope you are both doing well and I'll let you know what's happening after my visit to the hospital next month.
Keith.
Hello Eve,Dehydration and fever-like symtoms is how I feel also.
Usually the day of treatment as well as the days in between although there are different degrees of how bad it can be.
I get very tired during each cycle with little respite before it all starts over again.
You should never fight against the fatigue as it only makes it worse.
Best thing to do is rest for a while until it passes over which eventually will happen.
I found out along time ago that you must recognise your limitations with this disease and live by them.
Drinking plenty of fluids is a must and if the blood readings are abnormal then the Hospital should be able to prescribe something to help.
Sorry I can't be of more help Eve but sometimes you just have to ride it out.
If the treatment is having the desired result then the effort won't be for nothing.
Keith.
