Hi Rob
Do not worry. About the tube it is the least of your worries,one would have been fitted later for SCT it actually makes your life a lot easier,on normal treatment they go in to veins every time often they collapse,some like my husband it takes a number of tries,so a centreline sounds much better.
If you are looking at all trials,this site will tell you we're they are,if unsure ring Ellen,you can do other trials as long as you are prepared to travel.Kings is one of the main places for blood cancers.
Hope this info gives you more insight Eve
Hi liz
Now Slims in remission and off treatment,I find I am posting less,but I like to keep up with what is going on also if you have not looked at the site for awhile you do loose track of what is happening to people,plus all these new people coming on,if they felt anything like
I felt when Slim was first diagnosed,they need lots of boosting up,plus they relies that there is life after MM.
When treatment is over,it's another big learning curve,things will never be quiet the same,but looking back ,it's hard to believe ,that we have got this far,the last 2 years have flown.Have to sit down and plan next holiday,it does make you make the most of it,like a second chance.
Sorry to hear Kevs in and out of hospital,what's going on with him.??? Evr
Hi Rob
Just to welcome you to the site and wish you well on your MM journey.
Wi th you being based in London you will have some of the best experts and treatments available ,we are Kent ,but my husband went to Kings for his SCT,also to. Have a choice of trails,my husband did MyelomaX1 trials,CTD randermised,which did not work,so straight on to Velcade had a good response,then SCT.they say this is a very individual disease,so no one knows what works best,but I do think trials are your best option.
Good Luck Eve
Hi Everyone
Well we made it,and when I learn how to put pictures on here,you might see some.
Has taken a fair time to get over the flight home,at the moment Slim is doing better than me,he,s waiting on consultant for the ok,it's a bit of a worry every 2months wondering if its all ok,as Slim is one of these people that it no longer shows in blood or urine,so you worry about every pain,just hoping it gets easier with time.
I returned with lack of movement in my right arm,rather than wait fir physio I a going to a osteopath ,taking its toll on both of us,not use to being so helpless .
So many new people on site and young people as well,I wonder are the doctors getting better at diagnosing ???
Coming up to 2 years since starting treatment,and our lives have changed so much,looking forward to enjoying a few holidays ,it is amazing how quickly you forget about the treatment plus SCT.wishing you all a good 2013 year.Love Eve
Hi Maureen
My husband did 6 cycles after CTD failed for him,tolerated it very well,went on to SCT and is now in remission .hope every thing goes well with your husband.
Time soon passes,the worst thing was having to go to the hospital bloods in the morning then home and back again twice a week,use to look forward to the week off.Eve
Hi Sue
How are you,??? Just to let you know,we are thinking about you,do not worry if you cannot reply,everyone understands.Love Eve
Hi Tina
Would agree with Tom,you have along way to go,Slim has the same problem,try sucking sweets helps with moisture ,Slim is getting a bit better,but sometimes he goes to speak,and because his mouth is so dry,he does not make sense.Always carries drinks with him no matter were we go.Eve
Hi Jo
How are things going??? The Velcade is not so bad,just all the hospital visits !!!
Hope you are managing to get out and about,and results going in the right direction Love Eve
Hi Lesley
It is very frightening
when you get that final answer,but we felt after months of not knowing what my husband had a sense of at least we know now,although I did burst in to tears at the doctors surgery anger was the next feeling why did the doctor not listen to me when I told him how ill Slim was,it took another doctor in the practice,who listened to what I said,if it had been caught earlier,the bone damage would have been minimal.
You are feeling just like we all felt except your,s on Christmas Eve,you will look back in a fw years and think,has this really happened !!!
As the months pass you will learn a lot,and in time you will be able to help people who come on this site .learn all you can,get info from Ellen,anything you want to ask,come on here,lots of tips and advice,try to take one day at a time,listen to your body,get your financiers soughted,this illness is not cheap,it comes at a price,time off work,hospital appointments,,help with any extras is there,even to a blue badge.
You might think you do not need this at the moment,and I hope you do not,but you will be ill before you get better,but you will get there,it is all do able,lots of people are getting good remission s ,welcome to the journey .Eve
Hi Steve
When are you taking the Dex,should be early in the morning as possible,it did make Slim argumentative,so certain he was right,plus became anxious at my driving luckly he did realise it was the Dex,It gave him a good appetite for a few days,so that was good.
The bad thing about it,is it mask infections,so you have to be careful and watch out for a low blood pressure,even A&E are nor good,not use to patients taking large doses of Dex. Big learning curve for us,wish someone had warned me about it,just one of the blips Slim went through.Eve
Hi Wendy
Nearly missed your post!!! It would be easy to say not to worry,but after enjoying so much freedom from MM,it must be very depressing to think you have to start treatment,lets just hope it's a bit of a blip,if you start preparing yourself for it,it will be like livening on a roller coaster,Slim takes the attitude if you cannot change it,there is no point of worrying about it.
He leaves that to. Me !!!
Sorry about my spelling my excuse is not very good with I Pad plus taking very strong pain relieve for frozen shoulder,think I would have been better with Toms vodka, wishing you well,will be looking for your next post that says it,s just a blip. Love Eve
Hi Daniel
You have come to a good place for information,and you and your dad can be assued people will give you all the help and support they can.
Please get it out of you mind how long,!!! It sounds bad but there is so much treatment these days,as you know it is treatable but alas no cure,it buys time,your dad had a good response first time,no reason why after treatment,he could buy a lot of time.
What you are describing are scells that have joined up to create a plasmatoma or small lump,they treat this with the chemo,but if it is painful or in danger of causing mor damage radiotherapy is used.many people on here have had the same thing plus lots of damage to the bones and go on to remission.
Velcade is having good results and is working for lots of people,but as Eva said,people and thes drugs,have different out comes,if the experts new why,they would be able to find a cure.
Good advice to ask Ellen the nurse,for info,she can send you lots of information,the more you learn and understand the less freighted you will feel,it is a big learning curve and the people on this site,will help in any way they can.
I can only tell you 2years ago my husband started his journey,plasmatoma ,cracked vertebrae s,lesions,lots of bone damage.and a few blips along the way,chemo first line CTD then Velcade,then SCT ,2 years on he has remission,and we have just got back from New Zealand.
He is not ready to push the daisies up,he has a lot he wants to do, I wish you're Dad a good journey.Eve
Hi Keith
I can understand why you are feeling down and the whole thing must be so tiring ,ask you self how you would feel this time of the year without having MM.most people feel a bit washed out,cold weather rain,and with you the added trips to the hospital,
I would try to look on it as just a blip,we all know how even a cold can effect us,without the MM.,you have said yourself when you are feeling great your readings are low,
The doctor is being honest with you,there are other things to try,please try to keep your fighting spirit up,I think it,s such a pity that they do not allow Velcade again,it proved to be a good drug for you.I am keeping my fingers crossed for you.
Keep that fighting spirit up Keith,it will hold you in good stead,attertude often keeps a person going,all the best .Eve
Hi David
You would have been first to put your hand up.David,we all want the same thing,a cure,David Ian sure before your time is done,new trials will be coming along,and I believe passionately this is the way to a cure,saying that it,s Slim who takes the Drugs
My admiration goes out to all myeloma patients,even the ones who decide no treatment ,it takes courage to decide to end your life prematurely .Love Eve
Hi Peter,
Just to wish you good look with SCT,not very nice at the time,but if you achieve extra time it,s well worth it.
A few tips for you,take your own mug in,as hospital vessels not big enough,take old clothiers that can be dumped,I can assure you if you do have any accident s your wife will not want to take your clothes home,physo should visit worth getting one of those little bike machines and doing bait of excise as weight loss is muscle ,you should be allowed out of your room until you hit zero,take full advantage,because once everything hits,it's finding the energy just to stay awake .
Apiece of advice a nurse gave Slim,no point of eating if it makes you sick,cold milk was the order of the day,also I would limit visitors ,you will find even nurses keep away unless they have to do a job.it keeps germs at bay.Eve
