Hi Everyone
Nice to see everyone getting in the Christmas spirit,we have already started eating the Christmas goodies,so might have to buy some more
I am still looking for some of the Christmas decorations???,I think Slim has hidden them away!!
He has a weekly visit for bloods,plus if he needs platelets or bloods another visit,a visit for BMB and one to see consultant all before Christmas and it’s 18 days to go before Christmas.
Hope everyone is well enjoy Christmas and welcome the new year the way way you mean it to go on.wishing you all the best Eve
Hi Tom
I can tell you lots of hospitals do not do Pet scans ,Babs told me the reason why is the amount of rays it has to use,this explains why Slims consultant is against Pet scans,he says it will not tell you what is going on in the Bone Marrow,but when you have no firm readings for PP or light chains,it’s a long time to wait between BMB,Slims heading for his eight one.
The consultant asked him did he really not mind BMB???Slims just says if it’s the only way to find out!!!!!
You know the general guide line half that time again,and a lot can be discovered in two years,and some people get more,lots of treatments after Velcade as well,so all good news!!!!
I would have liked Slim to have been given Velcade again,but they still have rules,one it has to have worked and two at least a year between Velcade!!!
I wish so much you were not in this position,just keep running Tom,it’s just nipping at your heels. Love Eve
GOODBY MY CYBER FRIEND .
Hi again Jasper
I think you should find out what Myeloma your mum has,EG my husband has IgG bence jones knapper light chains,also has complications,plus he had a tumour,leisons,and a lot of bones effected. The damage causes the pain,but it is trying to get the Myeloma controlled is the problem,some people have an aggressive form others do not,and some people are high risk,meaning as soon as treatment stops it comes back.some people are non Secretor .
You need information before you even think of SCT,if you ask the right questions,you will get the right answers,please ring Ellen,she can tell you what you need to ask. Eve
Hi Sarah
Reading your posting,I think you do not know how strong you are,just to cope with this disease,and keep the family together,with all this worry,is an achievement in it,s self. So be kind to yourself.
I would say 3 months in to treatment is the worst time,the Chemo kicks in,the weight loss shows,fatigue is awful,so I can see why you feel,things are never going to be the same. I cannot say they will be either.Many people have a good remission,and go on to lead the life they had before,look at are lovely Tom,on wards and upwards!!!! , many do not but I can tell you that you will adjust,every one feels there life has been snatched away.
This will make you a much stronger person,take the attitude if we can get through this,!!!!,My own personal saying which is on my fridge,is why worry about tomorrow and spoil today.
As for your husband,while he is on treatment,he will look ill,the disease and Chemo,are responsible,he may never look the same man as he was,and no one knows what the future holds,we all know exactly how you feel,because we felt the same!!!,and we are here to help you. Eve
Hi Andy
Lovely chocolates and good strong larger!!!!! Just what the doctor ordered,were are you going in Belgium?????
Hi Karen
If it's any help I had a melt down on Monday!!;-) it all so took place when I did not expect it!!!:-( ,just to let you know I am not immune to the fall out of this horrible disease.;-) love Eve
Hi Karen
Blog or book to write your thoughts in!!!,I think once you put pen to paper the anger becomes less,!!! I do know some people who have gone to a councillor,my attitude is if it helps it,s good.
If you think about it you have been fighting this Myeloma for some time,putting up with the treatment then the SCT,then after the hundred days there is nothing else to fight,bingo remission,!!!!
Slim felt the same,but he was unfortunate it was back first 10 percent then30 percent,started his third Chemo.!!!
Your doctor is right,so enjoy every day,today is lovely in the SE of Kent sun shining ,but cold.Love Eve
Hi Jean
Get doctor to prescribe NYSTAN they use it when people have SCT,plus he should use a mouth wash.
Hope this helps.Eve
Hi Jasper
Well I can say you have come to the right place for information,if you go on the net,you will find a lot of information that is well out of date.
The first thing is this disease is very individual ,no one is exactly the same,and no treatment is going to work the same on individuals.
I can say London is one of the best places to be treated,lots of trial plus consultants who specials in Myeloma.
My advice is ring Ellen or Maggi on the free number at the top of this page,and they can send you all the information,plus a list of Consultants who specialise in Myeloma.
As a family,you should slow down,this is a long journey and a big learning curve.
I know how you feel,because every patient and carer has been in your position,lots of people get years of remission,and lots do not. You will learn to cope with Myeloma because you have no choice,learn as much as you can,any doctor will tell you it's treatable but as you said incurable .
It is normal to feel hopeless ,your mum will have a BMB,plus Skelton X-Ray plus MRI. This will tell them percentage in BMB,plus x ray will show damage on large bones,MRI scan will show damage to spine and ribs.All this is normal and will happen once confirmed Myeloma..
Welcome to the roller coaster Jasper,I hope you find this site informative ,plus I hope as people on here help you,you will help other people,tell your mum to take deep breaths,she is not alone,and could find this site very helpful in the future,.Eve
Hi Trish
Slim is in the same position,except he is on CDR,has been off it for six weeks,:-P
It is worrying,you wonder what is going on with the Myeloma?????,it will not take long for Peter to start feeling better as the chemo wears off,my advice is enjoy this break!!!!,it will give his body time to recover from the battering the chemo has done.
Just make sure you keep him free of infection free,you will notice a difference,he will be eating better and his brain will not be a chemo brain,so please try to enjoy this break.
Slim is having a break to let his platelets recover and also to see if there is another reason why they are not responding!!!!
So bloods taken weekly,BMB end of December.
Unlike you we have no way of knowing how Slim is responding with the Myeloma,as it only shows in the Bone Marrow,no PP for us!!!!,it's just a wait and see game,keep him healthy.
Trish just enjoy this break,make the most of it,then it's back on the roller coaster for another ride:-( love Eve
Hi Steve
Just to say welcome to the roller coaster,sounds if you are getting on with the job,but surprised the options you chose early,but I am sure you new why and also new the risk,at 51 is there a chance of a donor transplant !!!!!
Well spill the beans,??? To my husband there is only one commando RM Commando,the rest are just copying lol:-P .
24 years and brain washed I call it!!!! My husband has only 2 things on his bucket list,Dive the Barrier Reef in Australia and Go to Galapagos ,but not to be!!!
We both have the attitude Why worry about tomorrow and spoil today.Good Luck.Eve
Hi Babs
Sorry did not have much time to talk today!!:-S :-/
Slims memory is shot to pieces,still cannot remember meeting you;-)
As I said get in touch if you want any info or tips,in the mean time good luck with you op.Love Eve
Hi Karen and also Mandy
If being a junkie gives you some relief from pain,so be it . It is early days for you both,and you will learn your limitations,you might not get the same life back,but there is no reason why the new life should not give you a lot of pleasure.
One thing we find is we do appreciate things a lot more,and you just cannot go round feeling sorry for yourself ,plus as you say Karen a kick up the bum works wonders. It would have been my grandsons 18 birthday today,we lost him 18 months ago,now that's hard,so had my little weep,given myself a kick,plus a G&T ,and had a drink in memory of lovely Matty.
I hope you both have many many years in remission,I want to hear about all your adventures.Love Eve
Hi Mandy
Slim use to take 2 steps forward and 3 steps back,gradually he learnt to pace himself ,but even now he over does it,and no matter what I say,he pushers himself,so again only you know how much you can do, I think this common after SCT everyone thinks the same. If you had major surgery on your body,they would tell you it takes at least six months to feel ok,well SCT is very much the same,some people are quicker and some people are slower. Plus Myeloma medication brings it's own side effects,again it varies .
When Slim got his remission after the 100 days,we went to France for 2 weeks,then a cruise,plus NZ all within 6 months,the longest we have every had away from a hospital is 6 weeks and that's in a period of 2 3/4 years,at the moment it is at least twice a week,this week it is 3 times,and if they had,had there way it would have been 4 times.
You are in remission,so make the most of it,even if it's just a walk to look at the beautiful autumn colours,enjoy your new found friend the puppy.Eve
Hi Karen and Mandy
Well as you know,Slim and I do not have to worry about what if!!!! Once you come out of remission,on average you have half that remission time again,so in Slims case that means no remission,just a cocktail of drugs unless something is found like a miracle . Slim has joined the same club as Andy Dai David and many more,not giving up but have the knowledge that time is not on there side..
You two are in remission!!!! And long may that continue,I hope you have years and years.yes you have aches and pains,so take anything that gives you a quality of life,so you can enjoy every day,so that's the physical side taken care of.
The mental side needs addressing,you can pop a pill to stop you getting depressed!!,or you can look on the future as a challenge,every day do something,even if it's only a small thing,like phoning a person up who does not get out much,any thing that takes you away from the Myeloma Bubble, Burst the bubble and escape.
Why worry about tomorrow and spoil today is my motto.Eve
