Hi John
The answer normally is no.
Does depend on your back,some times you need treatment,and if this is the case they treat the back first,because that's the most important,if they consider you do not need further treatment on your back,you sometimes start a few days later after signing forms,high dose of steroids first,then a big bag of drugs,that is what happens with the mx1 trials.
Chemo gets rid of any tumours or Plasmactoma s but if you cannot stand the pain sometimes they send you for radiotherapy ,does depend on your body,
Everyone is different I can only give you an example of my husband,he had cracked vertebras plus tumour,but no spinal compression ,also lesions on shoulders and skull,whole spine and rib cage effected,taken in with AKF plus hypocalcaemia.,He started treatment the following week after treatment in hospital,
Everyone just wants to get on with treatment at first,but pace yourself,learn all you can about,Myeloma,ring Ellen or Maggie on the free line above,they can help,send you books explain things to you in detail,it all seems so over powering at first but you will get use to it all in time,keep asking questions and you will learn a lot,people on here will help you.
We have been in this Myeloma Bubble for 2 3/4 years,some people get lots of remission and some people do not.!!!!
You need to make a list of questions to ask???
What type of myeloma do you have!
How long do they think you have had it!
Is it aggressive !!! ( that's if you want to know )
Knowledge will help you make decision about your condition
Welcome to the roller coaster .Eve
Hi john
Welcome!! Straight to the point,yes,
You will either get CDT or CDR , good luck Eve
Hi Helen and San
Well things are a lot better,they seem to have stopped the infection,will know today as it's hospital for bloods! But Slim seems a lot better himself although not sleeping,plus one leg retaining fluid,had some nice weather so was able to take him out walking the dog,with me pushing chair.
The dog came home on Wednesday,he enjoys his holidays with my daughters dog,but cannot do the long walks that she does,I think the dog curtailed Ruth's activities as she has taken up running as well.:-/
Helen the Velcade been hard for you,I imagine you will be glad to see the end of it?,as to work,what ever floats you boat and keeps you going must be a good thing,is all that wool still behind the sofa???,or did the treatment effect your hands as well,Slim gets cramp in his hands,and his grip has no strength any more. How is your cat? Still going?
🙂
San how is your mum doing on the Revilimid ,what dose is she on,Slim takes 25m every other day,so I take this is half dose,I do not think he would have managed taking Revilimid every day,as it knocks the bloods down,fatigue has been the worst thing,he has been off it for 2 weeks now and the improvement is good,but we do not know if it has worked,and he will be starting his 6th cycle on Monday,if bloods are ok
Well daylight has come time to walk the dog, Love Eve
Hi Jean
Slims phosphate plus potassium were both low,I think it's a combined thing,you could ring Ellen to find out!!!,do not understand the number .58 but looking at Slims results they all have little stars by them and at the bottom says abnormal!!!
Try not to worry to much,a diet of bananas and apricots each day will help,they only put you on a potassium drip if in patient,Slim has been having Zometa all this time so I cannot see were that fits in?????
Slim is getting use to the potassium tablets,he uses a lot of water,and let's the fizz settle then drinks it very slowly ,better on a full stomach.he goes to the hospital tomorrow so hope it's picked up,will start 6 cycle of CDR if bloods ok,plus Zometa as usual. Love Eve
The hotel is on the Mac Millan site,I believe there is a nurse manager there!!!
It looks good and reasonable priced,thanks for info on food,it's nice to hear from someone who,s been there.Eve
Hi Jean
Slim has had a low potassium for a few months,plus sepsis twice,so I am connecting it to him not being well,although the last infection was unknown,but 60 percent are not known!!!!
Slims potassium levels have been as low as 2.3. They should be at least 3.5 ,the tablets they have to have are not nice,I tried a sip and it burns the throat and upsets the stomach ,no doctor has been able to explain why his potassium is low as his diet is rich in potassium ,plus he now has extra potassium from the health food shop,it only relates to 20 percent of daily intake but it's better than nothing,bananas apricots,salmon,greens,all good.
Watch out for heart palpitations,with low potassium,very important,how are the rest of Franks bloods ????, Love Eve
Hi Sarah
Once you come to terms with the fact that Henry will never be the same after Myeloma,it will get easier,not many make it back to number 1 position again ,Tom is one of the people who has,but it still taken years plus,he says himself about the tiredness,so coming to terms with this is important.
Henry is in remission,so lock the thoughts of Myeloma away and enjoy today,because it will come back.i have never had counselling , I find some things very hard,summer has come and gone,and except for one friend,the rest have not bothered,but once I accepted the situation ,I have felt at peace with our situation,we have the immediate family,and that's it really.
I do pop a little white pill,mainly to keep my emotions in control,I either cry or get angry,and it does not achieve anything,a friend who I have not seen for months,said she would give me a ring and come round for coffee,yea!! And pigs might fly!!!!normally I would let rip,but why bother,are people like that worthy of are thoughts,by the way I have known her for 35 years,and helped her a lot!!!!,
So Sarah,you need to accept life is different,and it will give you an inner peace,and make things more acceptable .,I have found since I started this post,more acceptance of our situation.Love Eve
Hi Babs
Nice to see you arrived home safely ,wonderful photo,wishing you well,worth a few bone grumbles to be in remission, and free of the drugs.
Wishing you well Eve
Hi Lynne
It is hard but you are now on the 4th Cycle,CDR.Slims just had to stop in the middle of cycle 5 but if his bloods are ok,he will start cycle 6 next week,the fatigue is the worst try not to fight it,just go to bed what ever time,the not sleeping is part and parcel of treatment,just try to go with the flow,but watch out for your bloods,this treatment does have an effect on bloods. Keep an eye on your blood pressure,as Dex mask infections low blood pressure and high pulse rate ,are not good.
Slims just out of hospital again,but this time feeling a lot better,so may be they have managed to get control of the infection,plus they have given him lots of platelets and he is having a course of GSFS injections to boost his white cells
Hang in there Lynne,I am sure your daughter would rather see her mum getting better than a birthday party,you can make up for it another time when you are less tired.
Keep going Lynne you will get there.Eve
Hi young Tom
I think after a SCT you do worry about anything that hurts,or if feeling ill,I relate it to having to be your own expert on your condition,in time you will get use to it.
As for your bones Tom,the bones get very soft over time,Zometa works well at the beginning ,but as time goes on does not have the same effect,Slim is still on Zometa after 2 3/4 years,
You are getting there Tom,I hope you have lots of nice things in the pipe line to enjoy,make the most of today.Eve
Hi Helen
First how are you??,you must be on your fourth or fifth cycle of Velcade!!!,I know the Dex was playing you up,did you have the dose reduced or just gritted your teeth,and carried on regardless !!!,you should be showing some results by now,I hope the Velcade has done its job,what is on the agenda for you!!!.
I would do as many things as you can,we are just sorry we did not do more,this Summer I had so many plans,none were fulfilled ,every time Slim had a week off,his body let him down,at the moment he cannot adventure out,so doing my best to bring the outside world to him,it's his birthday soon,so arrangeing for family to come.
Slim got home yesterday,this is his third admission in a short space of time,two with sepsis,one for platelets as had to come from London,so done over night..
We have been told his BMB will take 2 weeks as bone and fluid taken,I know they must have some results from the slides,but they denied it,!!!!!!must think I was born yesterday,did not push as Slim was there!!,going to clinic to have blood test,as platelets and nuets not holding if his bloods are ok on Friday will start his 6 cycle of Revilimid ,his consultant is not about and clinic has been cancelled on Friday,!!!! So we have to wait until the following Friday to see him!!!,
So Slim has to go on Revilimid again,although we do not know if it is working!!! Plus we're is his consultant!!!!, I know he does not play golf!!!!
The dog has gone on holiday to one of my daughters,I expect him to come back in nappies,as his routine has been disrupted,he needs to walk these days to get his motions working, lol. I have also got a new cleaner who is excellent,so this helps on the practical side,have not found the time to collect new car,or order mobility scooter,went mad and bought Christmas decorations,so have decided to put them up and bring a little Christmas cheer into the home,.Love Eve
Hi Lolly
Square boxes and round pegs!!!!!,for example how far can he walk without pain???? Answer. Cannot,!!!
You should answer what he is like on a bad day,for example,the day he comes out of Kings!!!! ,appeal explain that he is having a SCT and needs assistance,plus blue badge as cannot walk very far 10 metres.!!! Eve .
Hi Ann
No doctor can predict when it will come back ,average is 18 months upwards,some people are still going years and years later,when we came out of clinic after BMB plus 100 days with 0.0 myeloma cells in Bone marrow,we were told to look at 7 years,plus ,did I believe her,the answers no,read enough about the disease ,and you will have your own answer.
For the record Slim is one of the unfortunate ones,it came back within 6 months,everyone is different!!!!
It's a strange place to be after SCT,there is nothing to fight!!! You are in remission,go out and enjoy every day,why worry about tomorrow and spoil today,or as Andy says every day is a gift. Enjoy Eve
Hi Neil
As you had CDR first time round,it should make your decision easier,people who had CDT,and then are offered Revilimid as maintenance ,will not be able to have it as a treatment,so this will not apply to you.
You will still have to go to clinic for Zometa,so again this will not be an added journey,Revilimid has effected Slims body,but he is on third line treatment and like Phil,it starts progressing as soon as treatment stops or as in the case of CDT does not work at all.we are waiting on BMB results to see if CDR is working.
It is a hard decision given your wife's illness,but the fitter you stay,the better you can care for your wife,as you say you could start it,and if you have problems come off it,or your consultant could remove you from the trials if there is a problem,it will not go against you for any future trials,you just have to be eligible for there criteria .
Were,s that crystal ball when we need it.Eve
Thank you Rosie
I do not think carers have a choice,you just do the best you can,I can imagin how you must have your hands full,but it must help to take your mind off thing,I was one of seven,the youngest,so I know what it's like with a houseful ,but hubby must feel it not being able to do the things he considers his jobs:-(
Slim has been on CDR for 5 cycles,after being in and out of hospital every day since Saturday,he was admitted as in patient on Wednesday,his bloods are very low,and he has an infection,they cannot get his blood pressure to rise,had CAT scan ,which was clear,and today a BMB,So we might find out what is going on.
His memory is poor,so although he cannot remember the bad parts,when he has things like Rigor it's very scary for him,
At the moment this roller coaster is only going in the downward direction,but hope to have a few highs if he gets over this bad time.
Rosie I hope this site has given you hope,do not give hope up,no matter how bad things get,Slim has been in this position before,so we know it's possible to get over this hurdle.Love Eve
