Hi Alan
No problem,was aware of time lapse ,you are about 9 to 10 hours in front ,so quick reply,but I see Cinzia has replied anyway,sorry for thinking you were a he Cinzia:-P
You might be a long way away,but the world is getting smaller!!
I know of someone who has Amyloidosis,and he has problems ,because of lack of people with it,only 600 a year here,plus the only hospital that deals with it is the Royal Free hospital in London,but I believe the treatment is more or less the same for people with Myeloma.
Good luck I hope we here from you again. Eve
Hi Young Tom
Well lets face it,there are morons every were Tom,you were not quick enough with a reply,yes you should have said,and given him some facts on the chances of him surviving a SCT,lying of course.:-P he would have been running for the nearest loo.!!!
You are young and fit,and you are going to sail through this,and with a bit of luck become the old Tom on here,and the old Tom will become ancient Tom.,get that bag packed,will not be long.Eve.
I have noticed when we go to Kings,the place seems to have a lot of prisoners and warders about,even seen cops with guns in there,I think it is one of the main hospitals for any incidents going on in London..
Hi Alan
If you go to the first person on this thread,Name is Cinzia,click on the black spot were a picture usually is,his details come up,and you can send a private E mail to him,via Myeloma.|He lives in Australia and might be able to help you.
I hope this is useful.apart from that welcome to the site,i do know there are people on here with Amyloids and Myeloma,so you might find this site useful.
I am surprised the search engine cannot turn up his name at Alfred
Good Luck Eve
Hi Dai
I was asking you on another post how you were,plus I got a bit mixed up about your meds,so take no notice of it.No you are not dreaming again just me loosing the plot of we're you are on the roller coaster,if that makes sense .!!:-/
You do surprise me sometimes,how an earth have you managed without a wheelchair!!!!,Slims had one more or less from the start,I am glad to say at the moment it's gathering dust,but at times he could not have done without it,but he did go into it feebly kicking and screaming,but when you have to choose indoors or out doors there is no contest,!:-)
Slim had lots of dreams in ITU,my own thought was to much medication,but a couple of weeks ago,he kept waking me up,he really believed he had elbowed me in the eye and knocked me out,hence the 5 times shaking to wake me up,this is when he was not on treatment so I cannot blame the drugs!!!. He would accept I was ok then go straight back into dream and to him it was very real. He got so worried,we got up and had tea,started the day early.
My own thoughts on this dreaming,is you cannot be bombarded someone with so much Chemo without it taking its toll,physical and Mentally .its good that you feel able to mention it,without feeling you are loosing the plot, We have come to the stage of seeing the funny side of Slims dreams,but one or two have been nightmares.:-/
Dai I cannot get over how quickly you are in and out with Velcade,Slims use to be an all day job, I think Helen is having problems with her hospital with the time it takes with Velcade.
How can one hospital be efficient and another be so inefficient !!!!!
As for your bloods and general condition,you must be over the moon,and what can one say about the Dex, Slim leaves a lot to be desired on the Dex, even when I remind him its the DEX talking. Love Eve
Hi Maureen and Dai
The problem is we're the paralysis starts,plus he has to build up top muscle ,as you know Dai with Myeloma muscle becomes none existence,plus you have to look at the practical side,of number 1 and 2. Maureen does not mention this.
Once Ian goes home,you have added complications ,practical,physical and mental well being,all this should be being dealt with in a good hospital ,so he is able to adapt once he is home,I can understand Maureen's frustration,he is not in a hospital that is addressing his whole needs,
It's time to question the consultant in charge of all these things. Love Eve
Hi Tom
Well I must admit,if you had gone on Deal or No Deal,I would have watched it!!! There ratings would have gone up in the millions,its there loss Tom.
On another level I use to watch the show once upon a time,but not now,if I told you why,they would ban me from this site!!
Never mind Tom we love you. Eve
Hi Wendy
My own personal thought was Slim should go on the MUCK 5. Trials,if you look at is history of treatment, thalidomide increased the Myeloma,Velcade considered failed drug, SCT failed,finding it very hard to accept Rividimid as the best option for Slim.
Has been ruled out as no way of monitoring it.compassionate grounds will not be explored until he try,s Rividimid ,so no choice no options, Slim is not fit enough to make the 86 mile journey on a regular bases to Kings in London,plus again E Kent work closely with Kings.
The consultant made it very clear,compassionate grounds will not be explored until he try,s Rividimid ,at least he was straight and honest about it.Slims bloods are showing IgG and IgM. Bars ,the same as Helen's have asked and been told its Myeloma and not another blood disorder,but I think this also adds complications to the mix.
I might live in the lovely garden of England,but its amenities have a lot to answer for. Love Eve
Hi Dai and Tom
It's lovely to hear from you both,
Tom my spelling is bad and my grammar is none existent,between the agency nurse and me Rividimid was pronounced,in 10 different ways,!!:-P bit like your vodick, or vodka when you have had a few. :-S
Well Slim had no temperature but did he sweat,if I had to blame anything I thought at the time the Zometa was not flushed through with saline enough, usually 2 1/2 to 3 bags used,have to see,but for the last 4 visits he has had agency staff.Must make a note of that. !!! The poor women ! Took one look at Slims veins,her face said defeated before the needle went in, have to start using hot water bottles again. How are your arms Dai?.
Slim is not he easiest person on the dreaded Dex ,he had a slow build up of 10 m for 5 days,and he is only on 20m during this cycle,but that also applies to the Rividimid 1. 25m tablet every other day,I am assuming it will increase in the next cycle.
Dai have you been having a rest from us!!!, I understand as Slim starts down the same route,it does make you feel if you are joining a different roller coaster!!:-0
How are you getting on with the Rividimid ???
So nice to hear from you both.Love Eve
Hi Jo
Not feasible London,86 miles either way,the question begs, Why should we,surely they should get there departments in the hospital on a good operational level.
I have a bad habit of watching,there I am sitting waiting for Slim to be hitched up to the saline ,cannot say treatment has not started,then we wait and wait and wait,then the nurse goes off to get the Zormeta,I have heard they send a batch a time,and have to wait until batch is finished before procuring more,also told its pharmacy,but you do not expect to g o in for a 3 o clock appointment ,which should take around 30minutes for Zormeta then 15 min for introduction to Rividimid plus tablets,and be walking out of the door at 5.45pm
I think I have made my feelings very clear,you do get to a level were it becomes unacceptable,if this is the first cycle,it will either improve or spiral down to an unacceptable level,being deaf in this situation is an asset .watch make notes,timings are so important,saline drip pinging away with Slim pinging in tune with it for over 20 minutes,I actually felt sorry for the agency nurse,Slim and his Dex is not the best combination.
How are things with you Jo is it once a week or twice for Velcade,you must be near the end of the course,how are things going,with being in a London hospital I suppose bloods and Velcade are coordinated ,how long does it take????
Let us know how you get on Jo.Love Eve
Hi Jean
Grumpy sounds like the Dex is Mike on 20 or 40 m,when you stop and think about it,40 for 4days at a time is a lot of Dex. Slim seemed much better on Dex body wise but hated going to hospital twice for bloods then twice for Velcade,so glad when the whole lot finished,but I believe not every hospital is like the one we are experienceing,I think Dai had the shortest stay for bloods and Velcade which was 1. 1/2 hours tops.
Lets hope it will not last to long,and when Mike starts getting grumpy remind him of the Dexitude word, but he will insist he is right anyway.,
Slims on Rividimid ,so it's once a month bloods on Friday,Zometa and Rividimid on Monday once a month. Eve
Hi Christine
This is were you hit a number of things, one post code lottery,it is only in London at the moment:-( Two is NICE set the treatments which are CDT CDV and CDR the consultants are being put in a position to follow these three procedures,unless on trials.Only when these treatments have been tried can they proceed with other combinations.
If you look at my earlier post Questions are being asked in parliament about consultants leaving themselves open to having legal action taken against them unless they follow NICE guidelines.
Slim finds himself in the same postcode lottery,so CDR has to be tried before any other treatment.
He will also not be eligible for trials as the only way to measure the Myeloma is BMB it has not shown a true reading in blood or urine from the beginning .
Christine you do need,to take things slowly as consultants,look at paper work then give an opinion,it pays to do you homework,write your questions out,let him answer,go back and check your facts,then make an informed choice what you believe.Will it help to change consultant?????,
The jury is out on that one???
I am happy that hubby is finding life a bit easier.Love Eve
Hi Maureen
Still cannot get over Ian being in hospital for 8 months,you are going to have to ask to see consultant,see why he is not progressing in his movements,I do know of someone who had a hip operation after SCT and it never healed over.:-( If its only one bed sore,how come it has not healed plus there are no other bed sores, it might help if you get on the phone to Ellen.
You must be tired out,not just with the worry,but also with the way things are progressing,I want be daft and tell you,you must rest,because it does not exist at this point and time for you.
Ask the sister to make an appointment with the consultant who is looking after Ian,and find out why no progress…….:-S
Lightchains on the rise,you would think we are on a bit of a roller coaster anyway,without them telling you one minute will not need treatment for a few years then,next minute,here you go again.
They might decide on different treatment if its Velcade it is easier on the body.
Good luck Maureen,you will find after a period of time,you take in the news,and it does not knock you for six,its just another problem to add to the equation ,it just makes you angry that they do not include you on the list of need to know people. Love Eve
Hi David
To be fair to the department,a lot is because of pharmacy ,!!!!,the nurses have a hard time,when you start relying on agency nurses to support staff you will get good and bad ones.
The Zometa took over 1 hour to come up to the ward !! They had the bloods from last Wednesday,I do not know the shelf life of Zometa but its no excuse for Pharmacy,its the same old,nurses having to go and get drugs wasting there valuable time.
I do not think the nurse realised she would be doing the introduction to Rividimid and in theory she should not have done it,not much different from thalidomide ,except less tablets,dose age seems strange 25m every. Other day I take it that it low dose for first month!!!.
I did send in a complaint after Velcade,the main question was non Co Operation between departments,I had a reply,but the question was not addressed.
This lovely new black notebook,has times dates and all important info in,it lacked names,but I will make sure in future I get names thank you for the tip David.
Slim has a very unusual surname,so it could go against us or for us,lethargy concerning staff is understandable ,given the unco operation of different departments,plus wasting time having to collect drugs.Eve
Hi Helen
I have just been looking at your reply to Wendy,and you mentioned something that has also come up in the bloods,you have at least got an explanation,I just get told not to worry although I have asked directly the question of another disease !!
Slims bloods are now showing IgG plus IgM bars,how much or many I do not know ,my reading on it is another blood cancer walderstomes, not worried so much about it,you get to the point,what the heck,can you throw any more at us,but I would have liked Slims consultant to have explained a little about it rather than tell us not to worry!!
I would be interested on your opinion as I have done the research,asked about it from the professionals, I have not mentioned it on here before as in my opinion,its a new path!!? I think the IgG and IgM has only taken place since the SCT meaning to me ,it's another blood cancer in the making,but when you get told no its Myeloma and do not worry,we're do you go. Eve
Hi Maureen
Sorry to say but institutionalised seems the order for Ian!!!
He has to go to the best place,to help get him on his feet,less visits !!!! But the possibility of not using a wheelchair,to me there is no contest,deep breath, he has to fight,unless the powers that be,have decided no contest.
I can only tell you (if it was me) I would be fighting,the first 6 months are so important,have you asked the important question,
Get him in a place were he can move forward it is important ,Eve
