Hi Tina
As Mavis says there are lots of trials and treatments.
my husband is on MX1 trial,but trial or no trial some were along the treatment you will get the offer of SCT if you are fit,but that is usually way down the line.
You need to find out all the information about the trial offered and if you need some answers from the patient or carers point of view,then I am sure you will find people on this site will answer your points. Eve
Hi Kerry
Welcome to this site,i will not even try to tell you not to worry,but advise you to learn all you can and things will not seem so scary,ask for booklets at the hospital or phone Ellen who will send you some.
Blood clots not very nice but once treated and on going treatment for them during Chemo solves the problem.they can be part of any illness but more so with this Cancer.make sure he tells the doctors how much pain he is in,the rib fractures are very painful ,They will be doing lots of scans MRI CAT scans,plus full body exray,s because he is an in patient,he will have them a lot quicker,which always helps because of his discomfort.
Hope this is some help.treat it as a big learning curve,and it will not be long before it seems like normality in stead of scary.Eve
Hi Peter
You do not mention Diana,s age or back ground of MM,and this is important because the symptoms could be connected to her general health,I think when you come off Chemo you think you will feel better,and it comes as a surprise to find you have all these symptoms,you start thinking,are you in remission.
CTD the dreaded DEX also gives you a lot of energy and a good appetite,My husband went straight from CDT to Velcade,but getting remission,his body did react to coming of Chemo,specially the DEX he came off Chemo before Christmas,sleeping more,feeling sick,body clock mixed up.
After blood test confirming he was ok.We thought the only thing it could be was trying to reduce pain killers,this was making him confused,and because he was off Chemo,and confused he had forgotten to take the rest of his medication,once we got to grips with it,he has had no problems except general aching bones,still has shivers plus twitch legs.
Slim has a light anti depression at night,and from being awake all night he now has a good nights sleep,he had heavy sweating,but that,s now gone plus,he now enjoys the day more.
We go to Kings on Friday,for 1st visit,for SCT.
Getting remission is a bit of an anti climax,you wait to hear the magic word,only to have to come to terms with another learning curve.I would say if your worried go and see your own doctor.Eve
Hi David
I think it,s great,it does get rid of the elephant too,must ask you??? is that a garden with a lovely lake at the bottom?????
Slim and I talk very openly about his illness,with grandchildren around,so if they have any questions,it can be talked about as a family.
Lets see some more pictures as you go on,must say you look if your many years off using it,better treat it for wood worm,you might live untill you 100.Eve
Hi Craig
Well I am shocked,sorry you have to get people on board and start ruffling a few feathers,if you cannot get help from macmillan nurses go to local papers specially now as the lords have just thrown out a bill concerning disabled people.
No one gets Myeloma over night,you have to get your doctor on board,to put it bluntly this is out rages,I know it is extra work but fight them all the way, Myeloma does not go away,I do not know were you live,but you need help big time.
my heating bill has more than doubled ,so I know what what you mean.Eve
Hi Craig and Etta
Sounds if you have been through the mill a bit,I can only tell you Slim was in this position,in may last year,in a wheelchair,at this present moment he is out walking the dog.!!!!!
As you say with food a little and often,as much as you can Slim has now put on 1st 8ib,after loosing 4 st.so getting there.I found buying small ready made puddings and custards a help,also lots of things to nibble on.not the ideal food but as long as he was eating.:-)
I know it is harder in winter,but getting out made a big difference,I also got sky for Slim so he could record nature programs,and sport to watch in the middle of the night when not sleeping,as his ability to do crosswords and read became non existant
I hope you are claiming all money,s due,as it does make a difference to your quality of life,Just remember Craig it will also wear you down,it is hard work as a carer I know how much it effects me.Eve
PS> One thing I forget to mention,Slim was put straight back on Chemo after leaving hospital,we both felt it was to soon,but took our consultants advice,on a reduced dose of steroids,It was much better than we thought,the reason he was so ill,was because of pneumonia and blood clots,and the steroids masked the illness.After 6 cycles of CTD,he went on Velcade again 6 Cycles and this took him into remission. Eve
Hi Everyone
Well the garden of England has become a white garden over night.
Woke up and the ground is white and the sky dark grey plenty more on the way.Hard to say how much has fallen as its drifted and looks lots in some places.Eve
Hi James
Welcome to the site.
It,s my husband with Myeloma,he is in remission after ctd then vcd,and going to Kings this month to see if sct is possible,because he is on Myeloma X1 trials,he will be randomised either for treatment or no treatment.
At the moment we do not think SCT will be the solution,as his lungs were damaged with pneumonia and lots of blood clots,after the computer makes decision,he can come off the trials any time he likes.so its a wait and see game!!!!
There are people on here who take a maintenance drug,to me it sounds like a good idea,I cannot remember the USA link,but its worth looking at as they are way ahead of UK for treatment.Eve
Hi Bridget
Well it is the 4th and snow warnings are out,very cold with wind,but no snow,it would not surprise me,if this little corner misses it. Eve
HI jet
You have hit the 3 F???,see if you can work it out with out my help????
before you hit 50 the 3 F was something different.
Eve
Thank you all for replying
Slim has finished Velcade,but the complaint went in before we new he had remission,but that does not matter I am concerned for people who come after us.I wish I could put the hospitals reply on here,but I cannot not,but reading between the lines,it does not pay to go on trials,you will spend more time in the hospitals!!!!!! and the pharmacy is a law onto it,s self,and no one is prepared to do anything about it.!!!!!
Jet I am so sorry to hear your news,please do not give into the bad news,Slim after 6 cycles of ctd,his Myeloma went up to 80% in bones,after 6 cycles of Velcade he is in remission,he started the same time as you,diagnosed in January 2011,Velcade blocks plasma cells.so hang in there girl,and show your fighting spirit.:-P
My next letter is waiting to be posted to the hospital,its just a shame the ward is taking all the flack,and they are unable to see it as constructive complaint,with the view of helping the system.
They should try to see it from the patients point of view,I have come to the conclusion,for one letter there must be another 99 who do not put it in writing mainly because the nurses work hard,and then the worry how a complaint will be received.
Thank you every one for your replies,if we can make the system easier for people who come after us,it has been worth it. Love Eve
Hi Marion
The reason I mentioned cc club,is lots of there places have lodges now,so no roughing it.We have a motor home and there sites are good.Follow you own needs,do not worry about your drugs,I am sure any place will help you.
Have a good holiday Eve.
Hi Marion
Just to answer your query ,I use to have a B&B,and have had all sought from guest in my fridge and freezer,most will help you out just ask on booking,if they say no,you would not stay anyway.
What is Aranesp EPO!!!!!!
If you like the Camping,have you thought about,booking through the Camping and Caravan Club,I would look at there web site.Eve
Hi Cinzia from Australia
I found you post in the middle of old post,so people might miss it.If I was you I would post on related illnesses more people will see it,start your own posting:-)
Any way welcome to the site,every one on here will help you all they can,there are people from different countries,so do not feel like an outsider.
I cannot tell you about SCT,as my husband is just approaching this ,we are wondering about alternatives to SCT when we go to London,they will give us all the info.There are people on here who have not had SCT and are doing well,there is new treatment coming up all the time.
Things will get better,try to take one day at a time,and remain positive,its a long roller coaster you are on and you are going to have your low times,but by the sounds of it you are getting to remission on CDT,so its sounds all good news.:-D
Hope this is some help.Eve
Hi Everyone
I know what your talking about Bridget with computers,hated them when I was at work now I could not survive with out one.my daughters use to give me there old ones,bit slow but worked last year got my own lap top,this year I Pad,Slim uses that more because it,s not heavy and good for games.
I am decorating the bedroom at the moment,it is much harder than a couple of years ago,doing one wall at a time,and resting if I do not feel like it,cannot get back into reading,so decided I would decorate instead.:-P sounds daft,but keeps my mind occupied.
Cruise is a good idea,would advice you try singles cruise,as it means if you want to be alone you can or if you want company there is other people in the same boat.
This is always a horrible time of the year, must say the weather down south,is lovely,we are having sunshine most days,makes a big difference.hate the early dark evenings roll on spring.Eve
