Hi
Looks if Apprehensive was the right mood for me,came away feeling what a waste of time,and lots of conflicting information,when I asked for statics ,information not forth coming,on another point told bone marrow results had not improved,asked % wise damage,did not have that info but file was on desk!!!.Told all the way through everything…[Read more]

Hi Gill so pleased Stephen is feeling better . I am sure he will soon get his appetite back now he is back home with you looking after him Please make sure you look after yourself too though !! Hows the puppy? I hope she has learnt to perform in the right place now!! love Bridget x

To moaning Min
absolutly!!!
xx:-S

Dia

10th of august well I really call that an urgent appointment I think its a docters duty to treat ill people even if it makes them a bit late did they join the profession to care or what!:-/ it makes me so angry, my bother in law has had a scan and they have found a suspicious lump in his stomach that was two weeks ago his first appointment…[Read more]

Hi Ivan

Good luck with your CDT it really worked for me the only other thing I would say is its much easir to take the steriods with a yogurt in the morning and you will need a laxative as thalidomide can cause constipation.
Did you know how the discoverd that thalidomide worked for myeloma, they were treating someone who had…[Read more]

Hi Gill nice to see Stephen has got over this hurdle,it,s a roller coaster ride,all the time,I just wish it would stop for a little while.
Did not see the article you mentioned but don,t you think it is strange how much it has increased in price over 50 years,£2100,cannot see them 50 years ago paying a high price to stop pregnant women feeling…[Read more]

Hi Dai
The problem is all bookings go through,a format you have to be seen with in so many days,the request is a piece of paper marked urgent just like all the other pieces of paper,this is what is happening all over the country.If the test is in high demand,they cannot cope with this demand because of staff shortage.if you were in hospital and…[Read more]

Hi Dai
The main thing Dai is you are having the treatment ,the injections,a scan will show how the leg is doing,so try to have agood weekend,massage does help easy the pain,i spend a lot of time on Slims legs,as it help circulation ,so it is worth a try,complains some times that i am heavy handed!!!.:-P
love Eve

Hi Ivan
I cannot tell you much about alternative treatment,there are lots out there,Took me all my time to get Slim to eat at one stage,drinking water is very important as it helps the kidneys flush through,your taste buds will change from,month to month.Slims always been a wine drinker,cannot stand the stuff now:-)(more for me):-P
My advice is…[Read more]

Hi Ivan
Eve again,your on ctd,remember to take DEX in the morning,and Thalidomide last thing of a night ,but I am sure they warned you about that!!! some people get mood swings on DEX someone coined the phase Dexattude,the wife will get use to it:-P
It will not take long to adjust to everything,a chart is helpful some hospitals supply them or…[Read more]

Hi Ivan
Sorry am late in replying but a warm welcome to this great band of folk, but sorry you had to join 🙁

Good Luck on your treatment I also (in feb 2009) started my treatment CDT and that was starting with about 50 pills a day 🙁 but i done it with the stem cell harvest and the stem cell transplan in december 2009 and her I am back at…[Read more]

Dear Sharon

Just caught up with your post. So sorry you are having such a rotten time with the CTD. Do hope you get an appointment soon and get the help and advice you need.

It's a very hard path you are having to tread so be as kind and forgiving to yourself as you can be, and as others say, make sure you are getting support with the…[Read more]

Hello Ivan

Just caught your post. Sorry about the diagnosis. Do hope you have had a good hospital visit today and felt comfortable with the Consultant.

If they said you should just "wait and see" with regular check ups, don't feel they are fobbing you off. For some folk this is the way ahead and the months without drastic treatment are to…[Read more]

Hi Ivan
Just picked up on your post,welcome to the journey,may i say it is a massive learning curve,try just to take one day at a time:-)
I cannot add much more than has been said except to say,thing will get a lot better,this site will help to give you insight,and advice there are people ahead of you on this journey.
3000 people in uk a year…[Read more]

Hi Ivan sorry you have had to join our merry little band but you will find lots of help and support on here even if it is only to have a rant at myeloma and all it brings with it!! You are wise to take your partner in for your consultation , in the beginning there is so much that will be new to you, I often used to ask my husband what had been…[Read more]

Hello Ivan

so sorry you have had to join this group,you will be in shock and it will take a while to come to terms with it I dont think anyone truly does, as for crying I also have a close family we all did a lot of that.
This site is so valuable for help and information and the Myeloma uk help line is brilliant there is always a professional…[Read more]

Hi Lara welcome to our site there are lots of people on here only too happy to offer you support and we have a range of experiences from patients to carers, those like your dad just starting treatment and people like me who were diagnosed some time ago , 5 years in my case. I havent been on thalidomide myselfbut I know from others that the best…[Read more]

Dear Gina congratulations for your wedding, and you dont need lots of money to make it the best day of your lives — just each other and your families beside you !! I am appalled that those wretched doctors have allowed your lovely , lively mum to become so poorly when they shou;d have started treament ages ago Its no wonder you are angry , I…[Read more]

gina
I can understand your anger this is terrible your mum is entitle to ask for a change of consultant and hospital if this is possible for you I would do it, thinking of you
Regards Jo

Hi Sharon
You should never have got to this position on the trials,my husband is on myeloma X1 trials CTD.When you go in for blood they ask you how you are,you have to tell them the truth,and ask to see your myeloma nurse who should be there when you see consultant ring her up.

Yes you are having a bad time,and trying to look after two kids…[Read more]