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]

Well it is good news that they feel you are fit enough to go straight to the chase, Ivan

Like you I was put straight on the CDT and had my stem cell transplant in August last year.

I was surprised about them still being allowed to use thalidomide but my consultant explained that one of its properties is that it stops cells from forming.…[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]

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 again, Ivan.
Wishing you all the best for today's appointment!

One thing I have bought that really helps when I go to see various doctors is a small digital voice recorder, no bigger than a memory stick which records everything said and can be downloaded onto a computer or IPod etc for later confirmation of all the words used and plans for…[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]

I am so sorry you have had to join our group of MM warriors, Ivan.

Welcome to the best place on the www to find accurate information and interact with others with similar problems.

Hopefully as you have been diagnosed before you have suffered any bone problems you will be treated in time to stop any degeneration such as for some of us was…[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]

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]

Hi Dai

It sounds as if quality of life is slightly better for you. Isn't it difficult sometimes to know what is MM and what is down to other factors. Worse when you are older, I can tell you – because then you get "of course, at your age…!"

Do hope reduced level of Velcade does some good and you are able to finish the Course.

Enjoy…[Read more]

Hi Dai and Min
This is the same with Slim.Pain in heel then calf.I took him straight to Ashford hos.it was Sunday,new DVT clinic had opened.A&E.had stupid nurse telling me there was no clinic,made her go and check,agreed with me but kept us waiting 4 hours by then DVT clinic closed.started treatment injections had to come back next day for…[Read more]

Hi To You All
I am awake at this stupid hour,so I thought I would pop in,have been awake for awhile so gave in ,up made a cup of tea and here I am,wish i could get in to a good book,but my prolific reading days went out the window when mm started,Slims happy about that,as he could not get a word out of me when my head was stuck in a…[Read more]

Hi Susannah I just want to add my vote for PICC lines they are great!! Quick to insert and as Tina has said painless Also they are completely covered so less risk of infection than with a Hickman. I have had 3 so far and none have given me any problems , so much easier than searching for veins in obscure places I hope the treatment goes well love…[Read more]

Hi Min and Eve well still got the legs of a bull elephant !! I do drink lots and try and be as active as possible and I am remembering to elevate my legs when I sit down too .My Macmillan nurse did say that Ferusamide wasnt that good as a diuretic as it causes kidney problems at higher doses , she also said if the problem continued they would…[Read more]

Dear SHARON I was in tears reading your post , how awful to have to put up withose side-effects and even worse nobody is listening to you . You are not being unreasonable to want some quality of life whilst on treatment especially as your family is so young . I think if I were in your shoes I would bluntly refuse to take any more Thalidomide ,…[Read more]