Hi Chris
Congratulations on your forth coming wedding,you can say one thing about this B—-y Myeloma,it does put every thing into perspective.

Slim and I lived together for 30 years decided to get married before mm came along just never got round to it,finally set a date,but never made it as he ended up in ITU,so are marrage took place in…[Read more]

Hi Tina
Fluid is a must,I have the same problem getting water down Slim,I bought 2 plastic jugs with lids,and fill them up with week juice,and put in fridge,Slim found it easier to have a small glass,so kept it filled up constantly,he went through a stage of fizzy drinks,my attitude was anything that goes down,you will find your taste alter all…[Read more]

Hi Sue
So many years of fighting for drugs,again like Bridget it seems so unfair,I am amazed at these criteria they have,MM patients lay them selves out to become guinea pigs ,and they get choosy who they take,are MM patients part of the grand scheme or just a by product to be disposed off if you do not meet the criteria.
Sorry I sound so angry…[Read more]

Hi Bridget

Just reading you news,and wondering what to say,sorry does not seem fitting, it is strange the way,over time with this MM it becomes another hurdle to get over,and now you are being told there are no more hurdles,well Bridget if you are prepared to jump the hurdles,they should at least be prepared to find some.
I like most people on…[Read more]

Hi James

Good to see you have got through SCT and now,working on you general health,Slim my husband has not yet had SCT but after a few hiccups with treatment,found himself unable to walk with out sticks then only a short distance.
He started walking short distances often with me pushing a wheelchair just in case, went to one stick,then…[Read more]

Hi Dai

When I read you had missed out on trials,I put off replying as it just did not seem enough to say how sorry I felt for you,it just seemed so unfair,but hey! some times life is not fair,and by the sound of it you have picked yourself up and hey ho! on to the next treatment.
You cannot keep a good man down:-)

At least with the night…[Read more]

Hi Andy
Again welcome to the site
My name is Eve and I am a carer to my husband,I use to be a 3am person,but things have got a lot better,and my husband took my advice about seeing the doctor and taking an extra pill,to try and get some normality in are life.
He now takes a light ant depression tablet which makes his body relax so sleeps all…[Read more]

Hi Bridget and Helen

Bridget I do not know if they do accomodation,but I will ask,I have been told its the main trauma hospital in London,deals with anything bad that,s going down,The easiest solution would be go in one day have test then come out after 2 days of test,I am lucky I have a daughter who lives in Sevenoaks,but last time she…[Read more]

Hi Mavis and Tom
thank you for your good wishers.Tom I posted on your face book,don,t you want to be my friend:-( 🙁 🙁

Hi Bridget

Although I originally come from Liverpool,I am a country bumpkin at heart,so London was a bit daunting,Just cannot see Slim coping well with train,all though easier option,last time we went my daughter took…[Read more]

Hello Alan and Dave
Welcome to the site.

Dave pp levels at 6,it just might be a blip,Jo on here had food poisoning and her levels went up,only to go down again when she was better,its going to be a hard 6 weeks waiting for next blood test.As to new treatments as Gill said lots in the pipe line,

Alan there are lots of people who had SCT on…[Read more]

Hi Tina
No,no break,if your on intensive pathway,if you have bad side effects they can reduce dose,4 days of dex is very full on.If you have problems please mention them .At least you will only go to hospital for bloods,tablets and Zometa,if you hospital is well organised should be able to do it in 1 trip.

Try not to worry everything will fall…[Read more]

Hi Everyone

Come on Tom admit it right arm pain,how many pints do you have to lift until pain starts!!!LOL

Slims pain started in his back when x,ray came back had an old brake plus new brakes,told would heal in 3 months,6 months down the line diagnosed with MM.
Only went to doctor,s because I nagged him!!!!
My advice is go to your own…[Read more]

Hi Min
I feel like Gill,but I am also very proud of you,you have picked yourself up and started to find a new life,as David says we all know what the future has in store,but you are just showing it can be done.

I cannot find you on facebook Min,I would like to keep in touch,I will all ways be grateful for all your help with Slim,you kept me…[Read more]

Hi Tom,
I am so pleased for you.I hope we are not going to loose you,now your fighting fit and officially stamped to be first class condition.:-(

We need more people like you on this site,to tell us the good side,it gives a lot of people hope,so don,t think about loosing us,still cannot find you or your breakfast on FB,or Mins.

Love Eve

Hi Tina
My husband was on the myeloma X1 trials had 6 cycles of CDT with a few hiccups in between,It is a 3 week cycle of tablets which you will take home with you nurses will go over all the tablets with you,there will be extra tablets to stop you feeling sick plus others.You need to write out a chart or get a dairy from Ellen its a must for…[Read more]

Hi Bridget
Sorry to hear your having a hard time,i can understand you not wanting to go back another day for treatment,but all that time at hospital must have left you exhausted:-S lets hope it works.Eve

Hi Everyone

Thanks for the info Ellen,I know this is a complicated complaint,but hope you understand how lack of knowledge does not help the patient.
Good luck Dai with your bottle,!!!
Hi Min no holiday yet,as have had a number of hospital appointments,hoping to fit a cruise in before May,looking good.
Min believe it or not if Peter is like…[Read more]

Hi Jill
My husband has just finished a course of Velcade which he found ok,except for the hospital visits at your mums age they will only do it once a week,but first it,s blood then velcade and it can be combined with her Zometa so one less hospital visit. It does depend on what hospital you attend some can do the whole process under 2 hrs.some…[Read more]

Hi Dai
Min is right about less liquid needs to be day before 24 hr bottle.!!!!

If I am correct Dai you have Kappa Light Chain like Slim,so bloods do not detect it and urine is the marker,so as Min says how do they know you have it back,have you had a MRI scan or BMB,if its showing in light chain test it has to be going through the kidneys…[Read more]