Hi Dai
I think the important thing is you do have some treatment that will see you ok until such time as you get the Dopler scan, no doubt by the time you get it, the medication will have been so effective that the dopler with prove negative.
Im pleased you finding the low dose easier to contend with and hope your fingers recover soon from the…[Read more]

Hi Tina All his bloods were borderline, so they went ahead and gave him the full whack, but his consultant did say it would be unlikely he would be given the next dose, which is in 2 weeks time, he will probably need some GCSF injections. ( they bring back some memories) They are all very nice and cant do enough for us both but it was such a long…[Read more]

Hi Ivan,
Welcome to the exclusive little mm club.
I am married to mm sufferer. I recognise the names of your interim medication. Ferusemide will give you back your previously slim legs.LOL provided you drink plenty of liquids. Statin will bring your cholesterol down . It goes up because your kidneys are leaking protein and for some reason this…[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]

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]

I Cant take credit for my thughts Dai, I read it and watched a video from usa that Jet suggested there had to be more consideration for the quality of life whilst treating MM and it also said the results on lower doses of drugs where just as if not more effective than hard heavy doses.
In any event, I am pleased your feeling much more chipper and…[Read more]

Brilliant Sharon,
Pleased to hear you now have a plan. Do you have help with your children ? I hope your not struggling on your own.
little ones are so exhausting and cant understand why mum is not well.
I can tell you that when my husband was 1st on Thalidomide he too was having a bad time but he started it in August and had a drug holiday…[Read more]

Hi Joe,
My description of Peter when people ask is he's 'coming on' meaning he is definatly not as bad as he was, he is not at his best by any means but he is somewhere in the middle.
He is gaining weight, gaining strength, and gaining an appetite too. We are back at clininc next Tuesday when he will be told the day for his 2nd transplant.…[Read more]

Hi First question on the list for Friday is can he have a PICC line Itwould be very good anyway as apart from his bloods at the hospital he has to have an INR test every week as hes on Warfrin and the district nurses have the same problem

With regards to his tiredness I wonder if its just the blast of treatments he had on Friday or it could be…[Read more]

Hello Eve
I dont think the apprehension ever goes. I alway keep everything crossed when we go to clinics but my method is expect the worst and if its better its a bonus if its as I expect its not such a sad great shock.
Fail to prepare …. prepare to fail… Ever the pessimist never the optimist .
Good news is always welcome of course but…[Read more]

Hee hee I got Peter the cinema thing with his DLA last week and its brill… Means I can buy extra popcorn as I havent paid to get in … BONUS but had to watch Harry Potter … not my cup of tea. But cant complain wanted to get him out to the blu** house as I was going up the wall. Oh forgot to say Bridget we used to put some books on the legs…[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]

Dai
OMG Peter had dreaful DVT in both legs with velcade which turned into many clots in his lungs. Too many for them to count. Pulmanary embolisms.

There is a simple blood test called a D Dimer or D diamond test which takes no time at all for the results. Following which a scan ( type pregnant women get) for the clots.
In his case he had big…[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]

Hello Eve
Well I took your advise and got the appiances myself and wooden worktops too, just getting the units and fitting from an expert…. I am almost an expert myself (not at fitting but know all I can know having spent far too many hours into the wee small hours doing research)
Thanks for the advise and hope Slim is doing well. You will be…[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]

Hi Sharon
Hang on in there, first things first, Im sorry your having such a dreadful experience on Thalidomide. It is not a pleasant drug for anyone, and the knowledge that it is being used to fight cancer is mindblowing.
Sharon I do think you need some help from someone who can talk you through this and suggest tommorow you ring the freephone…[Read more]

I Bridget,
I dont know how I missed this post ( Well I do I have been researching kitchen appiances, benches and workmen etc. So i have been buried in the computer with an occasional visit to outlets etc. I hope by now your legs have got a little better, but if they have not Peters specialist told him he could take up to 200 mg a day NOT ALL…[Read more]

Hi Sarah,
I know your feeling very apprehensive at this time, but you know they can do some amazing things in hospital these days.
I am sure they will do what ever is needed to get Gordon back on his tractor. Well maybe get him home first.
I look back a few weeks to when Peter was soooo ill unable to get his breath his heart racing at break…[Read more]