Hi Terry

My husband has been on Claxane off and on for a number of years,and seeing the consultant after he had a blockage in the artery,and had to up had to up his dose from 40 to 100,he made a remark about being fed up being a pin cushion!!!
The consultant said he could have RIVAROXABAN but had to make sure he took it daily as it worked only…[Read more]

Hi Maureen

We will not know for some time if treatment is working,but in general is bloods and health are a lot better,plus he has just had a chest infection,but held his own with antibiotics ,so to me that is a measure of how his immune system is a lot better. His pain levels are better,you can tell just by his body movements,so I do think he is…[Read more]

Hi Maureen

Make sure you get away for a holiday before Ian starts treatment??

I often wonder about haematology consultants,how much they keep up with things,I suppose we are lucky to have Myeloma UK because I get a lot of information from the news letters that they post also follow them on face book,so it saves me often looking for info,and we…[Read more]

Hi Maureen

I too am delighted that you and Ian got away. Especially after such a bad year. Isn’t it good to feel ” normal ” again!

Here’s to your futures!!

Love

Mavis x

Hi.

Just to confirm what Eve has said about Zometa. I have been on it for well over two years and was on tablet Bisophonates for a year before that. Like Slim I have no symptoms except a flue like fever the first time I had an infusion. They only used to give them for two years but have decided they are worth while continuing with as they do…[Read more]

Hi Jane

How good to hear your story I am sure it will encourage those facing SCTs especially those deciding whether to go for a second.

My story is encouraging too although nor so dramatic. I was first diagnosed three and a half years ago and am currently in full remission following CDT.

MM isn’t a good disease to have, but there is hope for…[Read more]

Hi Maureen

Glad to See you managed not just a break,but a posh one lol.

Glad to see you posting again Eva,you must feel down not being in your own home,B&B plus hospital,is no joke,I suppose it’s the only way forward,will you go straight into another SCT from treatment!!!!,which hospital are you at in London!!!

I hope you both Ian and Eva find…[Read more]

Hi

My husband has been on Zometa for 3 years plus Ad Cal ,I can only tell you,he has no side effects at all,he did need a tooth removed,so had it removed. In hospital,as dentist prefer hospitals to deal with it,no problems at all,there are a small percentage of people who have problems,but you have to look at the bigger picture,Myeloma does…[Read more]

Hi Dusk

Can I ask you a nice straight forward question????

Have you started treatment yet??????

You have one thing wrong about me dusk,I am a desperate vulnerable woman,who feels like screaming at the moon,often drive along the road with tears streaming down,for things I’ve loved and lost,just like most people feel on here,that’s how we have…[Read more]

Hi Graham

I would be lost without having my husbands blood results,they give so much information to his general condition,and show improvements or any condition that needs to be watched.!!!
I also have results from any scans that have been done,I think personally it saves the consultants time,and you can ask questions on things you do not…[Read more]

Hi Gill

Lovely to hear from you,I know you are coping!!,you made me laugh about your adventures to France,even if we do not like it life goes on,people seem to think it should get better after a short time,the first year is a challenge,the second year reality sets in,but saying that you seem to be facing it all head on,my admiration of how well…[Read more]

Hi Dick

Try to think of it as major blood surgery!!! Give yourself three months,then think the next three months will see you responding well,3 weeks!!! What the hell do you expect!!! Lol.

Seriously some people take a long time others don,t.i think guts and bowels are the last to improve,you have age on your side,so don,t despair make the most…[Read more]

Hi Dusk

I knew you would come in on this one. Lol

May I suggest you go into the Myeloma Beacon and read opinions a man called Arnie who is a MD with Myeloma,who is nearing the end of his roller coaster ride,well worth a read,he puts the emphasis on what treatment that is available,plus gives his opinion on trials,it’s about drugs and not him,

I…[Read more]

Hi David

Slims platelets never reached dizzy heights after his SCT,then the myeloma came back after 6 months ,so he went on CDR,,at the time no choice part of NICE controls with drugs,I was against this at the time because Revilimid is a cousin of thalidomide and during his 6 cycles on thalidomide his Myeloma increased to 80 percent in bones plus…[Read more]

Hi Julie

My husband is on fourth line treatment CDV. It’s exactly 3 years since he was diagnosed,I often wonder if he had not had a SCT would he have had a longer remission!!!!!

So I suppose we all do what ifs,hindsight is a wonderful thing,just wish I had the gift.

The problem is often the type of Myeloma and how aggressive it is,plus the fact…[Read more]

Hi Jean

Well we have just passed three years,in this Myeloma Bubble,and the Myeloma seems relentless if I clocked up how many hours have been spent driving,waiting for treatment and every thing that goes with it,I am sure it would add up to a good portion of those three years,yet it’s time we are trying to buy,a bit like Dai trying to get to…[Read more]

Hi Trigger

Welcome to you and your Mum!

I’m another one who didn’t go for a SCT by my own choice. I didn’t want to gamble quality of life for what could have been a short remission. About 14 months after diagnosis I had six lots of CDT and fortunately got into full remission (now 18 months and counting.)

It is a very personal decision about…[Read more]

Hi Michelle

Delighted for you. Long may it last.

Best wishes for the future.

Mavis

Hi Wendy

What a rotten and difficult time you are having.

The unfortunate thing about MM is it creeps up in very varied ways making diagnosis difficult as you have realised.

Do keep in touch and let us know how things go. This is not a nice disease, but there are worse, AND, we do get through all it’s challenges. I’m sure you will get lots of…[Read more]

Hi Jean

You will never get away with Gushiness at Scrabble!!!! Miss playing but did not like the new format and I tend to use an I Pad,also lack concentration these days,so it’s jigsaw puzzles at the moment,it’s something we can do together.

We now go to the Royal Marsden in Surry,bit of a journey,but easier than going to central London.Started…[Read more]