Hi Fiona

Two years is a long time in the Myeloma Bubble,time for new drugs to come on and advancement on ideas,never forget everything is just an opinion!!!!

The say you have to put your trust in someone,put your trust in each other Philip to make the most of what every lies ahead,and never never give in,and you Fiona to make sure every day is…[Read more]

Hello Stuart

Just popped in on Fiona,s post to say hello! We met at the Marsden by the car parking machine that eats money !!! Lol

Slim is now on Palliative care,the Velcade worked again,but blocked arteries were the on going problem,which resulted in other issues.

Sorry for taking over your post Fiona,hope is a wonderful thing just keep…[Read more]

Hi Maureen

You are right to get a second opinion ,you do not need a stroppy doctor,Slim has always had the cyclophosphamide and Dex combination,you need a hospital that is able to tweek the treatment to suit the person.
Better to get a second opinion in the early days,I would look up to find out more about the hospital and consultant,you do need…[Read more]

Hi Helen

Good to know you are doing fairly ok,may be pomilidomyde will be the one for you!!!
Slim did well using Velcade second time round,knocked to 10 percent on 3 cycles,the platelets and artery blockages were the problems.

Once he realised what was going on,had an impact,but just wanted to get home,did not want it to be this way,but the…[Read more]

Fiona

You have had one of the best experts in Prof Morgan,Slim had Faith Davies,but sadly both going to America in July!!

Just sent an E Mail to Sharon thanking the unit for all there support.

Andy was on Revilimid for 22 cycles ,Slim only got 4 cycles as it knocks bloods to nothing,but Andy is the better one to consult.

I think the…[Read more]

Hi Fiona

Children never say much,and I personally think we do not give them enough credit as often they know what is going on,but do not want to upset mum and dad.

Matty,my grandchild died two years ago and his sister is still going through therapy,it’s not an unmentionable subject,but both siblings have problems on a day to. Day basis.

Looking…[Read more]

Hi Fiona

It does sound if Philip is high risk,they use this term when treatment works well,but starts up again as soon as treatment is finished,which does not give you much time free of treatment,

We all hope for remission,and not to be on pills all the time,all of this is a gamble at choosing the right drugs,as you know in Slims case it did not…[Read more]

Hi Helen

I sent an E mail to you!,So my question is are you alright????,or just making the most of this beautiful weather.

Slim has had another spell in hospital,he comes home today!!!at peace with myself,would have liked ,the hospital to forget about ticking so many boxes and consider the patient and carer before they feel the need to send in…[Read more]

Hi

Myeloma has a major effect on carers,it is wise to know what to expect as the years pass and learn to come to terms with it,as the years go by you do learn to accept and come to terms with your husbands illness,so try not to look to far ahead as nature will take it’s course and as time goes by acceptance and a form of peace follows.
On a more…[Read more]

Hi Mike

We come from the south east coast,called Deal,you can see France on a clear day.
Slim used to have treatment in Canterbury,but was refused any more treatment at Christmas,Faith Davies agreed to treat him,we usually hit the rush hour going as clinics are in the morning,always the odd accident,it’s M20M26M25.then 8 miles to Sutton ,it…[Read more]

Hi Jane

Welcome back,you have been through the wars,battling away,so glad you made it,to tell us about it.

Let’s hope this is now your time!!! Go out there and enjoy every minute,the experience does give you a different out look on life.

Ours is being here each year to smell the blue bells,heaven on earth that smell.Eve

Hi Sandra

Just to say welcome

As you know your condition is rarer than Myeloma! I believe 600 cases a year,I would go back in to Related Conditions,you should find a few in there with Amyloids in the heart,they one I am thinking of is an Ozzy who lives with this condition who also travels,so might be worth a search.

Good luck on your journey,my…[Read more]

Hi Mike and welcome

I think may be what you do not realise is your good news of lasting seven years,if you look at statistics when you are a new MM it’s depressing,and some one like you comes along and says 7 years,you give the newbies so much hope. The waiting room is so small at the Marsden,bit like sardines in a tin,you cannot help but talk…[Read more]

Hi Denise and Carol

It’s a sad fact this disease has a massive impact on all family members,most people know there is something wrong but when it’s diagnosed it comes as an awful shock,I think it’s because there are so many different symptoms,either bad backs,or broken bones,there are only 3000 cases a year in this country,then you get the…[Read more]

Hi James

They like you to be 12 months clear and to have had a good response .nice guide lines is it’s allowed if you have had a good response .

Revilimid they usually use until it stops working.
Pomilidomide is the latest one coming out in trials.

When he says chemo!!! Is he talking just cyclophosphamide ????

You can go into trials on the…[Read more]

Hi Vicki

Sorry to hear you think it’s coming back,it is a bit of a blow and takes time to get your head round it,but you have to pick yourself up and get on with it.

If I was you I would try to fit a few more holidays in,because you just might go on watch and wait until treatment is needed,so make the most of your time now.

Worrying about…[Read more]

Hi Princess Fiona

Yes lucky to live in a lovely place,we usually take the dog for a walk along the sea front,on a clear day France can be seen.
Hope the children have a lovely time when they come and this beautiful weather holds for the rest of summer.

The hospital visit was not great,4pm appointment got platelets just after 6pm,I think some one…[Read more]

Hi Les and also Janey

They say grief has different stages ,the frustration of not being able to do anything,the anger that the death has caused,and the emotional side of coming to terms with everything that has gone on,some are able to talk about it many are not.

I do not think you can learn these things or get any experience until you go…[Read more]

Hi Everyone

I suppose as I have been on here 3 years I am an older now,as some of the people who use to post,there partners or themselves have passed away,

I always use to reply to a new comer even if it was just a welcome,but a lot of general information has changed in three years,so I am out of date with new info.plus it really bugged me,when…[Read more]