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]

Nice to hear from you Princess Fiona

My husband says my daughters are clones of me!!!!but I see them as children I am very proud of,so cannot complain.they hate to hear that they are like there mum. Lol

We had good news today,Slim is coming home tomorrow ,have arranged Slims new appointment at the Marsden,thought I had arranged with consultant…[Read more]

Hi John

Without are lovely Dai it has gone flat,a great loss,.

Hope your still laying cement without to many aches and pains,may it go on for a long time,
Never asked you what part of mersyside do you come from,or are you a wooly back!!!!!
Eve

Hello Ellen,plus Alice and Wallace

I must admit I am forthright and say it as it is,so what can I say except I am sorry if I offended anyone.

I am a carer and do use the carers section,concerning my own husbands Journey,because I realise that hearing from someone who is on a down wood path,is not good news.
everyone has a point of view and…[Read more]

Hi DXS and lovely David.

I think may be I should have said it’s your right to apply and even appeal a claim.

Except my apologies David. Lol.

This in its self is a difficult subject,on one hand you have all the negative press releases people claiming benefits!!!?, and the other side of the coin many people who need this help who are not…[Read more]

Hi

I do not think the dosage is the same for all patients!!! It is decided on an individual bases,for example my husband had his main chemo at half dose as he had had kidney problems previously,but they had regenerated to a fairly good level.

As for remission, numbers do not mean anything,!!! You have to go into this knowing all the facts and…[Read more]

Hi Maureen

Velcade takes a little time to get going,so try not to worry,light chains,can vary,we no longer go by light chains,as they did not show a true reading after Thalidomide ,they read normal,but BMB showed it had gone up to 80 percent in bones.
I now tend to go on how Slim feels in himself then wait for BMB results,his has gone down to 10…[Read more]

Hi Sharron

When you are ill and trying to come to terms with everything it’s hard to be told,”sorry you have not got Cancer we cannot help you”. Did you laugh or cry?????

I would go to your local CAB,they have experts who will help you fill in the form,get a letter from the hospital for support to your case,jump over the first hurdle,and appeal…[Read more]

Terry

I did say it takes nothing from you!!!,believe it or not we are on the same roller coaster with the same problems,yes we are old age pensions and you are a young man with a family.

You would be very wrong to sign off from here,because we all understand your position.

I am sorry you find my opinions hard,I was just trying to explain it…[Read more]

Hi Everyone

I felt compelled to give my input on this,and I can tell you it is so annoying trying to get on line,!!!!

Terry let me explain,when you reach 65, you are entitled to very little,everything except attendance allowance,is considered by the amount of money in your bank account,money that you have worked and saved for your old…[Read more]