Hi Maureen

I am not surprised by your story,as Slim and a few others have gone through a similar path,I actually sent a letter to my original doctor asking for an explanation ,thinking he might just have the guts to admit,the mistakes he made,but it was a waste of time.I phoned for a referral ,you need them private or not,another doctor phoned…[Read more]

Hi everyone

Andy I think Velcade is around £ 750 per phial,but the makers of Velcade have some form of agreement that if it does not reduce the Myeloma. by 50 percent the health service do not pay for it plus it is a trial drug unobtainable,as not passed by NICE,,that's the way I read it any way,don,t quote me David. Lol

To give my local…[Read more]

Hi David

I see you are quoting me, At the time I ask Slims consultant about possible maintenance ,with Velcade I explained Slim had had CDT then Velcade then SCT and wanted to know if there was the possibility maintenance. As at the moment it is 10 percent in bones. I was just putting a possibility forward rather than possibil round of…[Read more]

Thank you Andy and Sue

Andy at least we got SCT stage,will be your turn,a doña we hope..xxxxxx

Sue how are you doing,now the rush is over,I hope you are managing to sleep,give yourself time to recover.

I am off today for afternoon tea,( Mother's Day present from one of my daughters ) I have invited Jenny who has become a friend,her…[Read more]

Hi Helen

Just thinking about you,it's worst second time round.

First time you are just grateful you at last know what is wrong,second time round used up CDT. Plus Velcade ,the options reduced,It is a shock,we thought Slim might get a couple of years,but 10percent in 6 months,that's not a bit in the bum,it's a shark attack.

As I said…[Read more]

Thanks again everyone

It is nice to have your best wishers.

Tom sold the van today,exchanged it for a smaller one,which will be easier for me,cost me money,but it will be easier to take out for weekends plus the odd weeks ,the other one was made for staying away for long periods, the last thing I want is for Slim to be stuck in doors ,he…[Read more]

Hi Baba and Jean

We have known for a month now,it is just getting you head round it and getting over the disappointment ,we have both picked are selfs up again,plans changed and ready for the next round,stopped feeling sorry for myself,given myself a kick.(and that's just me) .Slim deals with it differently than me.

Selling large…[Read more]

Hi Jean

Good to know Frank got home,it does take a lot out of them Jean,when Slim came out the idea of going home gave him energy,I wanted him to have a wheel chair to the car,he refused,we made it from Kings in London to Kemsing Sevenoaks,had to stop as he could not go on,had a rest,then rushed like mad to get him down to Deal took 3 hours…[Read more]

Hi Maureen

I never realised you had difficulty getting diagnosed,what did you doctor say about it???

How are things going,are you managing to get any rest.Love Eve

Hi Baba

Well 1year on,and lots of years in front of you,congratulations .

I know you go to Canterbury ,so is it just Zometa now and a visit to see consultant every 3 months??

Let me know your next appointment,it may just fit in with one of Slims,I think we will be on the old route again.
Have a nice Easter.Eve

Hi Jean

Sorry to hear Frank,s still in hospital,did not realise as I do not look in on here a lot at the moment, I thought Frank would have been out by now,kidney,s leaking,that's a new one on me,is he in any pain!!! I use to shower Slim when he was all hooked up,some times I ended up wetter than him,he had a shower but a wet room would have…[Read more]

Hi Dai

You have just reminded me were I was 2 years ago at Easter and it was not avery good time with Slim.

I think you are asking are you being a little bit neurotic,well the answer is NO,any one who understands your position knows all the possibilities ,and the thought of going to any hospital during a holiday period, is worrying. Yes…[Read more]

Hi Dai

Slim has already had Velcade ,!!! I was hoping the doctors ,might consider a form f maintenance ,as BMB are the only way to tell Slim has Myeloma,you would not believe how good his bloods are !!, most properly healthy than mine.

We should. Have the answer once we have results of MRI and body scan,by the time we see consultant it…[Read more]

Hi Dai

Sometimes these experts forget what it is like for the person with Myeloma,and we can make up all the excuses for them,we know they have to be practical,but I do think they need to go back to school and take lessons in compassion and politeness .

I would not wish this disease on anyone,but they should show some understanding how we…[Read more]

Hi Jan

Welcome to the site,and I am sorry you are going out of remission.

I might be wrong on this but reading present information. To be eligible forMUK. 5 I think you have had to had Revidimide ,you do not say if you have been on MX1 trials???.
I thought the criteria was you have had to have had Revidimide ,before acceptance on these…[Read more]

Hi Joanna

I am sorry you have had to join us,you are so young with children if you want to join the under 50site you have to apply look on this thread I think Deb,s up,d the post last time.

If you do not mind joining the rest of us,it would help if you went on the Newcomers bit,just introduce yourself and tell people a little about…[Read more]

Hi Alco

You can not base having Myeloma purely on urine,other factors are taken into consideration.it is not worth going into unless you are diagnosed with myeloma,low white blood cells can open up many problems,so do not go scaring yourself thinking you have Myeloma it is uncurable.

Go back to your doctor or speak to a well qualified…[Read more]

Hi Dai

It is good news,I hope if the medication you are on does not work I hope you get this one 500 people only,as you said it has to show in urine,

I worry that as Slim did not respond to thalidomide how well will he do on Revidimide ,and if the same conditions apply,he will not qualify for the new trials.

Any one heard from…[Read more]

Hi Dai and Jean

We are suppose to be getting all these new people to tell us about themselves plus post a picture!!!!!

Dai Slim has had CDT plus Velcade next should be Revidimide,!!!!!! We though we might get 2 years !!!,,the only way we new it had returned was I asked for BMB as it does not show in blood or urine!!!!!!!?. We do not know if…[Read more]