Hi Rangecroft

Welcome,I am interested in your reply as my husband is at the stage of remission ending,and going on Revidimide . We will know in the next couple of weeks.
I am not convinced about Revidimide as thalidomide treatment did not work for him, but it is the next line of treatment,so many cycles then used as maintenance until it…[Read more]

Hi Helen,

I am now back on Velcade for the second time, having completed 6 Cycles between May & November 20011 (slight break for a holiday in September, 2011) . First time round it was cannulated, this time Sub-Cut.

This is only Cycle 1. With Velcade on Days 1 & 8 and then 11 & 19… with Dex on Days, 1,2, 8 & 9 – 11, 12 & 19 & 20. I…[Read more]

Sounds a greaT trip David

its a wonder you had the energy to complete it time for a rest now how is the velcade going well i hope:-)
Love Jo x

hi Sarah

sorry they could not get enough of those little devils so better luck next time. gave up on my hair and had it all cut off so now its just wash and go my grandson said the other day when looking at photo's i like that one you had hair then gave me a big kiss so kids are cool:-P if they love you is doesnt matter
Love Jo x

Hi SCOTT

Dont get down hearted it seems like they are not giving up on you and your body could probably do with a rest let us know how you are getting on keep in touch:-P
Love JO X

Hi Karen

A warm welcome from me as well, I am a carer for hubby.

Hubby diagnosed in February 2011 after back pain became major problem in July previous year. CDT then Velcade SCT in May 2012 ,.waiting on results to confirm out of remission .

The last couple of years have flown by and our world has got a lot smaller,but cannot complain…[Read more]

Hi Christine
So sorry that things are rough but HOPE this helps. My act failed in Oct last year with a horrific 97% but they have finally got it down down with PAD.We have just been told that they are abandoning any further idea of a second act as I don't Ha ve enough stem cells so as am starting a low "consolidation" course of velcade on…[Read more]

Hi Georgie

Welcome to you and your Dad.
Its not an easy task this MM lark and if Dad needs to pop a few more pills and sit and have a chat with a Councillor am up for that I have done Both during my CTD and SCT and am now spot on.

Good Luck with your Dad and his on going treatment.

Tom Onwards and Upwards x

Hey Mavis sorry I must have missed this post :-S you must be nearly 9 months now 😀

Yes am sure glad of those that make the drugs and those that do the trials.

Keep well Mavis

Love Tom Onwards and Upwards xxx

Hi Karen

A warm welcome from me also 😀 .

I see you have put the kettle on that's good to see you have got comfy already well done you 😀

As for me ?? long cut short 😎

Diagnosed in Jan 2009 had CTD leading onto SCT December 2009 am now age 57 and sit here well and drug free 😉 , the road to remission was a bit bumpy at times…[Read more]

Hi Christine and Chris

Am sorry to hear that Chris is having it rough. but as has been said the SCT is not the best its said that MM can be controlled with drugs alone its jut finding which ones will work on Chris.

Stay strong you two

Tom Onwards and Upwards xx

Hi Maureen

So glad to hear the news!!!

It is important GP know they are getting it wrong!!

Yes you can not do it all,only your best,this Myeloma can take a carers health away as well ,you are in for the long haul,so allow yourself some down time.

I am so glad Ian is getting to gym,see if they have a small foot cycle he can use,even…[Read more]

Hi Christine

You say his bloods are ok except he is anaemic ,how are neuts and platelets surely they are low.This is what you would expect??? The reason I am asking,is Slims blood results have always been good, so they have not been able to use these as a true marker for his condition. This is why he has had lots of BMB.
You say he has not…[Read more]

Hi Christine

SCT are being done,if he can get his Myeloma down again,and they can produce enough stem cells it has been done.

Look at some of Marie's post from Kent,her husband had another SCT !!!!

I know the figues seem awful,Slim had 80 percent in BMB after 6 cycles of CDT,Velcade took it down to 0,knowledge will see you through…[Read more]

Hi Christine

My names eve and my husband is very much the same, I know how you are both feeling we are waiting on second BMB,first showed. 10 percent .Slim had his SCT in May he only got 6 months after 100 days,he had trouble getting his platelets up did not connect the two things.

Chris should be eligible for Muk 5 trials had right chemo 1…[Read more]

Hi Maureen

Well worth the phone call,everything helps.

Slim is not on treatment,that is the annoying thing,because the only way to tell what is going on is in BMB,had one in February which showed 10 percent ,another one 7 May,we are waiting on results.bloods showing small changers ,but not drastic,on a personal level I have learnt to go by…[Read more]

Hi Georgie

Welcome to the Myeloma Forum,I was going to say it,s not a nice place to be,but it is,and you have come to the right place for support.

What your consultant is telling you is true,chemo will do the job,radiotherapy is only for people who are in danger of having more damage or the pain becomes to much .

If you want to help your…[Read more]

Hi Rach

It's hard but do not panic it takes time plus blood test to see if its on the rise,2 sounds a nice number,has your mum been on medication or been off colour,it all effects the blood results,its never just about blood.

I also think its a natural reaction because your mums had a SCT its not the end of worrying ,I some times think its…[Read more]

Hi Karen

I am so sorry to hear the outcome of Myeloma,that should never of happened ,we need to hear from people like yourself,people who if they had been diagnosed earlier who would be in better health as less damage would possible not have happened,I think you GP owes you answers!!!

Do you remember the name of the private osteopath ,may be…[Read more]

Hi Maureen

I am glad Ellen could help you,it is nice to be able to ask questions and get a different view ,most people on here are Myeloma patients or carers,then family members who need answers.
When Myeloma is first diagnosed,you read the leaflets and think how an earth are you ever going to understand any of it,specially medical jargon, you…[Read more]