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 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 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]

A welcome form me too Karen.

I was diagnozed in May 2011 (age 49) and had a SCT in February 2012.
I was very fortunate to have been diagnozed at a very early stage before any major bone or kidney damage, so haven't had to have anything like you.
It must be awful and I really feel for you.

After SCT, it only took me about 4 months to feel…[Read more]

Hi Skyblue

I find your post interesting because I'm convinced Myeloma and other related bloodcancers are genetic.
I was diagnozed with Myeloma in 2011, my father had Non-Hodgkins Lymphoma and my grandfather (dad's father) had leukaemia.

I also know other families with similar patterns.

Whenever I mention it being hereditary, it seems to…[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]

May just bump into you on the 6th June, my appointment is 11.15, same day.
I agree with you about the day clinic seems to be chaos at times, but he staff are great, first name terms these days!
Regards Tony F

Hi Georgie I too was feeling very low at the beginning of my treatment and lost all power in my legs for nearly 6 months.
I am back walking again not as fast or steady as I used to be I am 56 and felt very frustrated and wasn't able to cope for quite awhile then I was given the citrolapram and take one at night which I feel helps. Hope this helps…[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]

I must have moved into your room as you moved out, can't remember the 'cell' number but I had white cups!
My next clinic is June 6th at 11.45 then upstairs for my monthly penidronate infusion.
Might just see you there.
You are right about Dave, very good and very thorough.
Regards Tony F