Hi Dan

That's wonderful news,give your self a pat on the back,you are doing wonderful. Please take time for your exams ,they are your future and very important,make sure the appropriate authorities know your problems,it,s important.

There is no magic formula ,the general feeling is your dad should get 1/2 the remission ,but lots of factors…[Read more]

Hi Helen

Slim had 6cycles he was much better in himself. On Velcade,hated the messing about between bloods and treatment,we did try to vary it as spent an awful lot of time just waiting round eg bloods 9am Velcade 3pm never,never on time,also once a month tablets late as usual by hours usually 6pm. Towards the end went in at 9am took slim…[Read more]

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 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]

Hi Maureen

Welcome, may I first suggest Ellen Myeloma nurse on here can help,send EMail or phone.!!!

I do not know the chemo combination ,so cannot comment, I do know he should not be in pain,but you do not say what combination of tablets he has to help with pain,plus what damage he has in bones or if pain area is we're lesions were,so…[Read more]

Hi Dai

You have a good point with Muk 5!

I asked about it,consultant said Slim had not had Revidimide so did not qualify, Helen has not had Velcade so questionable!!!
But I am making further enquiries

The reason why is when Slim had CDT over a period of six cycles it had no effect , the myeloma increased to 80 percent, now they are…[Read more]

Hi Maureen

Ring up Myeloma UK speak to nurse and they will send you the package as many as you want to take into GP.

Wishing you well and it's good to know you have some support . Love Eve

Dear David

Your posting jogged my memory one we have stayed in the Union Jack Club,did not realise it still existed ,mine was no honey moon, ( dirty weekend) springs to mind,still waiting on honeymoon,Slims not a great one for surprises his excuse is I always find out about them!!! Two a few years ago we spent time looking for Slims fathers…[Read more]

Hi Ted
Blood test do vary,you need to take certain blood test and urine test to suggest a blood disorder .

When you feel ill a general blood test is taken looking at different functions,doctors usually have blood test on a chart in there computers so any change stands out clearly. These should alert doctor to changers within the body,here…[Read more]

Dear Dai

I am so happy for you and Janet,I can almost see that big grin on your face.

Velcade worked well for Slim while he was on it,just tiring going to hospital, not the Velcade waiting hours ,I know your experience of Velcade is different,if you are not having it subcutaneous ,get a hot water bottle,worked wonders for Slim,before…[Read more]

Hello Eva

I was trying to say once you have been diagnosed and think there are questions to be answered!! Concerning your treatment leading up to Myeloma being diagnosed ,once you write a letter asking questions, the legal implication kicks in, so your chance of any truthful answers if mistakes have been made is nil. As I said lip service…[Read more]