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]

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 Christine
I don't have much to add but I do wonder what you mean by keeping fit, is Chris working out? It's just that the effort involved with work out and muscle maintenance uses lots of energy, and I'm just wondering if that is causing a lot of stress to his already very pressured body?

Love Helen

Well, good people out there, does anyone have any tales to tell about working and energy levels while on Velcade? ( with dex and cyclophosphamide)
We're you able to do it? Full time? Part time? No time?
If not what happened?
Could you drive?
Did you have periods where you were 'good' and 'bad'.
Could you plan a day when you could do…[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]

Hello Mavis
Thank you
I too was surprised! I had been told it was slow to grow and so would be a few months/ years before needing more treatment. I know my bmb has been the subject of much discussion with my consultant and his colleagues and the considered outcome was to start treatment now! I have a suspicion that the 'mixed' cell nature of…[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]

Ps I think you look ok H

Dear David
Looks like you have done an amazing amount. Weather seems to have been good for you too. Hope all your other trips go as smoothly
Love Helen