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 Jo

Wanted to send. You my love and prayers. Go well.

Love Mavis xxx

Hi Helen

I was surprised you are needing so much treatment when, earlier, you were doing so well. What has happened about work?

Do hope you manage to knock the MM right back again.

Lots of love.

Mavis x

Hi Dai

I too am glad that your Consultant has come up with something after your disappointment about the Trial. I hope and pray that the Velcade and Dex will have a synergy that will work for you.

Lots of love.

Mavis x

Hi Christine and Chris

Also wanted to welcome you AND say so sorry Chris's treatments haven't worked.

SCT aren't the only way to go. Several of us on the Site are managing without and still keeping going! I see Chris was on Velcade and got núeropophy. I haven't had it, but have read that having it by injection makes one less prone to it.…[Read more]

Hi Karen

Just wanted to join others in welcoming you to the Site. Sorry you have had such a difficult time. Like you I find physio really works.

Very best wishes.

Mavis x

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,

I am so sorry about the BMB results. I can't help with your question but I just wanted you to know I am thinking of you and Chris and hoping Chris finds a treatment plan that will not make the neuropathy worse.

Megan

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]