Tom and Dai

First Tom,it shows in the eyes.

Dai in the south the woods are covered,next week you will be lucky to see them,the blossom on the trees is going due to wind and rain,we watched a niebour with here young daughter picking up handfuls of blossom like confetti ,throwing it up in the air,gone until next year.

Such a lovely time…[Read more]

Hi Tom

We started travelling many many years ago,I alWays said I would never take photo,s if truth be told I would bore my kids ridged with them.

To me the whole point of an adventure,is for Slim and I to share,it belongs to us,wonderful times,lots of travel,my kids and grandchildren have to find there own adventure,my photo,s are in my…[Read more]

Hi Jo and Jean

Hope you are both keeping well.
I bet the house is spotless Jean takes time to get them back on there feet.:-)

We are waiting on results,phoned but they said they were not in!!!!Consultant Friday!!!

We have just bought a new Motorhome!!!! Other one was to big for me to manage chores ,but the new one is more manageable…[Read more]

Hi Helen

I am the carer,and cannot blame the dex8-)
Hospital waiting times,grrrrrr organise yourself s if I started,I would need more than this topic. I found it horrendous ,far easier to do a 60mile round trip,specially when Slim was not feeling to good,I have been known to take Slim home after Velcade and go back on my own for tablets…[Read more]

Hi Tony and David

Spring might be late this year,but its worth waiting for after such a long time not being able to enjoy it.

Slim was in hospital for 22 days first time, I use to drive with windows open along the A2 on the way to hospital at 8am back at 9pm,so spring passed me by.the next time Slim was in Kings having SCT,good hospital,but…[Read more]

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]