Hi Mari
How are things going for Steve and yourself ,its all a bit of wait and see,not a nice position to be in,but it just might be a blip
Hope Steve is keeping fit on the bike,long rides might take his mind off things.As Deb say,s retail therapy is a good thing shops are full of lovely things,might be worth your while to take your mind off…[Read more]

Good Morning Every One
Susannah thank you for information and yes i will be interested on your husbands progress,it,s a good thing for us to know about new trials,and it has to be helpful to you to be able to talk about it openly so I am looking forward to see how things are going,about the Dex on MYeloma X1 trial the dose was reduced on Slim to…[Read more]

Hi Min and Mavis thankyou both .To be honest I am quite relieved I dont have to wait any longer to begin treatment , the doctor I saw today said he was just going to go ahead rather than waiting for funding approval , good man ! Iwill have to be very vigilant about getting myself to the hospital if I get an infection sooner rather than later ,…[Read more]

Hi Craig its great to hear things are looking up for Etta now , especially when those pesky numbers drop really low!! Eve has already given you good advice about getting some helpand I cant add to that except to say make sure you insist on help , you are more than entitled to it!! If you can keep working I am sure it will help you both in all sort…[Read more]

Hi Only me!

Can't offer any suggestions but just wanted to send your Mum my love – she is a very brave lady.

Mavis x

Hi!

Love to all of you on these Trials. Do hope doses continue to be tweecked so thzt side effects are minimised.

And Bridget,

So glad they have finally agreed to the treatment. All best wishes for this next stager. Let's hope it is as successful as the RT.

Much love.

Mavis x

Hi Craig
Just read your post do not know if you have looked at the financial side of things,but i found this a great help,just to have someone come in and do some heavy stuff,worth looking into,Slim gets attendance allowance as over 65,but Etta at 54 should qualify for independent living allowance plus carers allowance.It means you can go to…[Read more]

Hi Eve and Sue well got it sorted today I will be starting on Bendamustine, Thalimode and Prednisalone ( just the same as Dex but reccommended with these two drugs) in a weeks time So although I am not on a trial , my consultant believed one of the trials has been stopped due to blood counts not recovering , not sure which trial ) I will be on…[Read more]

EXERCISE FOR PEOPLE OVER 6O

I,ve tried this and it really works !

Begin by standing on a comfortable surface with plenty of room either side.

With a 5 lb potato bag in each hand extend your arms straight out from your sides hold them there as long as you can.Try to reach a full minute,and then relax

Each day you,ll find that you can…[Read more]

Hi Sue
Nice to hear from you,did not think I would get any replies ,so glad you proved me wrong.Must state from the start Slims is not in this position but I have no allusions,that if the Velcade does not work,which path we will be travelling.
I am not shy,in terms what the future might hold, my attitude is the more you know, the more chances…[Read more]

Hi Anna
You have come to a good place for Information and support,so may i say welcome to the club.
My husband is on Velcade,with the added complication of not knowing if Velcade is working until bone marrow taken,so bloods is the only way of telling us about his general health I get results at the start of each cycle,and it just helps me to…[Read more]

Hi Everyone
I would agree ,we need to talk about different hospitals and the general treatment we get concerning cancer it does vary from trust to trust also what drugs you might be entitled to depends on were you live.hence postcode lottery.
When you consider that myeloma is only 1% of cancers and bence jones kappa light chains is one of the…[Read more]

Hi Anna welcome and sorry you have found yourselves members of the mm club. Its great that you are supporting your dad , I am sure he finds it invauable , but it must be tough on you especially with a daughter who has health issue too Please dont feel guilty if you cant always keep his spirits up ,sometimes the down times happen whatever we do !…[Read more]

Hi everyone this post has really been interesting , the differences in our care and hospital resources amazes me in this day and age . I believe we all should have reasonable access to specialist cancer centres to level this out .Recently a consultant at my local hospital was surprised that Ichose to travel to London rather than be treated locally…[Read more]

Hi Jo
Nice to hear from you, yes in the camper only way I can get Slim away,only going local at the moment,mainly so I can take the car it just a change of scenery takes your mind off things.
Decided to get someone to decorate as if I start it Slim will insist on helping,so clearing thing this week,and going away for awhile,painting and new…[Read more]

Hi Everyone
I can understand how you ladies feel about the menopause,I had it forced on me,they had to remove my ovaries although I was older,Did not like the idea but as I had trouble with one said the other one could get a growth on it,once i got the all clear never looked back,Lot of the tiredness went away so its not all bad,gave me a new…[Read more]

Hi
Nice to see you are doing well Bridget,ans to see that you Sharon have finished your Velcade,just looking at the way people have responded to Velcade, Dai not sleeping you Sharon tired out Slim not sleeping and no side effects,what makes the same treatment re act differently on people.
Waiting till November for a PET scan is a long time,when…[Read more]

Hi Everyone
Yes Dai it is a postcode lottery for treatment ,and from what I am hearing Nottingham does seem to come out tops.
East Kent is lacking lots of things,some patients with other forms of Cancer have to travel as far as Maidstone for specialised treatment around 65 miles one way,A friend of mine had to do it every day for a week,
The…[Read more]

Dear Julie
May I add my condolences to you and your dad.
Thank you for letting us know as so many people just go off site and we never know what has happened to them.
So glad you mum had the passing she wanted in her own home with her family with her,it must be a comfort to you both that your mum passed peacefully.
Kind Regards Eve