Hi Ann

Sorry in delay in reply :-0

I think my wait was because my Dr missed me and sent another patient when it should have been me (he got told off though 😛 )then I had to wait for a bed to be free at Hull, as you know it all worked and am still kicking though not as hard 😎

God Luck with all yours.

Love Tom Onwards and upwards xx

Hi Skyblue

I am sorry to read your Grandma has been told she has MM and I hope the treatment is kind to her.
I also think this MM stuff is passed on I have told my three sons if they have bone pain go to Dr and tell them about Me and Ask for Blood tests.

Good Luck to you and your Grandma.

Love Tom Onwards and upwards x

Hi Helen

Yes its work but not hard work to be fair as I have been looked after like a long lost Son at my workplace.
As for driving yes I did and still do after my SCT in 2009 I had to go back to hospital every week for bloods and a check up and I drove to and from Hull 😀 , even after my BMB at 100 days I took a Friend with me to drive home…[Read more]

Hi Sarah
Gosh you have your hands full I can see, and am sure its stressful for you all.

I hope you take some time out for yourself?? as you will need it.
Congrats on the New baby they always bring an extra sparkle to people don't they.

Keep well and say Hi to your mom for me.

Love Tom Onwards and upwards xx

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 Mavis,Tom and Eve,
Thank you all for lovely welcome. I am still finding my way around, but I kep popping back on, which is a good sign!:-)

The sun is out today, which always make one feel better.
hope all is well will you all today.

Karen xx

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 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 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 Tony,
Just spotted this!
have to quickly reply and agree the staff are great!:-)

take care
Karen
x

Hi Michele,
Thanks for taking the time to reply. I am finding this a lovely friendly site. It is good to hear from people who know how it is. I had coffee last week with a girl from work, who said I look really well, which is nice to hear, but because you can walk etc, people think I'm cured (touch wood my kidneys have been ok this far). I am…[Read more]

Hi Mavis,
I am new on here and still having a look round. Had to reply to this and say here here, to being thankful!:-)
Take care

Karen
x

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]

Good read, I would like to hear the interview.
Good news about Red wine 😀