Hi Joanne

I also am sorry you have had to joint this site, but trust me its the best place for help/advice and folk to listen to us when we need a rant.
As Kay says its an individual illness and not one thing suits another.
Take the pen and Paper and make notes its not going to be easy to remember everything, also ask the Consultant to send…[Read more]

Hi Kay

Just wanted to send good wishes. Hope your wigs prove a knock-out!

Love Mavis

Hi Peter

Don't know if you read the American Site "Myeloma Beacon" but they were sugesting that it isn't licensed for all US yet, but said UK would follow. You do wonder why things take so long when it is obviously going to make things better for all of you on Velcad.

Take care.

Mavis

Hi Dai

I can really feel your frustration. No, it is not too much to ask for that someone reads your feed-bcak sheets and has a sound conversation with you. It doesn't sound like rocket science you are asking for. And is it really that Drs are so busy? I don't know, but do get the feeling that Drs find time to do what they think is…[Read more]

Hi only me

I've just caught up with these posts. Don't be down hearted about your Mum not progressing straight to SCT. Not everyone has a long remission following it and the immediate effects can seem pretty horrid. At least it isn't ruled out for her. For myself, I am in no rush for any treatment and have decided, at 66yrs and with other…[Read more]

Hi David

So pleased that things are working out for you and that the SCT worked.
Enjoy the next three months and forget you are someone with this dreaded MM.

Mavis

Hi Peter UCH is a London hospital I am also a patient there. Several of us have have asked our docs about the sub-q Velcade and apart from them being aware of its use in US no good reason has emerged as to why we are not !! It is so frustrating as this would make the use of Velcade so much easier for us . Have you ever had a PICC line? It is so…[Read more]

Hi Jo I am sorry you didnt get the remission with those drugs, it must be very scary for you as the options become limited, I know I dread it Sorry I cant help with the intermittent Melphalan ,have you rung the nurses on this site their knowledge of up-to-date treaments is excellent Good luck with whatever treatment you have next love Bridget

Hi Jo Min and Sarah thankyou all for your good wishes its you lovely people that keep me going! Min how wonderful that Peter has turned a corner at last it can only be onwards and upwards now!!Love the new hairdo too Srah your holiday sounds just perfect to get away from it all and I bet Gordon was pleased you went , I know I feel so bad that…[Read more]

Hi Angelina I am so pleased John was able to be with you and his girls at home for a short while and it went well Joining everybody else in crossing fingers toes and anything possible that he gets home very soon Angelina your strength and positivity are amazing I hope you can find some time to look after you as well love to all of you Bridgetx

Hi Christin

Yep I know all about takin three rather than one step:-D but as time went on I knew (nearly as much as Elaine) that I had to take it Easy so am sure your Dad will also get it Lol.

Love from a mere male 😎

Tom "Onwards and Upwards" xxx

Hi Bridget

glad you are back on line so sorry they have not got on top of your pain
it must be awful to be in pain all day and you dont want to wiped out either it sounds like making a cake but they havn't got the mixture right yet I really hope they do soon, keep in touch love Jo:-/ 😉 x

Hi Vicki

Yes it made me weary and yes strugled to sleep at the same time (strange that Dex) but I got sleeping tablets and took them sparingly as i dint want to get hooked on them 😀

Am not sure if the Spondylitis ur Dad has is connected to the MM but am sure someone will pop on and advise 😎

I am just having four weekly Zometa…[Read more]

Min

I agree with bridget perhaps the hopital should have offered peter councelling as well as drugs all these doctors look after the body but not the mind, I am really glad he has perked up a bit to make you lunch this could be the start of a new mindset with him hopefully he may become more positive can someone come to your house to give you a…[Read more]

Hi Yamyam

Sorry to see you had to join but you have come to the correct place, and sorry to read you felt let down by the NHS 🙁 but now they have your Dad on the radar all should flow nice,as for me and only me I would go for anything to help put this dreaded MM on the sidelines until a cure comes along so for me I would do it.

Good Luck…[Read more]

Hi Min god to hear Peter has realised you need a bit of looking after too , even if its only a sandwich its the thought that counts. Perhaps he is worse this time because he is more scared , angry than the first time , I know relapsing brought up a whole load of emotions for me the worst being feeling helpless! I am struggling with these new…[Read more]

Hello Angelina

My fingers are crossed too I will send you one of my guardian angels I am sure they will smile on you
Love and a big ((hug))
Jo x

Kay

good luck at the hospital dont worry too much about the hair the shaven look is all the fashion I hope all goes really well for you and the Velcade knocks this devil out. When I had chemo my hair got really thin so I had it cut really short more in a boys style left it that way will save time next time always been a bit fat so not much…[Read more]

Hi Angelina

How are things going with John and yourself,just thinking about you this morning,just thought i would pop into site to see how you are getting on.
love Eve

Hi Kay

Good morning to you all,another lovely day,hope you do not spend to long in the hospital Kay.Wig or no wig,fat or thin,you still will be lovely,its what,s in side that counts.
wishing you well.Eve