Hi Lynda,

As I have said elsewhere, I see Velcade as a bit of a terrier… set upon the MM to bring it to heel… a couple of cycles might not seem much but as I understand it that is where the biggest drop occurs… in the first two cycles… it certainly did for me, dropping my kappa light chains (Bence Jones Myeloma) from 196 to 13 in a 6…[Read more]

Hi Susie

Thats Good News for you then, the four month check is good.

Keep strong and well.

Great Job 😀

Love Tom "Onwards and Upwards" xxx

hi Teds
sounds interesting I hav'nt got a kindle I wonder if it could be down loaded on line
Hope you are keeping well:-)
Regards JO

Hello Tony
sorry you have had to join but welcome You will find much help and advice here as well as moral support the myeloma help line is invaaluable they are able to answer most of your questions good luck with your journey
Regards Jo x

Hi Tom
Thanks for info,do not have a kindle but do have an i pad ,so will look on there.
Good to see you are doing well,try not to worry about smm.why worry about it if you cannot do any thing about it,Ask for an I pad for next Christmas they are amazing. Love Eve

Hi Wendy
I thought the Myeloma X1 trials were world wide with all data being combined and results published world wide,to come up with results that will eventually be accepted as given results of CTD against RCD.May be I am wrong.Eve

Hi Tony,

I am sorry that you are here… but now that you are you might as well make the best of it.:-|

Looking forward to getting to know you.:-)

Regards

Dai.

Hi Teresa
I had problems posting that picture,I tried one of Slim and me sitting together,and just got his ear and mine,resorted to dog as only picture i could fit in,there are instructions on how to do it at the start,the web team will help you,you can contact them by E Mail,or someone reading this might come on board with a solution.
I get…[Read more]

Hi Andy
my local hospital is Canterbury which is 15 miles away,but the nearest hospital for SCT is kings in London. That is were the problem lies for most people on the SE Coast,but as I said my daughter lives nr Sevenoaks,so Camping on her drive,I wonder how much she will charge me:-/

I do not know if its any help,Slim had low potassium ,and…[Read more]

Hi David,

I was thinking aloud because I couldn't sleep (too excited about my Dex dose this morning no doubt).

You said: [b]'At the end of the day I cling to the hope that the person sitting opposite me in the consulting room has my best interest at heart AND knows what he/she is talking about '.[/b]

I must say that I have no doubt about…[Read more]

Hi Lynda

Good to hear things are OK with Pete,I think we all feel the same,just want a result and an ending,but it is early days for Pete.

I know he will have to go the hospital more,but if it works!!!!is Pete having sub cut or infusion???,Slim had to go,for blood test morning then infusion afternoon,the actual injection takes all of 3…[Read more]

Hi Jo
Do not know Skaithos is it mainland or a Greek island,only been to the mainland once,we have always said we would do Cyprus with Motor Home,alas one of the many things on are list:-(
Just so pleased for you,after the scare of you might be needing treatment again,make the most of it.8-)Love Eve

Hi Wendy

Yep when you get MM you are never the same but you look like your Immune system is fighting it so thats good, as for me mine has been a cough and chest infections by the bucket load :-S but I fight it so am happy 😎

Hope your soon better Wenday

Love
Tom "OInwards and Upwards" xx

Hi Lynn and pete

Ye its a bugger when the MM tells us what to do or not to do :-/ am sure Pete's "Bring it On" tude is going to stand you both in good stead 😎 I hope the iccl beggers are soon moved and SCT is sooner than you think 😀

Love and Hugs

Tom "Onwards and Upwards" (hope it made you smile again 😎 ) xxx

Hi Tony
My husband Slim is on the Myeloma X1, he got the CTD side,because of his fitness he was on the intensive pathway.
I can only tell you to listen to your body,if you do not feel well, do not think you can cope with it,make sure you phone the hospital for advice,its a very hard call and you do not want to bother anyone,but it is very…[Read more]

Hello Eve

I have the all clear this month to go on holiday so we have booked up an 11 night holiday on Skiathos we go on the 4th of may really looking forward to it
Regards Jo x

Hi Dai

We bought are first van an old vw,because we had two old smelly jack russels, and having a guest house myself,did not fancy staying in one.First major trip was 6 weeks to Spain,wish we had done 3 months,that must be over 20 years ago. We now have a Concorde Charisma,will be living in it,when Slims in hospital for a month.
Have been to…[Read more]

Hi Eve,

While I would still like to go abroad I must admit that the idea of a motor-home, and the freedom to go where the mood or weather takes me, is exactly what I need right now. Every time we go to the hospital we have to pass a large caravan and motor-home retailer. We haven't stopped for a look yet (and I can't afford it anyway) but the…[Read more]

Hi Susie

Ye its a daunting thing this MM, but I said that now i have it I will do my best to keep it at bay untill they find [u][b]"The Cure"[/b][/u] and am sure they will 😀 take one day at a time and to be honest I found it better tocry in the shower that way no one seen my tears8-) as am sure you will shed some BUT we have some great folk…[Read more]