tom replied to the topic Diagnosed April 2013 in the forum Newcomers 10 years, 10 months ago
Hi Izzie
Well what can I say ??
I had my SCT in December 2009 and up until 2013 was in remission and drug free, so the first transplant gave me a long and drug free four years and for that am pleased.
But did I have off days ?? Yes I was weepy and yes my head was low, lower than I wanted it to be.
How did I do I cope ??? Well I fight the myeloma…[Read more]
tom replied to the topic Are we new ?? in the forum General 10 years, 10 months ago
Hi Michele
Dont worry about it being in “Stereo” as i can only hear from one ear ha ha.
Thank you and we will, you do right working your holls that way its best you can book well in advance enjoy.
Love Tom Onwards and Upwards x
tom replied to the topic Are we new ?? in the forum General 10 years, 10 months ago
Morning San
Am sure you know Fun is my Middle name so am sure its gonna be great Thanks.
I just need you all to behave while am away,I know most of you will but am sue we have some nawty ones that will misbehave while am away ha ha.
Catcha soon
Love Tom Onwards and Upwards xxx
tom replied to the topic Maintenance advice please in the forum Treatment 10 years, 10 months ago
It’s not a problem Chris and am sure it will work out well and I wish you luck I. Your decision whatever it is.
As for the myeloma we knew it would come back it’s just a when and how, am blessed with having no bone damage (that we know of) so that’s a blessing and as always it’s onwards and upwards.
Love Tom xx
tom replied to the topic Are we new ?? in the forum General 10 years, 10 months ago
Hi Dick and Carol
Well it was few weeks I was offline packing moving then unpacking, hated not getting on here as I missed you all 🙂
The young bride and I can’t wait as we are really ready for it bit of sun on me bald head will do us both the worked of good and get us ready for the next run of drugs.
Take care and stay well you all.
Tom…[Read more]
tom replied to the topic Stem Cell Collection…it's an A* result in the forum Treatment 10 years, 10 months ago
Hi Carol
Hey a well done you and your stem cells that’s the best I have heard of 😉
I collected enough for two in 3/4 hours but they put them in three bags so they gave me them all back so have none in reserve :-/ .
Am sure whatever you wear they will ask q good luck and hope your cells are not in the freezer for long.
Love Tom onwards and…[Read more]
tom started the topic Are we new ?? in the forum General 10 years, 10 months ago
Hi everyone
Has the site changed ? I have been off for a bit as we have moved home, tried to get on and it kept telling me to repeatedly log on and every time I did when I went into add to a conversation it asked me again ?? But today I got in.
Hope everyone is well and I ain’t missed anything.
The young bride and I are going away for a week to…[Read more]
tom replied to the topic Maintenance advice please in the forum Treatment 10 years, 10 months ago
Hi Chris
Well done on the remission am pleased for you.
As for the Maintanance regime I was never asked if I wanted to go on it so am not sure what I would have done to be fair.
But I gad my SCT in December 2009 and I gave had four years remission drug free which was great for us all sorry to say the myeloma has become active again, but four…[Read more]
tom replied to the topic Phosphate in the forum Treatment 10 years, 11 months ago
HI Jean and Frank
Sorry for delay but am now back on line 🙂
Also sorry to hear Frank is not well, I hopw he is soon sorted out and back to “Fine Fettle”
Love Tom onwards and upwards xx
tom replied to the topic It's Back in the forum Treatment 10 years, 11 months ago
Hi everyone
Sorry I have not been on for some time but I have been busy packing and moving home, nw settled in a nice two bed bungalow, renting it and have shoved the money from the sale of our old house in the bank, now no money worries ha ha.
Yes am sad I only got four years but happy that I have another treatment to move onto, Elaine (the…[Read more]
tom replied to the topic GCSF pain in the forum Treatment 10 years, 11 months ago
Morning Carol
Well as I recall it the more pain the better mine lasted three days, as for childbirth lol I know nothing he he.
I got enough stems out in one day took three or four hours
Good luck with yours.
Love Tom onwards and upwards xx
tom replied to the topic Our Dai. in the forum General 10 years, 11 months ago
Hi Andy and of course the family and extended family of Our Dai.
Yes I spent a lot of Today thinking about Our Dai and the strength,wisdom and knowledge he passed onto to us all even when he wasn’t so well himself.
That and all you others that helped and are still helping is a great strength to us going through our treatment.
Our Dai will be up…[Read more]
tom replied to the topic Preparing myself for my stem cell transplant in the forum Newcomers 10 years, 11 months ago
Hi Angela
Well you ought to tell my young bride to listen to cos she dunt ha ha.
Well am sure you have seen my post telling you I am going back on treatment, but I have had a great four years and am well rested for the next road to remission am just taking a bit of a detour
tom replied to the topic It's Back in the forum Treatment 10 years, 11 months ago
Hi Eve:: well am sure he said pet scan?? but we will see lol, yes i know it should give me another two ish years and am happy with that as we never know what will come next (that cure sounds good though) I have a good sprint on Eve dont worry about that and when it gets too close I will turn round and hit it head on and trust me the Myeloma aint…[Read more]
tom replied to the topic It's Back in the forum Treatment 10 years, 11 months ago
Hi folks
Thanks for your support it really means a lot.
Carol I do feel blessed four good years was more than I expected and to be honest it’s not that much of a shock to us.
I am being treated in Scunthorpe General under Dr Jalihal and the Velcade would as he said in 1998 be his first choice but at that time they wouldn’t let him.
As for the…[Read more]
tom started the topic It's Back in the forum Treatment 10 years, 11 months ago
Hi everyone
Well am sorry I have to tell you my Myeloma has kick started itself back into our life’s .
After four years of remission I got the results Thursday (5th dec) having a BMB on the 30th Dec then pet scan (date to be arranged) then in new year discussion with consultant about new treatment I will be having.
Was it a shock yes wanted more…[Read more]
tom replied to the topic introducing myself and Marc in the forum Newcomers 11 years, 6 months ago
Hi Pauline and Marc
Well a warm welcome to the forum, pull up a chair and get comfy, great folk on here that can and will help you both get through this.
Yes I got a bit "Blown up" when I first had my first line of treatment CTD then SCT all in December 09, and as of now doing great and Drug free 😀
Stay well
Tom Onwards and upwards…
tom replied to the topic After Stem Cell in the forum General 11 years, 6 months ago
Charlie & Mary
Am pleased all is well, and I bet you loved looking after the Kids.
as for the Levels I know nowt about them am sorry to say.
Keep well
Love Tom Onwards and upwards x
tom replied to the topic Anxiety in the forum Side-effects 11 years, 6 months ago
Keep on keeping On and you stay well, am sure some folk have escaped it with little side effects lets hope you are one of those.
Tom Onwards and Upwards xxx
tom replied to the topic SCT. Husband still unsure? Can anyone help? in the forum Treatment 11 years, 6 months ago
Hi Gill and Dave
Am pleased you mad your choice, and I hope you get many a year out of it.
Good Luck in your Road to Remission.
Tom Onwards and Upwards x
Well Tom my Mum started Velcade and dexy she only had two injections but it started to work, they gave it sub cutaneously not i/v as it appears that there is less peripheral neuropathy if its given that way hope it helps to know that, sorry that you have had that news now but you will kick it back again Tom and with your wonderful attitude…[Read more]
Hi Tom I haven’t made a comment for quite sometime although I read them on a regular basis. You always gave hope when you had been in remission for so long. My husband Jeff had his 1st stem cell transplant 3 yrs ago which only lasted a year.He had 6 months of velcade and then he had his 2nd transplant last November and so far so good and I just…[Read more]