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]
eve replied to the topic Christmas in the forum Carers 10 years, 11 months ago
Hi Everyone
Nice to see everyone getting in the Christmas spirit,we have already started eating the Christmas goodies,so might have to buy some more
I am still looking for some of the Christmas decorations???,I think Slim has hidden them away!!
He has a weekly visit for bloods,plus if he needs platelets or bloods another visit,a visit for BMB…[Read more]
eve replied to the topic It's Back in the forum Treatment 10 years, 11 months ago
Hi Tom
I can tell you lots of hospitals do not do Pet scans ,Babs told me the reason why is the amount of rays it has to use,this explains why Slims consultant is against Pet scans,he says it will not tell you what is going on in the Bone Marrow,but when you have no firm readings for PP or light chains,it’s a long time to wait between BMB,Slims…[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
tom replied to the topic Back exercises in the forum Treatment 11 years, 6 months ago
And a Thanks from me Alex, I always wondered what is the best way to help bones when they are dodgy as my Grandkids call them.
Tom Onwards and Upwards 😎
tom replied to the topic Article on coming treatments for myeloma in the forum General 11 years, 6 months ago
Thanks for the Link Tom will have a read Lata
From one Tom to another, Onwards and upwards
tom replied to the topic Questions asked in parliament in the forum General 11 years, 6 months ago
Hi Eve
Well for me I think NICE has got too tight a hold on the why's and wherefore of peoples treatment.
I don't know how many are on the NICE panel nor how much they get paid?? but that must be coming off the central funds, I say let our Dr's and Consultants say what treatment is best for us.
Tom Onwards and Upwards xx
eve replied to the topic Questions asked in parliament in the forum General 11 years, 6 months ago
Hi Dick
It's not just sad,it's wrong!!
The fact is the treatments involved are excellent plus the best for most Myeloma patients. New patients in the right post code have the avaliblity of trials,but the patients that are not responding have little choice the consultant has no choice.
My husband had on trials MX1 was randomised for…[Read more]
eve started the topic Questions asked in parliament. in the forum General 11 years, 6 months ago
Hi Everyone
An MP asked questions in parliament this week concerning treatment of cancer patients,consultant involvement plus NiCE involvement in making decisions about the treatment of patients.!!!
He was concerned about the fact that if consultants decided that the treatments laid down by NICE was not the correct treatment for a…[Read more]
eve replied to the topic Lightly chained to the Roller Coaster Ride in the forum General 11 years, 6 months ago
Hi Helen
Good to here you are being pro active as young Tom would say, I would gladly have a bet with you,they will still make you wait,they know best attitude !!!!!
The Velcade takes so long because it ends up going to five different departments and if there not on the ball,or forget to send it to next department,!!! And as you say they…[Read more]
eve started the topic Myeloma Bubble. in the forum Carers 11 years, 6 months ago
Hi All
Well we are off for a break,taking a bit of a chance,but I do not give a dam
The last couple of years have been no picnic and at times very stressful, Tom talks about having a chemo brain,I do not think you can expect anything else,2 chemo treatments then SCT,little remission,the roller coaster starts again.
We have decided we are…[Read more]
eve replied to the topic ?side effects of long term use of Bonefos ? in the forum Side-effects 11 years, 6 months ago
Hi Margret
Welcome,
Bonefos question I cannot help,but I was surprised you have been a drug so long,you do not give a great deal of detail,have you been Diagnosed with Myeloma or are you looking for an illness for symptoms????
With the drug you are taking plus quantity and length of time,it must have some effect,why have you been on them…[Read more]
eve replied to the topic Smelling the bluebells in the forum Off topic 11 years, 6 months ago
Hi Maureen
Good to hear from you,it will do you both good to get away from hospital,I use to sneak Slim out a lot,as he hated the hospital and they had no day room,We use to spend a lot of time in the chapel .
I married Slim after 30 odd years together,are anniversary is 24 May married in ITU,we tried for 14 February but Slim was in…[Read more]
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]