[tomParticipant]

Good morning Mike
Hope it goes well for you I still await a start date for mine, had bloods taken to get a profile a week ago and last Wednesday so waiting to sign the consent form and get going….pleased it’s going well for you, will follow your progress….is this your first or second infusion ?

Re this forum I came off it a while ago as I posted stuff and only half of it got posted lord knows where the end half of it went lol……
Good luck and keep me informed if you can….it’s good to have a heads up….

Tom..onwards and upwards x

[tomParticipant]

Hi Mike

I will be going onto this regime in the next week or so…I have had my bloods done and yesterday went for a Pet scan, at the moment I await more information. Wish you luck with it, am led to believe it’s pretty good…Onwards and upwards
Tom

[tomParticipant]

Hi Katy
A warm welcome to you, I have had myeloma since 2009….two stem cell transplant (2009 and 2015) first I would like to say….it’s a rough ride at times BUT it’s a doable that’s for sure as I have had two….the build up to the SCT ? Take it nice and easy try and keep yourself fit (ish) as for the transplant …..”……it’s going to be rough at times but if you tell the nurses and consultants how you feel they will do their best to make it better, what advice would I give ? Well first do as your told by the consultants and nurses, take in with you your sense of humour (you will need it lol)
Use the mouthwash like it’s going out of fashion, you will crack it no problem, good luck
Onwards and upwards
Tom x

[tomParticipant]

Hi David and all you others.

Yep am still here lol, and I wasnt an SCN ha ha.

Hope your doing good David as we are at this sunny end 🙂 yes as Jean says bloods taken last Friday and results today:-)

Bit of an update on me seen as am on the forum.

Myeloma came back December last year (i got four years remission from SCT #1) was put on Velcade (subcut) with out iccle friend Dex, had that every Monday for just over three months when it stopped working so My Dr Jalihal added Cyclophasamide to the mix, been in that for 8 weeks now, so now is the time to see if it works.

Think I just might ask for a sick note today as I am getting more and more tired with the stuff they are throwing in me ha ha.

 

Take Care you all Onwards and Upwards Tom x

[tomParticipant]

Hi Marge

 

well I have been on the Velcad for 5 months now, it stopped working on month three so i have had Cyclophosamide to the mix side effects ?? am tired and weary more so as the other one was added,apart from that Not much else as yet, to be fair its ben kind to me 🙂

Good Luck with it

 

Tom Onwards and Upwards xx

[tomParticipant]

Hi Deborah

I had mine in 2009, got four years out of it and that was great, yes I was bloomin cold in the room should have taken my throw in 🙂

Mouth wash now I used bottles of it every time i went to the loo, walked past it thought about the loo I mouth washed (they will give you more lol) , cant emphasise enough to use moth wash as often as you can am sure i was doing two per hour lol, but my mouth was OK (Ish) not as harsh as some i have spoke to.

Take one day at a time and do as your body tells you, if it says sleep then sleep no matter who has come to visit.

Good Luck on your road to remission

 

Love Tom Onwards and Upwads xx

[tomParticipant]

Hi Keith

Well done you 🙂 and you can be forgiven about memory loss after what you have gone through

Stay well my fiend its all Onwards and Upwards now

Tom Onwards and Upwards x

[tomParticipant]

Hi Clover

well I think its all ben covered by the great posts above.

Its a roller coaster of a ride for your Dad am sorry to say but he will get through it, you all will, you dont say how old your Dad is ? nor how old you are ?

Good Luck to your Dad on his road to remission.

Tom Onwards and Upwards xx

[tomParticipant]

Congratulations to you Both am well chuffed for you both.

its what we all aim for,I hope Graham is now drug free for many a years its a great feeling I had four years drug free remission, we went and done what we wanted to do with no restrictions.

Get out their now and enjoy Life, once again well done and have a great time.

Love Tom Onwards and Upwards xxxx

[tomParticipant]

Hi David

Thats great  to hear ist finished but as I said when you started it ” No Rush to Use It” al keep checking and see

Take care David and stay well

Tom Onwards and upwards “Vasbyte” x

[tomParticipant]

WoW Sarah

What a photo well done you its a great one I can tell you.

Good Luck to M now its on the go, its tiring in hospital as it is let alone the regime that M is going through  and am sure you all know I wish him luck and few side effects on his road to remission

Love Tom Onwards and upwards xx

[tomParticipant]

Morning Rebecca

Not sure who will be doing the BMB Dr J did the last one and it was Ok ? Helen done two on me and I had one done in castle hill and that was the worse one .

As for the PN so far its not a problem ? I feel something but nowt to talk or write home about it was worse on my CDT just got rid of it for the darn MM to kick back in again lol.

Stay well

Tom Onwards and upwards xx

 

[tomParticipant]

Hi Sarah

Am sorry i have no knowledge of the regime your Hubby has been put on just wanted to wish you both well on the road to remission.

Tom Onwards and Upwards  xx

[tomParticipant]

Hi June

Sory to hear about your relapse,

had my CTD and Stem Transplant in 2009, but it kicked back in last december.#

I just had my Velcade (Cycle four week three)  I have Velcade, Dex and Zometa.

I am doing great with it albeit tired a lot but I listen to my body and when it tells me to sleep I sleep Ha ha.

I asked my Consultant Dr Jalihal if i could split my dex in half and was given the OK so i now take (just started this week) 5 on a monday morning prior to getting velcade monday aftenoon and will take my other 5 dex on thursday and see how that works out for me??.

Dont ask about levels or score cos I dont know mine ha ha, but am told all going great and am booked in for another BMB 12th may provisionally and hope to move sooner rather than later for another SCT

Stay well June

Tom Onwards and Upwards xxx

[tomParticipant]

Hi Graeme

Not a problem, I found out that it had come back after having my regular bloods done, but in reality am sure my wife and i had known as i had lost weight again and that for us was an early indicator.

Bearing in Mind all MM patients  differ in how they cope from one to another even when on the same treatment that said I had to go on sick halfway through my third cycle 🙁  but it all worked out.

Good luck on your journey

Tom Onwards and Upwards

[Author]

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