tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 7 months ago
Hi Vicky and Colin
Your wayy too kind I just do what I feel is best, not just for me and mine but all of us Mm folks, as I have to admire to being a iccle bit selfish
tom replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 7 months ago
Hi David
Sorry your SCT hasn’t been the success you/ we wanted but I have heard that it can get there in time ?!, good luck with the Maintansnce regime and hope your soon into remission.
Hi Keith
Well hope the throat gets no worse ??, gosh you are brave staying at home I was pleased I was in hospital during all mine and am pleased I will be…[Read more]
tom replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 7 months ago
Hi Helen
Ye the Dex has it’s bad bits also lol, ye but I can’t knid of later in the day as I am at work and what will my gaffer think lol.
Yes it would be good to have SCT over and done with and recoupe in the warmth of the summer, mine was winter in 2009 and it weren’t good cos I really do feel the cold now.
Do the race is now on and we are off
tom replied to the topic Starting treatment tomorrow in the forum Treatment 10 years, 7 months ago
Hi Andrea
Well good luck with it I was on CTD in 2009 and had to pack in work half way through my third 28 day cycles as I was wayy too tired by then had about a year off work that let me have my SCT in December 2009, got four years remission out if that. Just take one day at a time it’s a doable but it has it’s moments stay strong and you will…[Read more]
tom replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 7 months ago
Hi Keith
Yes the Dex keeps me awake but it will only be for last nite and the Velcade (if it’s same as last five lots) and will need aka ram to wake me up.
The mouthwash like David said should be supplied by the hospital and don’t forget use it near as much as you use the loo and some. That extra extra use helped me no end.
Good luck with it…[Read more]
tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 8 months ago
Bloomin half post again but am sure you all get my drift lol xxxx
tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 8 months ago
Your all more than welcome and you all are my inspiration, it’s not easy comming onto a site like this Mm am sure but for me it helps reading your good posts and we have many on here that are Onwards and upwards who also Vabyte and do whatever it takes and also know that every day is a gift.
So you all keep me going also
tom replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 8 months ago
Morning Helen
As you can see by the time of the list I had my Dex yesterday lol.
I think you would beat me if ur July but am gonna race you anyways it gives us some thing to look forwards to dunt it.
I would think for me more autumn early winter for mine beds permitting.
Now the race us on
tom replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 8 months ago
Helen
Do you have an idea when you will be doing yours ? Have you done the harvest? I forget too much these days so forgive me if you told me ha ha.
I am building up to my 2nd transplant all being well this year.
Had first in 2009 so remember what it was like and don’t have a problem doing it again as it gave me four years drug free and that…[Read more]
tom replied to the topic My Stem Cell Transplant Journey in the forum Treatment 10 years, 8 months ago
Hi Keith
And all the best for you, don’t forget use that mouth wash like it is going out of date I did with my first SCT in 2009 and South was not too bad, am due another one this year when the Velcade sorts the Mm out.
One day at a time Keith
Tom onwards and upwards x
tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 8 months ago
Hi you all
Don’t know where the time has gone ?? Moved home in December (13th) and it’s been all go one way or another.
Anyway my treatment”…… On my third week of my third cycle and all doing well, just feel tired more than I used to but still manage to clock on at work and go out for a pint or three. Sleep like a log now except on my Dex…[Read more]
tom replied to the topic Good Remission after 5 years- do not give up in the forum Treatment 10 years, 8 months ago
Near half of my post missing ??? HELP lol x
tom replied to the topic Good Remission after 5 years- do not give up in the forum Treatment 10 years, 8 months ago
Well done David and your team, and yes you are correct it’s never too late and you more than most know that am sure, you have been dealt a bad deck so far but it was worth the wait hope you don’t do your back in doing a wee jig in celebration
tom replied to the topic Velcade treatment in the forum Treatment 10 years, 8 months ago
Hi Jane
And well done on your length of remission, I had CDT on my first treatment in 2009 leading up to first SCT in December same year and got 4 years out of that, I am now on Velcade (subcutaneous ) every Monday with 10 wee Dex tabs lol. My feet know am getting this treatment I have had nine Velcade injections so that makes me having 90 wee…[Read more]
tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 8 months ago
Hi Charlie
Doing great thanks, I am now on (today) my third cycle of the Velcade and the dex and to be fair it has been a bit strange to me ?? .
The first few weeks after taking my Dex (take that every Monday ) I lost my sleep pattern for four days then Friday hit the preverbal brick wall then normal for the week end to start all over again…[Read more]
tom replied to the topic Good partial remission 100 days after SCT? What does that mean? in the forum Treatment 10 years, 8 months ago
Hi Andrew
Well done and yes you should be pleased I had mine done in 2009 and at the start it was 100 but as the months moved on I got the all clear and spot on and am under the impression it’s near the norm, stick with it with a big grin and a skip in your step.
Good luck you are well on the road to remission
Tom onwards and upward x
tom replied to the topic Pregabalin -Lyrica advice /info shingles in the forum Treatment 10 years, 8 months ago
Aww bless you Frank well I can’t help as yet but just wanted to wish you luck with it Frank I hope someone will pop up and give the advice you both need.
Love Tom xxx
tom replied to the topic Happiness- 42 days post SCT! in the forum Treatment 10 years, 8 months ago
Carol I award you an “A” also well done you, it’s great news, and as for your consultant be like me Carol if he is happy am happy.
From one onwards and upwards to another have a great week
Love Tom onwards and upwards xxxx
tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 8 months ago
Hi Maureen
Thanks for that, yes I am doing pretty good on it the sleep I think has come back to me and near next to normal pattern so that’s good.
Am sure Ian will cope with the Velcade and it’s good to get away before treatment starts pewee went away before I started treatment all booked I a weekend lol.
Good luck to you two and enjoy your…[Read more]
tom replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 8 months ago
Hi every one
I am now on second cycle and just done third week of that cycle and kast week I lost sleep on Monday as normal but after that I could sleep for England ? Fall asleep on sofa wake up and go to bed it was wayyy too easy to sleep, so let’s see how this week falls.
Went to Scunthorpe General today and talked for a few seconds to a couple…[Read more]