tom replied to the topic Remission in the forum Treatment 12 years, 7 months ago
Hi Tina
And a well done young lady,am sure you will get a Long Remission out of your treatment, good luck Tina.
Love Tom Onwards and Upwards xxxx
tom replied to the topic Update on kev in the forum Treatment 12 years, 7 months ago
Hi Liz and Kev
Yes Elaine and I are doing great Thanks 😀
Kev will have same as Elaine the "Tattoos" for his R/T Elaine had 25 sessions of R/T in 2008 and did pretty good with it 😎
Its like your rink here in Sunny Scuuny am afraid, I just hope the dog dunt pull me over when i take him for a walk Lol.
Good Luck and am sure the RT will…[Read more]
BADGER replied to the topic Round 11 RCD in the forum Treatment 12 years, 7 months ago
Hi ANdy
Superstition or not fingers crossed that this treatment is the one for you as you must of read SCT is not now concidered an option by a lot of at least American doctors less is more! SCT was not an option for me either so i am hoping that first CDT which gave me 3yrs6months remission now on Velcade Sub Q hope it works just as long have…[Read more]
tom replied to the topic Second anniversary visit to haematology in the forum General 12 years, 7 months ago
Hi All
Well who has put a Great Photo on 😀 you both Look great and yep you scrub up real well (not that either of you need to )
Love iccle ole me xxx
tom replied to the topic Update on kev in the forum Treatment 12 years, 7 months ago
Hi You two
Well I hope he can get infection kicked out and get on with treatment,its bad this time of year no matter wher you are some one is infected with somthing and are only to keen to pass it on 🙁
It looka like the revlimid Is working 😎 so it is good if infectios is sorted.
Get well Kev and keep away from those with germs…[Read more]
eve replied to the topic Another new 'member' in the forum Under 50s 12 years, 7 months ago
Hi Rob
Do not worry. About the tube it is the least of your worries,one would have been fitted later for SCT it actually makes your life a lot easier,on normal treatment they go in to veins every time often they collapse,some like my husband it takes a number of tries,so a centreline sounds much better.
If you are looking at all…[Read more]
BADGER replied to the topic Velcade in the forum Treatment 12 years, 7 months ago
Hello Maureen
velcade is not so bad as for dex i take 20mgs twice a week Ians consultant can ajust the dose if needed but its best to try and take the full dose if possible he may be able to tollerate 20mgs
Regards Jo x
eve replied to the topic Calling Eve in the forum Off topic 12 years, 7 months ago
Hi liz
Now Slims in remission and off treatment,I find I am posting less,but I like to keep up with what is going on also if you have not looked at the site for awhile you do loose track of what is happening to people,plus all these new people coming on,if they felt anything like
I felt when Slim was first diagnosed,they need lots of boosting…[Read more]
eve replied to the topic Another new 'member' in the forum Under 50s 12 years, 7 months ago
Hi Rob
Just to welcome you to the site and wish you well on your MM journey.
Wi th you being based in London you will have some of the best experts and treatments available ,we are Kent ,but my husband went to Kings for his SCT,also to. Have a choice of trails,my husband did MyelomaX1 trials,CTD randermised,which did not work,so straight on…[Read more]
DaiCro replied to the topic Velcade in the forum Treatment 12 years, 7 months ago
Hi Maureen,
I did very well on Velcade, reaching complete remission after 6 Cycles. I had to have a cannula for each infusion but it is much better these days with a quick and painless injection into the stomach… as with Jo.:-)
I relapsed quickly after reading full remission and I would have done better to have carried on to the full 8…[Read more]
eve replied to the topic Calling Eve in the forum Off topic 12 years, 7 months ago
Hi Everyone
Well we made it,and when I learn how to put pictures on here,you might see some.
Has taken a fair time to get over the flight home,at the moment Slim is doing better than me,he,s waiting on consultant for the ok,it's a bit of a worry every 2months wondering if its all ok,as Slim is one of these people that it no longer shows…[Read more]
eve replied to the topic Velcade in the forum Treatment 12 years, 7 months ago
Hi Maureen
My husband did 6 cycles after CTD failed for him,tolerated it very well,went on to SCT and is now in remission .hope every thing goes well with your husband.
Time soon passes,the worst thing was having to go to the hospital bloods in the morning then home and back again twice a week,use to look forward to the week off.Eve
DaiCro replied to the topic So Alone in the forum End of Life and Grief 12 years, 7 months ago
Hi Gill,
Sue;s last reply was on the 4th January… 8 days ago. 😐
I hope she is coping… I am sure she would let us know if there were any developments. Perhaps the DN's have arranged a few days hospice respite and she has managed to get away for a few days – wishful thinking but that would be good. 🙂
Much love 🙂
Dai.
BADGER replied to the topic Velcade in the forum Treatment 12 years, 7 months ago
hello Maureen
I am on velcade at the moment I have it Sub Q an injection once a week into my stomach on day one 20mgs of Dex and cyclophosphomide 250mgs some people have a higher dose of this but i need a renal dose(damaged kidneys) day 2 another 20mgs Dex this regime isnt so bad and i am coping well with it the only problem seems to be a drop…[Read more]
tom replied to the topic First time diagnosed in the forum Newcomers 12 years, 7 months ago
Hi Paul
A warm welcome to the group, it's not an easy task Paul but you can do it, I did it in 2009 bit rough at times but trust me well worth it.
Good Luck in your road to remission.
Tom Onwards and Upwards
tom replied to the topic Yes it has bombed in the forum Treatment 12 years, 7 months ago
Hey Keith
You know am sorry it never worked 🙁 you have been through the mill with it.
I hope the CDT works for you, just to let you know it was my first attack on mm was that and it put me into remission, I hope it works the same for you.
Good Luck with it.
Tom Onwards and Upwards
tom replied to the topic I feel so frightened in the forum Newcomers 12 years, 7 months ago
Hi Lesley
Your more than welcome, now don't forget any question you feel you need to as then fire it in here ????nothing is too much to ask you now you are here will always have an ????to bend.
Love Tom Onwards and Upwards xxx
BADGER replied to the topic Raise your hand if you hate dex lol in the forum General 12 years, 7 months ago
Hi Stevo
My belly is not very bruised only haveing Sub Q once a week so not so bad
I always take the DEX as early as poss in the morning with brekkie so i do get a bit of sleep at night no sleep if taken later in the day kidneys seem ok but have a real app next week its always like the sword of damacles hanging over me when i go there…[Read more]
BADGER replied to the topic Yes it has bombed in the forum Treatment 12 years, 7 months ago
Hi Keith
sorry to hear the treatment hasnt worked CDT worked really well for me its a much gentler regime so it may really suit you Thadidomide is a bit of a wonder drug it gave me 3yrs 6month remission and not too many side effects just a bit of Pn which wasnt so bad it also gives you a bit of sleep at night even with the DEX I got at least…[Read more]
DaiCro replied to the topic Relapsing in the forum General 12 years, 7 months ago
Hi Wendy,
Like the others I am hoping that this is a blip and your next readings are back to 19 or below.:-)
I am Bence Jones too and my treatment post relapse usually started at approximately 400 light chains. Velcade to Revlimid was 425 due to waiting to go on a trial that I just missed out on and Revlimid to Bendamustine started at…[Read more]