[BADGERParticipant]

hello John
i have regular infusions of pamidronate once a month no real side effects a bit achey at first but after that no bother
I hope she does well this medicine may help keep MM at bay for a bit
Regards Jo

[BADGERParticipant]

This sounds like good news Dia

keep it up this might be the one to give you a bit of drug free remission
Had three days in hospital this week Geoff took me into A&E 5 o'colck in the morning with a temp of 39 3 days on IV anti B's bad chest infection started with a cold and got worse a lot better now I usually get a winter cold but was probably worse because of the chemo which has been stopped last week and this so i can get better
LOVE jO X

[BADGERParticipant]

hi Stevo
CDT was ok for me had a bit of PN in my feet two outer toes on each foot went very numb but not painful so i could live with that and at night it gave me a good four hours sleep even on the DEX time, doesn't suit everyone but it did me
Keep well;-)
Love Jo x

[BADGERParticipant]

Well done Stevo

lets hope you have a break after eight or one over the 8! i have had a temporary break from velcade been in hospital with a chest infection temp of 39 and all that, after a few days on IV anti b,s nearly back to normal as for MM Murky Mud Blood disorder from the depths of hell come to mind:-
Keep well love Jo x

[BADGERParticipant]

hi Phil

sorry you have had a bug 2 years well done keep it up we need good news
Love Jo 🙂

[BADGERParticipant]

hi Steveo

my kidneys were working only at 20% when we discussed SCT they still are I was told there was every chance with the chemo that went along with SCT it would probably put me on dialysis I didnt want to take that chance so no more was said hope this helps you
Regards Jo

[BADGERParticipant]

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 to say there is a lady in my support group who has been on Revlimid for five years our MP fought to get it for her in the first place as nice hadnt approved it then she is now on a half dose and no sign of PP,S so this gives me a lot of hope especally about new drugs in the pipeline
Keep fighting:-)
Love Jo x

[BADGERParticipant]

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

[BADGERParticipant]

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 in Hb so have had to have some blood hope Ian gets on well with this
Regards Jo x

[BADGERParticipant]

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 especially if i see a young registrar they are very gungho about dialysis like its there mission in life to get me on it I have resisted it for 4 years now so just keep fighting on:-P
Love Jo x

[BADGERParticipant]

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 four hours my bloods held up and i didnt get many infections which was a real bonus we are all thinking of you all your cyber friends I will say a prayer for you a big
Warm (((hug))
Love Jo x

[BADGERParticipant]

Hello Lisa and Mick

Cdt worked for me did feel low at first after treatment but soon recovered i got 3yrs 6months remission no SCt due to kidney damage had MM for 4 years and have just started velcade so be positive things will get better;-)
Love Jox

[BADGERParticipant]

Hi
Eve
Velcade not so bad if it didnt keep knocking my Hb out 2 units of blood every two weeks bit fed up today as waiting for blood but the clinic forgot to send my sample down until this morning has the cross match done at 2 oclock yesterday!! How is SLim I hope he is doing well and getting stronger and you are getting your lives back together I have not stopped getting out and about going to a folk concert tomorrow white blood cells holding up well so fingers crossed have avoided to many infections
Much Love jO X;-)

[BADGERParticipant]

Hello Deb

welcome and so sorry you have had to join us what a 50th birthday Shock I dont think any of us really get over the shock UCL Is marvellous i am there every three months attenting my local hospital lister in stevenage inbetween UCH is the best as Mathias said 15 mins walk from Kings cross or 10 mins from Euston or the 73 bus which runs every few mins good[b][/b][i][/i][u][/u] luck with your treatment i have had MM for 4 years so live does go on 🙂
Love Jo x

[BADGERParticipant]

Hi Wendy

I do hope its only a blip I have been having velcade last two months as my free light chains were rising if my kidneys had been normal they would have waited a bit longer as pp were only 8 but need to protect whats left of my kidneys so if no other damage they may just moniter you for a bit
good luck for Feb
Love Jo x

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