[BADGERParticipant]

Hi Pat

hope you are feeling ok today had a very interesting time at the MM day in London had major speakers from the medical world there was a lot of talk about new treatments which was encourageing we paid £20 for the day there was a nice lunch and really the chance to talk to others in the same boat some people have had MM for twenty years long day a bit tiring but worth it as it was such a nice day today Geoff and i went for a slow walk in a local park today it was good to get out in the fresh air
Love Jo;-)

[BADGERParticipant]

Thanks wendy for your kind thoughts i do have a good medical team at the Lister and UCH
Love Jo x

[BADGERParticipant]

Well Dia

who knows what is the right course i made my mind up not to go for a SCT it was discussed but i didnt want to finish my kidneys off completely as it happened it has not worked out too badly so i do hope i get the same responce this time thank you for your kind wishes:-)
Love and a hug from Jo xx

[BADGERParticipant]

Hi Pat
I have a reduced regime because of the kidney failure i cannot have full strength drugs it worked ok for me last time so hears hoping it will now
my lovely husband takes me every where and waits for me took me this afternoon to my friend sons saloon she arranged for me to have a free manicure which was lovely had the hair done felt much better;-) must keep up appearences going to the MM conference in london tomorrow do you live in the south east I live in Hatfield Hertfordshire but we are being transported tomorrow with my local MM support group they have organised transport keep well:-)
Love Jo x

[BADGERParticipant]

Hi Scott

I am coping ok at the moment with velcade only once a week SubQ and a reduced dose of dex and cyclo because of the kidneys they started me early
as i was producing heavy light chains which damaged my kidneys in the first place they are still hanging on how are yours coping with the new teatment i am nto giving up going to th MM conference tomorrow in London
might learn something new have to stay positive:-P
Love Jo xx

[BADGERParticipant]

Hi Mavis
thank you for thinking of me not doing to badly plenty of hospital visits but i try to carry on life as normal dont like to give up just take a bit more care not get colds etc
Love Jo x

[BADGERParticipant]

hi Dia
thanks for noticeing me I had 3years 6months remission from CDT so i didnt do too badly my PP were only 9 they usually dont start treatment until you get to 30 but i was creating heavy light chains again which destroyed my kidneys in the first place so they started early the regime is not to bad
20mgs of dex and 200mgs of cyclo day one 20mgs of dex day two plus an anti B to prevent pnuemonia and an aciclover to avoid shingles had that once dont want it again i seem to be ok with it at the moment the velcade is by Sub Q once a week no side effects yet! so fingers crossed this works for me I hope you are keeping well saw your wedding pictures on face book looked like you had a nice day
Keep well love Jo x

[BADGERParticipant]

Hi Pat

had my second dose today app at 1 0'clock got out of the hospital at 4.30!!
my dex is 20mgs two days running and 200mgs of cyclo on the first day having my treatment sub Q only takes a minute to get the injection I wore my very bright pink jumper today very loud but fun:-P having a colour tomorrow hope my hair wont fall out:-(
Love Jo

[BADGERParticipant]

Hi Pat
sorry you are not too good lets hoe things soon get better I am just starting vcd had one lot i am having it once a week sub Q and a reduced dose of DEX and CYCLO because of my kidneys i expect we will be sharing experiences try and keep well love Jo xx

[BADGERParticipant]

wonderful news Mavis

lets hope ou get a long remission I have had 3yrs 6 after CDT just started VCD rthe MM is not to bad but i am creating heavy light chains which destroyed my kidneys in the first place so they are starting early
God bless Jo x

[BADGERParticipant]

Kerry just let it out ot must be so hard for you to see Melvin suffer so much and the children must be suffering to not knowing what will happen to their belooved dad you sound a strong person so i am sure you will get through this
Love AND A (((HUG))
jO

[BADGERParticipant]

Hi Andy

glad your readings are a bit better hopefully you will find a match so you will be able to go ahead with your SCT
kEEP WELL
Love Jo

[BADGERParticipant]

Hi NETTIE
I have been swimming a lot at my local pool go early in the morning before all the kids get in got a throuat infection once I thought it could have came from the pool but not sure just try not to get water in your mouth its a bit unconfortable but I do breast stroke with my head out of the waater
Love Jo:-P

[BADGERParticipant]

Hi Michael
sorry to hear about Jo same name as me I had cdt when first daignosed in jan 2009 could not have SCT due to renal failure it actually worked for me I was in full remission until the beginning of this year my PP's are still very low but my light chains are rising so due to my damaged kidneys I will have to start Velcade sooner than most people I think they now use velcade as a first line treatment but a couple of years ago that wasnt a licence for it
I hope Jo does well on it
Regards Jo x

[BADGERParticipant]

Hello Kerry

So sorry to hear about melvin what a shock for you both most of us here are over 50 so I can imagine how heart breaking it is to be diagnose under 40 you must be wondering what next we here are all at different stages and we dont give up i know you will give Melvin strength to get through this
Good luck Jo

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