[DaiCroParticipant]

Well spotted Eve, I missed it first time round but you managed to sneak your news under the radar Jo!:-0

So, spill the beans about your relapse and your new treatment if you please. I know it's not easy and as positive as I may usually be, each relapse (I've had 3 up to now) has knocked me for 6… one into the outfield, one into the stands and one right out of the ground… I couldn't find the last one and had to call for a new ball. Anyway, enough of the cricket analogies… I'm no big fan. :-/

in your own time.:-)

Much love 🙂

Dai.

[mhnevillParticipant]

Hi Jo

I'm glad that DAi spotted too that things aren't all well for you. I had noticed it in your posting to me and was going to respond. I have always been so encouraged by your postings.

Do hope the new treatment works very quickly so there is no more kidney damage. Also hope the side effects aren't too bad. Are you still able to carry on life nearly "as normal" or are you bound to lots of hospital visits?

Lots of love.

Mavis x

[scott9Participant]

Hi Jo

I hope you are coping OK with the new drug regime. I didn't do very well with velcade so I can only hope you have more luck. Keep fighting and keep going. You are an inspiration for me and probably a lot of others as well.

Good luck

Scott

[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 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 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

[wendyduffieldParticipant]

Hi Jo

sorry to hear about your relapse, that must be hard to deal with, but it sounds like your medical team are on it pretty quickly because of the kidney damage. Hope the treatment does the job and take care

Wendy x

[DaiCroParticipant]

Hi Jo,

3 years 6 months from your CDT alone… that is impressive.:-D

I have said on here many times that my biggest regret of my treatment was not holding out for my full remission from the CDT treatment. 🙁

My consultant said it was 'a no brainer' to go for my SCT after my CDT but due to my Hickman Line infection which made me Nuetrpenic for a few weeks and messed up the timings for my Harvest but after 6 months I was still in 100% remission from my CDT and feeling healthy and well with very good mobility (after arriving from Wales 10 months before wrapped in 2 duvets and having to be carried from the car into our new home where I couldn't walk more than a few yards at a time). My light Chains were at 3,500 and the CDT cleared them down to 0 after only 2 Cycles… I had 4 Cycles in all and felt like a new person.8-)

I wanted to wait for the CDT remission to show the first sign of relapse before going through the harvest and SCT but as said my consultant wanted me to have my SCT straight away… who knows? I might not have got 4.5 years but a year to 18 months would have done for me, seeing as my SCT only lasted 10 months (after the Prof gave me a prognosis of 3 to 5 years)… so regrets… yes indeed… but I didn't know what I know now and Janet's face when the consultant urged for the SCT swung it for me. 🙁

I hope that Velcade works well for you and gives you a remission to match your CDT treatment.8-)

Dai/

[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]

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

[HelenParticipant]

Dear Jo
Sorry to hear about your relapse, but good that you are still so supportive and still getting your hair done. Hope the velcade works well.
Love Helen

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