[sallylewis1Participant]

hello my name is sally i am 51 yrs old .. i was diagnosed 3 yr this october . i have had stem cell transplant and 5 weeks ago found out i had relapse so now back on chemotherapy ,i go to local hospital x2 week for velacade have two weeks then ten days rest and then another cycle .. im not taking the relapse so well as i was just thinking i was gettin there .. does any one else find that no matter how hard you try you cant walk as fast as did before? also is any one else havin velacade . the good news is my paraprotien has gone down from 28.6 to 18 since on it but i get really depressed my Mcmillian nurse gave me details of this website i dint know exsisted hopin it will help talk others like me xx

[mhnevillParticipant]

Dear Sally

Welcome to this Web Site. I am sure you will find it a great help especially as you are naturally feeling down at the moment. I'm so sorry you have had this relapse. Of course you would have hoped for a longer remission, but it is good that you are responding well to Velcade. Think, three years ago you wouldn't have automatically been able to have it because of funding, so that's one good thing in your favour.

I have only just started CDT but know there are lots of folk on site who have had very good response to Velcade.

All best wishes.

Mavis

[BADGERParticipant]

Dear Sally

Welcome to this web site it must have been a big shock when you relapsed
I think its something we are all waiting for it feels like the sword of damacles hanging over me and I know I will be still shocked when it happens
because I think we just hope it will stay away I have not been on Velcade but I expect that will be my next treatment Good luck
Regards Jo x

[tomParticipant]

Hi Sally

A Warm welcome to the site 😀

Sorry to hear you are back into MM and need more treatment.

I am not on any treatment I had my SCT in dec 09 but am sure people in the group are on the same as you and will pop in and give you advice.

Keep Strong am sure you will soon kick the MM back 😎

Love
Tom "Onwards and Upwards" xxx

[EvaParticipant]

Dear Sally,
Hi – this is Eva. I was a similar age to you when diagnosed. I've also relapsed and it was a shock at first, especially as I had over 70% plasma cells in the bone marrow and my arm broke. It was also more difficult to monitor my disease as I stopped secreting much paraprotein, so I could have a very low reading, and yet be seriously ill.
The good news is that I've responded to treatment. And yes, I can't walk as fast as I used to. Just before I relapsed I was able to jog every day but I couldn't run at full speed. Now I'm on Thalidomide and I can walk but my heart pounds and I'm a bit dizzy. When I'm on dex, I'm quite disabled when I go through the dex withdrawal. I haven't tried Velcade yet. I really have had to re-invent myself – to develop a new identity. It's been very difficult as I was always used to working as a teacher and earning my own income. I've found that now I can be a photographer, an artist, and a cook. I can also read a lot. I've had to really push myself to develop an artistic side but it's been worth it as it can be very engrossing to be working on a new painting. I still grieve for the old me though. The worst time is when you wake up and realise that the person you were in your dreams is no longer there. I think it's really important to do things you couldn't do before as a kind of 'compensation'.
Good luck,
Eva

[sallylewis1Participant]

aaaaahhh thankyou all for replying . i hope we can remain strong friends through this because we know how much means to have a friend right now .. i certainly say to myself what happend to the old sal but she in there somewhere .. i go for my velcade again tomorrow n again friday then have my ten days off .. i go to clinic 14th may so i shall let you know how get on hopefully my pp will have gone down some more .. im always worried incase it goes up though i really must ask if i remember if it can . so much to remember isnt there ?? thanku all for gettin back to me i dont feel alone now xxxxx

[tomParticipant]

Hey Sally you aint alone now you have joined our motley crew. and am sure we all know how it feels too many Q and too many forgot to ask its? put it all down on paper as the days go on and add as you come up with something you feel you need to know.

And Trust me That "Old Sal" will soon be back with a vengeance.

Love

Tom "Onwards and Upwards" xxx

[Author]

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