[sandraParticipant]

Hi Sarah I wish I had logged on earlier and read your post I would have come along as I am in Westham !! I had a coffee morning at my house on the 19th November raising £430 . I have had mm for 4 years , am 46 and have 2 teenage kids , I am still working and carrying on pretty normally after a stem cell transplant in 08 and one pending for 2012 !

Glad we are keeping up the fundraising for the east sussex area well done !

Sandra x

[sandraParticipant]

As usual gang a very mixed bag with different areas , circumstances and results . We certainly didnt get ourselves a predictable disease did we ! Thanks everyone its interesting to see the different journeys . Good luck and best wishes
Sandra xx

[sandraParticipant]

Thanks gang for all your replies , I know that 2 or 3 people on the under 50 site have had them and others have been spoken to about them but I was amazed when my Doc almost thought I was mistaken when I said this !

When I was diagnosed in 2008 he automatically tested my sister who was not a match and that was the last time he mentioned it as a serious option .

I am up to Kings next week after 4 cycles of Velcade which isnt having a whoopee doo affect on my paraproteins so it will be interesting to see what happens next ! If we can get the buggers on a downward trend it will probably be a second auto sometime in the summer .
Best Wishes
Sandra xx

[sandraParticipant]

Hi Tracey just to add a welcome to the gang , I am 3 years post diagnosis , was 43 when diagnosed and had a very successful CTD and stem cell transplant process 2008 . Loads of good advice and guidance on here
Hope you are feeling ok on CTD Best wishes
Sandra xx

[sandraParticipant]

Thankyou guys ,
I just seem to have hit a wall at the moment with the whole bloody lot . Like everyone else life is so busy and I just wish I had the energy to deal with it all . I much preferred CTD which didnt have me tied to the hosp 2 days a week and I didnt look like a pin cushion ! But I am determined to get on with this and enjoy another stint of treatment free time after the 2nd transplant this summer .Depending what Kings decides to do with me .
Good luck with yours Keith and thanks for the advice min
Best Wishes
Sandra x

[sandraParticipant]

Hi all ,

Cycle 4 of Vel/Dex halfway under my belt and feeling pretty p****d off with it so far . Very tired and the taste is disgusting !! After a rapid drop from 20 to 11 the counts are static but my very enthusiastic Doc in Eastbourne still assures me he is not worried by this and its not just the pp,s he is interested in but the whole picture but it is very hard to join him in his enthusiasm !!I think that although I havent suffered any major problems or PN with it the whole first relapse scenario has really got me down this time .
I am struggling to drink the required amount unlike first time round when I was the most boring person on earth extolling the virtues of constant hydration , I think 2 years of remission almost put me into denial and it has been harder getting my head back round it all . Also my teeth are so sensitive cold drinks are not on the top of my hit list !
Anyway sorry it is a bit of a whinge I really have just had enough today and you are all on the receiving end of it ! Normal service will be resumed as soon as possible once I have given myself a swift kick up the posterior !

Sandra xx

[sandraParticipant]

Thankyou Min I really lost it at the rectal examination of the thyroid !! priceless :)xx
Sandra

[sandraParticipant]

Hi all,
My name is Sandra I am 46 and I was diagnosed in Jan 08 after reporting in to the blood doner people and being refused and sent to my doc . Like the rest of you the rest is history I was given 3 months of iron tablets and then obviously alarm bells rang with my doc ( also your wonderful one at Eastbourne Sarah !)who ordered a bmb and diagnosed me . I had CTD treatment followed by a SCT at Kings in Oct 08 . Had a very happy active 2 years then started on Vel /Dex in January this year . Luckily I have no other problems so far and have led a very normal life with my 2 kids . I also post on the under 50 site as well ! I havent been on this site as much since it changed over and like many tend not to post when life is ratteling along normally when in remission but just thought I would say hi to you all again !x

[sandraParticipant]

Hiya ,
I dont post on here much but do a lot of reading , I am on my 3rd cycle of Velcade at the moment and luckily have had no p/n but for me the worst side affect is definately the moon face and very piggy eyes . I am sure that people double take me in supermarkets ! When I was on thal/dex first time round 3 years ago I suffered the same thing so it is definately the dex taking hold . Also the little round belly isnt very appealing either and the constant craving for sugars and carbs . Thats it I am off to audition for an ooompah loompah in charlie and the chocolate factory that will sort out the physique and the sugar craving in one !
Love Sandra x

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