Myeloma Forum | Kes | Activity

Kes replied to the topic Rain, Floods and the Professor in the forum Treatment

Tue, 27 Nov 2012 09:14:13 +0000

Hi Andy
Sorry you got such news yesterday !!! But as Dai said u never know each month a new person donates is another chance of u getting a match xx

Keep taking the drugs & an eye on that donor list …

Take care

Regards
Karen

Kes replied to the topic Coming to terms in the forum Newcomers

Mon, 26 Nov 2012 22:34:10 +0000

Hi Peter
Really pleased all your tests were good & things are now on the move xx
I went to clinic today expecting to pick up my 6th cycle of drugs but they decided to stop all drugs & I'm just waiting for the phone call to go into hospital for a couple of days to have Hickman Line fitted then large dose of IV Cyclo not sure what happens after…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Mon, 26 Nov 2012 17:29:05 +0000

Hi Ange
Pleased treatment started & your ok my love xx
I went to clinic today for general 3 weekly bloods & they have decided not to carry on with cycle 6 !!!! I am now jus waiting for a phone call to have the Hickman line fitted , which means 2 days in hospital & large dose of IV chemo ( the same as the oral version I was taking ) .. Then not…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Sun, 25 Nov 2012 09:54:40 +0000

Hi Ange
Thanks for the kind reassuring words
I hope you have managed to get started with cycle 5 ok xx
I will find out tomorrow i(Monday) if I start cycle 6 & what all my results are since the past 3 weeks !!

Hope you get on ok with this cycle & no more infections

Regards
Karen xx

Kes replied to the topic Coming to terms in the forum Newcomers

Sun, 25 Nov 2012 09:46:47 +0000

Hi Peter

It's reassuring to hear that some normality returns after the drug cycles are finished …
Really pleased to hear that your SCT treatment has started moving xx their not hanging about !! Which is great , will you be in hospital over Xmas ??

4 million sounds mega hope they get the little blighters !!

Good luck & constant good…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Sat, 24 Nov 2012 09:59:55 +0000

Hi again Ange
Thanks for the info , you appear very informative on mm especially since like me you were only diagnosed in August like myself You must do a lot of research ??? & ask lots of questions ..

I'm at the hospital clinic on Monday for bloods etc & to see how things are going .. Fingers crossed all in the right direction xx

Yes the…[Read more]

Kes replied to the topic REVVING UP FOR SCT! in the forum Treatment

Fri, 23 Nov 2012 10:15:14 +0000

Hi again Chris
Just been having a long read regarding your SCT .. It sounds very scary !!!! I haven't got a date yet .. Don't know if I should have read it really .. I knew it was going to be a long haul but !!!
Really pleased you are through it & on the road to recovery .. Take care & stay we'll

Regards
Karen

Kes replied to the topic Coming to terms in the forum Newcomers

Fri, 23 Nov 2012 09:20:12 +0000

Hi Ange
Thanks for the warm welcome
You sound like you've had a time of it !! , my side effects weren't too bad apart from the days off the Dexi's but this last cycle have been a nightmare . Shakes are horrid & the Wobblies it's like I've had one drink too many , I don't like climbing or coming down the stairs as I feel unsafe .
I began…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Fri, 23 Nov 2012 09:05:32 +0000

Hi Andy
Thanks for the warm welcome
Sorry to hear that you are not able to get along with the so called " normal" treatment & I really hope this match works out for you xx

The support on the site is excellent knowing people are reading & following our stories also vice versa ..
Good luck for Monday
Regards

Karen

Kes replied to the topic Coming to terms in the forum Newcomers

Fri, 23 Nov 2012 08:55:13 +0000

Hi Liz
Thanks for the welcome & the positive info on Nottingham hospital ..
Sorry to hear your husband has had a relapse & hoping this other treatment kicks in !! . A lady I met in hospital also diagnosed 1day after me is on Revlimid . She doesn't appear to have had any side affects , not like the CTD I'm on . It's quite strange really as she…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Fri, 23 Nov 2012 08:45:25 +0000

Hi Chris
Thanks for the warm welcome
Please don't apologise or any guidance you want to share it is greatly appreciated
You are correct in saying that unless I ask questions the medical staff don't seem to tell me much , I do ask my regular numbers .. Haemoglobin , GFR, Light Chains & neutrophils & compare them every 3 weeks . Saying that…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Thu, 22 Nov 2012 13:28:16 +0000

Hi David
Thanks for the welcome , knowing people know what I'm on about does help !!!
I just want to put it out of my mind for a few hours a day !! Just so as to have a bit of normality but easier said than done .
Are you or have you had treatment ??

Regards
Karen

Kes replied to the topic Coming to terms in the forum Newcomers

Thu, 22 Nov 2012 10:23:49 +0000

Hi Yom

It's great your so so possotive , I had a dreadful day yesterday !! Very depressed & dark mood .. 🙁
I have sent you a friend request on FB , it looks like you 🙂 you will have to check

I'm realy gonna try & kick my butt today

Regards
Karen

Kes replied to the topic Coming to terms in the forum Newcomers

Tue, 20 Nov 2012 21:20:16 +0000

Hi Tom
Thanks for the info , the Mushy brain (chemo brain) 🙂 is right old pain in the Butt !!!!! . I was admitted with sickness , weightless , generally being unwell & the dreaded cough , also my kidneys are affected but light chains have gone down from 14,600 to 80.2 so hopefully something is going the right way .. The cough does worry me…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Tue, 20 Nov 2012 16:16:57 +0000

Hi Alex
Thanks for your reply both diagnosed at the same time !! .. I don't understand what "pad" Is I'm on CTD trial also my 5th cycle .. Like you I wish I could go just one day without thinking about the bloomin Myeloma !!!! .. I get lots off dark thoughts & have a tendency for pushing people away , which I know is spiteing myself ,
Are u…[Read more]

Kes replied to the topic The Under 50s Group in the forum Under 50s

Tue, 20 Nov 2012 09:57:21 +0000

Hi Jet
Thanks for the comforting reassurance . No not given a date yet for SCT , I go to clinic next Monday 26th nov & ill either start my last cycle or ??? .. My main worry is infection & neutrophils afterwards !!! …
Just off to the dentist as my teeth are rubbish since been on the CTD

Take care & thanx
Karen xx

Kes replied to the topic Coming to terms in the forum Newcomers

Tue, 20 Nov 2012 09:47:24 +0000

Thank you all x x

Kes replied to the topic The Under 50s Group in the forum Under 50s

Mon, 19 Nov 2012 15:05:38 +0000

Hi Kay
Thanks for the reassurance , I'm so nervous about the SCT or should I say the neutraphils & infection afterward !!!! Just hope I'm as lucky as you and it goes like a breeze …. I'm always anti-bacterial everything down now so goodness knows what what I will be like after . Up until now all my numbers appear to have been going in the…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Mon, 19 Nov 2012 09:59:23 +0000

Hi Ali

Really pleased with your good news bout your mum 🙂 . I liked Proff Russell when I met him , straight to the point & no beating about the bush !! ..
Just waiting for date for SCT then off we go

Regards
Karen x x

Kes replied to the topic Coming to terms in the forum Newcomers

Mon, 19 Nov 2012 09:55:02 +0000

Pleased to here the hospital is fab but didn't realy expect it not to be . Thank you for putting my mind at ease x x x
Regards
Karen

Kes replied to the topic Rev/Dex Update As Promised in the forum Side-effects

Sun, 18 Nov 2012 09:10:20 +0000

Good luck with your up coming treatment love

Regards
Karen

Kes replied to the topic The Under 50s Group in the forum Under 50s

Sat, 17 Nov 2012 09:38:55 +0000

Hi Jet
I live in Lincolnshire but will be having my SCT at Nottingham . I have already met Proff Rusell ,, did you see him ???
I am on CTD of the trial at the mo cycle 5

Good luck
Regards
Karen x

Kes replied to the topic The Under 50s Group in the forum Under 50s

Sat, 17 Nov 2012 09:06:36 +0000

Hi Kay
I too am new to the site , I have been chatting on the other pages until someone mentioned the under 50s ..
I am 48 & was officially diagnosed August 1st this year just over 4 months ago . I was totally devastated. After being ill for quite some time , vomiting , weight loss , very very tired , headaches & a general unwell feeling ..…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Sat, 17 Nov 2012 08:54:21 +0000

Hi Mavis
Thank you for welcoming me to the site forum , yes I am on trial X1 so will be having SCT if all goes to plan .. It will be carried out at Nottingham general hospital as our local hospital isn't equipped (LincolnCounty)

My main problems at the mo are aches and pains mainly in my ribs , & the tremors my whole body shakes , typing is…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Sat, 17 Nov 2012 08:42:14 +0000

Hi Dai
Thanks for your reply . I much appreciate all advice & info given .
I too wish I wasn't a member of this forum but I am & I'm glad I found it !! . It helps to know other people know what I'm talking about even though I wish they didn't xx

Regards
Karen

Kes replied to the topic Coming to terms in the forum Newcomers

Sat, 17 Nov 2012 08:33:13 +0000

Hi Peter
Really pleased all went well with the CTD , all my numbers appear to be going in the right direction , keep seeing this PP ???? I'm presuming its Paraprotien ?? I don't know anything about this !!!! ? That will be a question for my nurse .
When I was first diagnosed my Light Chains were 14,600 but at last check had reduced to 80.2 .…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Fri, 16 Nov 2012 08:55:53 +0000

Dear Eva
Thank you so much for your long & informative reply it was very interesting to read …. You sound like your getting on with things now & that's great .

I will try set myself goals but its making myself do it that's the main problem !!!

Have a good weekend

Regards
Karen

Kes replied to the topic Coming to terms in the forum Newcomers

Fri, 16 Nov 2012 08:42:05 +0000

Thank you
For your reply , yes mm does take over my thoughts . I do have a husband but he but he doesn't really understand what's going on , he's not a big reader so hasn't read the literature !!! Only what I explain to him ,
I'm a very private person so not got many close friends (I sound a right saddo) , I spend a lot of time on my own !! ,…[Read more]

Kes replied to the topic Coming to terms in the forum Newcomers

Thu, 15 Nov 2012 18:09:18 +0000

Hi Alison
Thanks for kind words , yes I've spoken to the Dr & he gave me some medication
I feel shaky & light headed most of the time
Did you have the SCT ??? .

Ps …. Ya not rambling 🙂

Karen

Kes started the topic Coming to terms. in the forum Newcomers

Thu, 15 Nov 2012 09:25:51 +0000

Hi
I'm a 48 yr old female , diagnosed in August this year with Myeloma , I've read lots of info & read lots of statements on this site I think you are all great & positive ,
My major problem is coming to terms with the diagnosis I am very depressed & can't think of anything else but the Myeloma at every waking moment !!! …. It has taken over…[Read more]