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
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 that ….. I suspect i will be sent home with the injections . It's nice knowing I don't have to get up tomorrow & take 37 tablets ..
Looks like we will be having treatment around the same time, I'm having my treatment at Nittingham City Hospital ..
It would be nice to be home at Xmas but depends on how things go I haven't been given any dates as yet
Good luck with everything & keep in touch
Regards
Karen x
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 sure what happens then ????
I'm just hoping I get a few normal days without any side effects ( dizzy , shakes , stickies etc etc ) before the SCT
Im glad your off your Anti Biotics & they have got other meds sorted
Take care & thanks for thinking of me today it is very kind of you xx
Regards
Karen X
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
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 progress with all upcoming treatment
Regards
Karen 🙂
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 weather is very foggy here in Lincolnshire & the car iced over …………
Hope your weekend is good
Regards
Karen
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
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 treatment on 2 Thalidomide but then the consultant decided to up it to 3 ?? It's since then that the side effects appear to have taken hold !!!
I'm a little bamboozled by the M protein level numbers ?? This is something that's never come up in conversation with any off the medical team ??
When I'm on Dexi's I tend to keep my feet up a lot they have swollen but not a huge amount which is good
Once again thank you for welcoming me & good luck with everything
Regards
Karen
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
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 only lives 8 miles away we speak regular by text & FB we also have joined a support group , she is my rock & become a great friend .. Just wish it was under different circumstances ..
Regards
Karen
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 the staff are lovely especially the specialist nurse (Tracey)
I also suffer with constipation & have to drink the horrid Laxido (yuk) . Also I think my loss of appetite is brought on by my worrying it feels like I have a lump stuck in my throat !!! ……
My prob at the the mo is the bloomin shakes & tremors its a nightmare trying to use a pen is almost impossible !! My whole body shakes , not many people appear to have commented on this subject .. Also my eyesight is more rubbish than normal .
My next clinic appointment is this Monday 26th so we will will see if things are going the correct way .
You had a 8 cycles ?? Was there a specific reason for this ?? I am being told 6 ??
Thanks for your reply
Regards
Karen
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
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
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 slightly though we will see what the MRI shows up next week hopefully NOTHING !!!
How are you now ?? You sound well
Regards
Karen x
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 having the CST ?? I hopefully will be , but I have a constant cough I've had a chest X-ray & due a intensive MRI Scan on 29th nov . I become breathless & wobbly got dreadful tremours & a mushy brain !! Think it's part of the drugs side affect .
I have a wonderful specialist nurse called Tracey who is very supportive she's a great leaning post .
While I was in hospital waiting for them to discover what was wrong with me I met another lady who only lives 8 miles from me & is 42 she was also diagnosed with myeloma we keep in touch regular by text phone & Facebook . She is much stronger than me . & just gets on with it she too is on the trial but RTD .
I'm pleased your able to carry on with your course like you say it does take your mind off things for a while , unfortunately I can't concentrate much so would be a right dumbo . I absolutely love photography but not picked up my camera sinc being home . I even struggled to remember how to use the laptop !! .
I should soon be having an Hickman line fitted then my brain may work a bit better when off the oral drugs ,
Good luck with your treatment & enjoy your children I have a beautiful grandson Oliver whom I love dearly but at the mo he totally wears me out … He is only 2 yrs old
Regards
Karen
