eve replied to the topic John's 2nd sct in the forum General 12 years, 4 months ago
Hi Helen
Just to save any mixup its not Kings I am talking about when I talk about 1 designated nurse.I am talking about the south east England corner,Margate,Canterbury and Ashford if the information I was given is correct they only now have ONE designated Myeloma Nurse,use to be 4 and because of cuts it,s down to one. Eve
eve replied to the topic Finished Cycle 4 CDT (last one) in the forum Treatment 12 years, 4 months ago
Hi Tina
A holiday is what you need away from the Myeloma Bubble,Lets hope for 10 days of sunshine and you coming back in the right frame of mind to tackle the next stage.love Eve
Elizellen replied to the topic A difficult harvest in the forum Treatment 12 years, 4 months ago
Well done that man!!
I am so pleased to hear enough cells were harvested and that you can go on that much needed holiday.
My SCT was similarly timetabled too – no hanging about for days between processes seemed good to me.
Love
Eliz
eve replied to the topic John's 2nd sct in the forum General 12 years, 4 months ago
Hi Everyone
Amilea in UK first line treatment for people not on trials use to be CTD then SCT or not,then no maintenance!!!!,do not know if its changed but trial people had a lot more options this is why trials are best.
Helen it is finding out information that is my problem,I do try to do as much research as possible,as nice as the nurses are…[Read more]
eve replied to the topic Radiotherapy in the forum Treatment 12 years, 4 months ago
Hi Andy
So glad to see thing are going looking up,I would go for all three big time, I know even without MM back problems in the low spine,cause a lot of problems so I hope this treatment does the job,and gives you some of your life back.
eve replied to the topic A difficult harvest in the forum Treatment 12 years, 4 months ago
Hi Mari
Yes they do not hang round at Kings,Slim was due the same ,Hickman line day 1,then other events took over and he came out of hospital.
So glad you are managing that holiday,it will be the best thing in the world to build Stephen up ready for his SCT,and give you a well earned break before you start the next round.
A few months ago…[Read more]
eve replied to the topic This, Rev, Dex & That in the forum Treatment 12 years, 4 months ago
Hi Dai
Have a nice weekend,summer is suppose to be on it,s way;-)Eve
eve replied to the topic Recently diagnosed in the forum Newcomers 12 years, 4 months ago
Hi Mike
Just a welcome to a exclusive club,be it that you are a patient carer family or friend.It is mind blowing when you are first told even if you are expecting it,I could tell you not to worry,but you will,your mind will still be awake in the early hours of the morning,but you will over come all this,and find out it,s not the end of the…[Read more]
Elizellen replied to the topic Curcumin in the forum General 12 years, 4 months ago
I could not find many posts here about it but I think I did find the blog you mentioned, Debs
Elizellen replied to the topic Bristol SCT in the forum Treatment 12 years, 4 months ago
Woohoo!! Well done that man!!
I am glad to hear you are now back at home, Stephen.
I know you don't really need to be told, but do listen to your body and rest when it tells you to!
Love
Eliz
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Elizellen replied to the topic Feeling low in the forum Treatment 12 years, 4 months ago
I am so sorry to hear of your sad loss, Etta!
I am glad you were able to talk to your daughter over cyberspace and cry together,and rest assured that any time you feel the need to post here when things are getting on top of you there will always be someone to listen and respond.
I wish you and your family well over this sad time.
Love
Eliz
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eve started the topic 100 days.. in the forum Carers 12 years, 4 months ago
Hi Everyone
I am not sure if this is the right place to comment on what i am going to write,but it is my view as a carer!!!.
My husband had completed his SCT,and is now under Kings for 100 days,but we live 85 miles away.So Kings have an agreement with Canterbury that they will check bloods and do infusions as needed any other problems are A&E or…[Read more]
eve replied to the topic A difficult harvest in the forum Treatment 12 years, 4 months ago
Hi Alison
Kids are lovely,I could use a few sayings to describe Slim at the moment,but I do not think it would go down well on site plus,I do not think people (except Tom ) get my sense of humour,what I found very funny is my 2 granddaughters came to see Slim,and on the way out,asked there mum could they kiss him,they are 14 and 10??.I thought it…[Read more]
eve replied to the topic This, Rev, Dex & That in the forum Treatment 12 years, 4 months ago
Hi Everyone
Looking back at Slims time on Dex during ctd and velcade,he started with 40 reduced to 20 after pneumonia and blood clots on the lungs.
Dex 40,hell to live with,played tricks with his mind plus hid how ill he was!!!
Dex 20,I had my Slim back,would have liked him with more energy and the will to eat!!!
Keith 4 days on 40 of Dex…[Read more]
eve replied to the topic John's 2nd sct in the forum General 12 years, 4 months ago
Hi Everyone
Well all this is thought provoking,even in the middle of the night or in my case early in the morning:-P
I think you have two different levels of people with Myeloma here!!!!
Dia can I put you in the latter group of a very limited life span!!!{ no offence is intended}:-)
Then Helen who has taken CRD as first line…[Read more]
eve replied to the topic John's 2nd sct in the forum General 12 years, 4 months ago
Hi Everyone
Well I for one am glad that this subject is being openly talked about.
First may i say Amelia on Myeloma Trials which you should find info on this site,after SCT you are randomly picked for maintenance or no maintenance,Helen was luck to be picked.
Helen we need more people like you to get on your soap box,because with it comes…[Read more]
eve replied to the topic A difficult harvest in the forum Treatment 12 years, 4 months ago
Hi Mari and Ali
I hope you do manage to get away,will do you both the world of good,school brakes up soon,so that will be a rest for you Mari.
I agree Ali your mum is very brave,must be holding a lot of those emotions in,SCT is not only body draining it takes you in to another world of emotions,so your mum is holding her own,by taking control…[Read more]
eve replied to the topic This, Rev, Dex & That in the forum Treatment 12 years, 4 months ago
Hi Dai
Well I would agree,and can see what you mean concerning damage to the skeleton,as you are aware Slims skeleton damage is extensive,but at least no compression,so the ability to put one leg in front of the other is there,even if there is pain.
My concern is you attend the hospital,bloods show no markers of illness,but as a carer I see a…[Read more]
eve replied to the topic John's 2nd sct in the forum General 12 years, 4 months ago
Hi Helen
Well to some extent I would agree with your outlook concerning second cancer,but I also think it depends on what second cancers are rearing there ugly head,for example percentage wise are they blood cancers,they must have some dater on it ??????
If for example it was causing (PCL) using that as an example!!! as we know of at least one…[Read more]
eve replied to the topic This, Rev, Dex & That in the forum Treatment 12 years, 4 months ago
Hello Dai
I like the old saying ( you are as old as you feel ),I think this should apply to health, (you are as good as you feel )
Your bug or what ever just might have been that, a bug,that even without the MM might have knocked you off your feet anyway.I have just had the same with all the symptoms you mentioned.
As a carer I look at…[Read more]