Hi Keith,

Well I am four months ahead of you on Rev @ Dex. My side effects are visible with the usual. DexEffects tm. The RevEffects tm. are less visible but they are the ones that determine good weeks and less good weeks. Fatigue seems to be the worst culprit but I'll take that and so far I can honestly say that if it carries on like this…[Read more]

Hi Jean,

The standard agenda for treatments in the UK is laid down by NICE (The National Institute For Clinical Excellence) which actbotany as a guidance and funding body. Their 'guidance' Is actually quite a strict funding regime… You can negotiate treatments away from their heddle but not from their funding, which carries no guarantees…[Read more]

Hi Keith

Lets Hope you will be taking them for years and years Good Luck with it all Keith and heres to minimum side effects 😎

Tom "Onwards and Upwards"

Hi Keith

good luck with the new treatment I sure this one will work for you I know a lady in my support group who is on her fourth year of REV DEX so it sure works for some people you didnt say where you are going on hols hope its somewhere warm
Love Jo x

Hi Eve,

I believe that the NHS is a wonderful institution within their doors… but the second you are outside of their walls you are out of sight and out of mind. With a lot of conditions, MM to the fore, you need follow up and support, desperately so at times.

Many such occasions have proven to me that from the moment you leave the…[Read more]

Hi Mavis
Thanks for your wishers.

No such luck on the bloods,came out of hospital on Saturday,went yesterday to check bloods,phoned he needs platelets so back in to day,then check bloods again Wednesday,Then 86 miles to Kings Thursday.
Tried ringing Kings yesterday as Canterbury could not answer a question about injections,still waiting a…[Read more]

Hi Liz
So sorry that you have had the news that all of us who are post transplant dread getting . it´s back. I can only imagine what a blow this is to you both but you sound pretty practical and a great coper.
Hope the treatment goes well and that you have better news soon.
Best wishes to you both
Carol xxx

Hi Jen
You could be talking about my husband,except he had tumour on back,plus lesions on skull and shoulders after first CTD his bone marrow went up to 80%,so started Velcade which took it down to 6%,it was still going down,then he had his SCT and has come home,but is having a few blips on the way.

Slim has a chemo brain,I drive most of the…[Read more]

Hi Helen

I know,its just he has been here before and it took a lot out of him then,I was told then,he may never get back to the man he was,and they were right then,but give Slim his due he is a fighter,so fingers crossed.
I think it,s just me feeling sorry for myself,have given myself a kick up the bum:-P and Tom cheered me up 🙂

Going to…[Read more]

Hi David
I would agree, it just makes me wish I had put a high value on are years together 30 years together and 1 year married,I ask myself why we need such a wake up call as Myeloma to value what we are loosing.
I am feeling sorry for myself better give myself a kick up the bum.Love Eve

Do you know Eve if i could blush I would Lol

Well am pleased they didn't Chuck HIM out, yes I was under Castle Hill in Hull for my SCT and went every week to have bloods and check up then on my 10th day (or near as danm it) I had another BMB But hey Ho still in Remission since 2009 😀 and after all I went through it was well worth it 8-)…[Read more]

thanks Tom

It just what I need at this moment,a lovely man cheering me up and making me smile:-) 🙂 🙂

No they did not chuck him out,i think they have done all they can for him,because of this 100 day rule we are officially under Kings which is 86 miles away,they will keep looking at his bloods to see how he responds!!!!

I bought…[Read more]

Hi again Jeant

I was just looking through the post and thought I sounded very harsh I did not mean too, and must apologies to you.you are very worried and did not need me to tell you there is no answer.
The CRD has had good results its just about finding something that does the job,all the chemo,s have side effects and because people are…[Read more]

Grumpy old man Bless him Lol

Its a good job it was only a discharge note he made the mistake on the next patiant might be having his left leg removed just think of the mistake in that one? :-0
I do hope they didn't throw Slim out because the needed his Bed?

I know you will take care of Slim and wont let him do too much yet and dont forget…[Read more]

Hi Jo And Liz

Well my grumpy old man rang me at 8am yesterday to tell me he had been discharged so off I went to collect him,but when i got there,the doctor had made a mistake on paper work,so he had to be re discharged again by 11 he was loosing the plot,so all for a mistake in the paper work,Slim discharged himself,they were desperate for his…[Read more]

Hi Jean

Once when I was in the car with Slim,he was getting very jumpy and very annoying about my driving,he use to drive most of the time,i just came in handy when he had a drink and could not drive,but on this occasion we were on are way to hospital and he was so annoying i stopped the car.

He told me not to go any further as the car was…[Read more]

Hi Everyone

Helen it is a world wide Trial but it is not in all area,s of uk. I know in the South East Dr Pocop fought to get these trials allocated here.If they were not here Slim would not be on them as the nearest place that had them was Kings in London.86 miles away and sick patients would not be able to manage it.But you have the same…[Read more]

Hi Jean,

I fully understand your concerns… you want to know what is available and how it will affect Frank. I also understand Frank's viewpoint… he doesn't want to have to accept a treatment that will make him miserable for 4,5 or even 6 cycles… especially if the side-effects, in this case PN, become a semi-permanent condition of his…[Read more]

Hi
Oncologist this is a blood cancer were is the heamotologist ??????

Hi Jeant
My name is Eve,My husband has had CTD plus Velcade them SCT,I do not know any back ground,so it is very hard to make any comments.
The question you should be asking yourself is how much do I want to know,???

The experts have to answer your questions
So you must decide what you are going to ask.
If they are treating your husband…[Read more]