Hi Dai

You have a good point with Muk 5!

I asked about it,consultant said Slim had not had Revidimide so did not qualify, Helen has not had Velcade so questionable!!!
But I am making further enquiries

The reason why is when Slim had CDT over a period of six cycles it had no effect , the myeloma increased to 80 percent, now they are…[Read more]

Hi Maureen

Ring up Myeloma UK speak to nurse and they will send you the package as many as you want to take into GP.

Wishing you well and it's good to know you have some support . Love Eve

Dear David

Your posting jogged my memory one we have stayed in the Union Jack Club,did not realise it still existed ,mine was no honey moon, ( dirty weekend) springs to mind,still waiting on honeymoon,Slims not a great one for surprises his excuse is I always find out about them!!! Two a few years ago we spent time looking for Slims fathers…[Read more]

Hi Ted
Blood test do vary,you need to take certain blood test and urine test to suggest a blood disorder .

When you feel ill a general blood test is taken looking at different functions,doctors usually have blood test on a chart in there computers so any change stands out clearly. These should alert doctor to changers within the body,here…[Read more]

Dear Dai

I am so happy for you and Janet,I can almost see that big grin on your face.

Velcade worked well for Slim while he was on it,just tiring going to hospital, not the Velcade waiting hours ,I know your experience of Velcade is different,if you are not having it subcutaneous ,get a hot water bottle,worked wonders for Slim,before…[Read more]

Hello Eva

I was trying to say once you have been diagnosed and think there are questions to be answered!! Concerning your treatment leading up to Myeloma being diagnosed ,once you write a letter asking questions, the legal implication kicks in, so your chance of any truthful answers if mistakes have been made is nil. As I said lip service…[Read more]

Hi Tom

Trials offer availability to drugs, that are many times not available under the NHS.
I do not know how researchers work, it would be nice to have some explanation on there work but I do not think that is the issue here.

The criteria for a lot of trials is based around new patients, patients who have not had treatment,as time goes…[Read more]

Hi Everyone
Well the patten is there failer in the GP. Surgeries,what can we do about it?? How can we change it??? Because it is costing lives and costing the NHS a lot of money to give the patient extra life. . I do not believe as individuals we can do anything about the GP.!!!
I tried and failed,lip service springs to mind.I took Myeloma…[Read more]

Hi Dai

Well you new I would not be able to resist your charms lol (no problems Janet)

I will do my best to put it in some form of order!!!

First Ali,s Revidimide ,the doctor answered her question " if it was your mother" I believe that doctor did the best for patient,but you have to ask yourselves how many doctors would be thinking the…[Read more]

Hi Everyone

Interesting reading different diagnosis,which makes the difference between damage and no damage!!!
Tom you surprise me,I thought you would think doctor know,s best ,learning new things about you,takes something to question a doctor or 2 doctors opinions.

Tom M. I agree completely with you ,you do have to be pro active,in many…[Read more]

Hi Maureen

I do not know how your husband was diagnosed!! So impossible to comment except to say it usually begins with GP, I wrote to my original GP,asking questions wanting answers and I stated clearly no further action would be taken as I understood in general they do not consider Myeloma they consider back problems.

My most important…[Read more]

Hi Everyone

On reading all comments about maintenance ,I would like to add mine.

As people know Slim only got six months after 100 daysSCT .he was randomised. No maintenance . He had complete remission ,I do wonder if he had maintenance would he have got longer????.his general health,cough colds infection is excellent,and his bloods have…[Read more]

Hi Dai

Well you are wrong about one thing,I am not sorry I asked!!! I hope you have a really good summer,I know how much I miss about our life before MM took its toll and living on memories is not the real thing,2. 1/2 years for us,with six months remission when Slim was not great is not enough. You are a lot longer and like us whole routine…[Read more]

Hi Dai

How are things going!!! 10 days is a long time when you are waiting to see what results you will get from GCSF,do you feel good in yourself !!! Are you able to enjoy some free time away from medication!!

Spring is late this year,but it is lovely to see the blossom and flowers in bloom,so looking forward to the heavy smell of the…[Read more]

Hello The Wife

Welcome,sorry there is no name,my names Eve,and in a very similar position,except we know its back,how quickly it is going we do not know,Slim has another BMB today!!!.three months from his last one.

Please have no secrets between you,if he is in pain he is thinking the same!!!! Be open talk it is the only way to get the…[Read more]

Hi Sue

We all new Keith,but not you,I hope you can find some comfort with the knowledge,that he will be missed by his cyber friends, he never posted a photograph of himself,but we all new when he was not posting specially when he new that time was not on his side.

He made time to reply to other people who asked questions,as Keith was ahead…[Read more]

Hi

Sorry to hear about mum,nose bleed can be the result of many things,Myeloma is a blood cancer,which brings problems with blood eg platelets or blood to thin because of other drugs,needed to treat your mum,your mum is in the right place,they will take blood and find out why your mum is having a nose bleed,talk to your mum,she will be…[Read more]

Hi Pat

Just to set the record straight,I am a scouser,living in SE Kent,my family up north,would say I have a plum in my mouth after years of living south of the Thames .I am no Cille Black,I think Slim would divorce me !!!! I suppose because I left my roots,plus travelled I do have a different out look,plus Slim could live out of a suit…[Read more]

Hi Peter

I read the article plus comments,my thoughts on this, it was sad to hear the last comments !!! I think if you are generally healthy,it gives you a head start when cancer strikes,but I do not believe if you do deprive yourself of things you have found a magic Formular .

When Slim got Myeloma I took up reading all about diets ,and…[Read more]

Hi Jan

I wonder how many would take it up!!!
Everyone can do fact but it,s just paper work or if you like a survey .
The Myeloma world is hear on this forum,because it tells you about how people are living with it now,how family react. My daughters do not get involved with the medical side,if I asked for help I would get it from them, I…[Read more]