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]

Hi Helen

Slims ok about BMB he has had at least 6 says its not pleasant ,but would rather know the situation with Myeloma.

Only because we have been hear before the symptoms are all there,fatigue big time,body aching all over,colouring not good,appetite small,going backward with health,Slims a stubborn man takes a lot to admit to pain,but…[Read more]

Hi Everyone

By the time Pat reads these post,cleaner hired plus making lots of arrangements,away from work!!!

We were lucky we had a good head start on all of you,over a short period a long time ago,we made big decisions completely changing are life's ,sold business kept a small flat to let,and off we went,dog as well,travelling everywhere…[Read more]

Hi Dai

Well I must have read it wrong as well,Revidimide and Velcade had to be used before eligibility for Muks 5 .Which if only patients who were on CDR then Velcade then relapsing would be eligible,I would think they will be hard pushed to find patients!!!!

I would seriously question eligibility !!! Good luck Dai. Love Eve

Hi Everyone

Getting a cleaner is the best thing I did,only 2hrs but makes a difference,mind you she sought of hinted about my 20 year old dyson,and she did bring her own steamer,I went out and bought one the next week,no doggy smells to be found,when Slim has a moan about her moving things,I have to have words with him,he has old man syndrome…[Read more]

Hi Pat

Yes there is,I stand in amazement at people who do not get help in the house ,but if cleaning floats your husbands boat????,it's ok. I intend to spend as much time with Slim,not cleaning,less cooking and more going out.

As for depression it must come with the territory ,its the ability to recognise it,do something about it,and not…[Read more]

Hi Sandiex

Your mum should only get zometa side effects for a short while and it does work wonders with bones for a short period. Why Warfarin and not Claxane you could do them for mum they will do the same job but cost more, I would consider Claxane to be very important as chemo side effects are blood clots!!!,

Sandiex Osteo Cronosis of…[Read more]