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 Eve,

As I said, here in Germany it is the norm for the doctors to give full medical examinations including blood and urine tests. They are paid by the Insurance companies to do so because they understand that it is actually cheaper for them to find problems early. The problem is the UK mindset. Everything is about taking a chance and not…[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]

Having gained limited knowledge of the way things work here in Germany and comparing it to the UK, the big difference is in the thinking. Because here health care is insurance based the thinking is very much prevention rather than cure. To this end the insurance companies are happy to pay for comprehensive health examinations because they believe…[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]

Dear Hawkeye

I am so sorry your Mum has passed away, condolence to you and your Mums Family and friends.
Just remember the good time before MM came through the door.

Tom xx

Hi Maureen

Well I was told I had a pulled muscle or a bruised rib when I went to GP, and before I left her I had another Dr brought into the room as I wanted. Second opinion as I knew it want one of those.

And after a bit of a fall out with both Drs I was given a chest X-ray , and as they say the rest is history.

Good Luck with it all…[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]

I am so sorry to hear your sad news Hawkeye, love to you and your family at this sad time.
Tony F

Andy and Steph

Am sure it was a great service, and am pleased He had a good send off.
Thanks for posting this Andy.

RIP Keith sadly missed

Hi Ali and you all

Well I had CTD then onto SCT and now sit here in remission so I cant help here Ali apart from saying, I have done and will do anything to kick this MM into remission, I also remember at the start of the MM discussions that I was told I Might Just Might get a secondary cancer 🙁 But I and my young bride Took it on the chin…[Read more]

I am 68 years age, diagnosed in march 2012 , immediately went onto myeloma XI trial, had my SCT this February, had my three month appointment last Thursday. All the blood counts were good, my para protein read 2.2, so am considered to be in partial remission. At the clinic I had a long conversation with the trials nurse about revlimid and…[Read more]

I am really sorry to hear about your brother's death and offer my condolences. It is a truly awful illness because you just don't know what its going to throw up next. There are lots of very inspiring people on this website who will give you help and support but would suggest you keep pushing the doctors for an answer. I know it won't bring him…[Read more]

Thank you Tom.. I love this site, everyone is so positive and supportive:-) [i][/i][b][/b]

Hi Mandy

Sorry for the late Poste re your first 🙁 I must have somehow missed it :-S

But I am pleased the Op went well, I understand the Kyphoplasty is pretty good and am pleased it works for you.

As for the hair loss well am a mere Male Mandy and nearly 58 so it didn't bother me in 2009, am sure you will look beautiful when you lose…[Read more]

Although I didn't know Keith, reading the posts here tells me he was well liked and respected. I hope his funeral goes well and is well attended. It's now time to support the family.

Thanks for the support San, so far things are ok with the Revlimid. Shocked at the cost of it though, the wife did some research and it's about 7000 Euros for 1 months supply. Thats just the drug and not the Dexy or the medical care. The Dexy has given me zits so I feel like a teenage again – No job, Mentally insecure, no one undertands me and…[Read more]