Dear Dai and Eve
Thank you
I have asked about future trials, unfortunately there are none set to run here in the next few weeks, muk5 is on its way but you need to have tried Velcade and it has to have worked. Maybe there will be others I don't know. They are concerned about my neuropathy as there are very few other options if I can't have…[Read more]

Hi Karen

Welcome to the forum – I know you would rather not be here but we are all a very friendly bunch. My hubby has MM and I don't know what I would have done without my 'cyber friends'. Great place to get support, share info, get advice and also if you want to rant this is the place to be :-),

Love Jean

Hi Maureen

Welcome, may I first suggest Ellen Myeloma nurse on here can help,send EMail or phone.!!!

I do not know the chemo combination ,so cannot comment, I do know he should not be in pain,but you do not say what combination of tablets he has to help with pain,plus what damage he has in bones or if pain area is we're lesions were,so…[Read more]

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]

Dear Vicki, Eva, San and Jean
Wonderful holiday in Cornwall thanks, weather splendid as usual down there. 🙂 Vicki, I took the daughter and the boyfriend……. Cost me a fortune they did…. Returned home to the usual frostbite and wind! 🙁 And a letter from the hospital detailing the velcade appointments, :'-( hey ho just got to get on…[Read more]

Dear Eva
Many thanks for this, I will certainly see the optician, I have a supply of antibiotics too…. An enlightened haematologist I think.
San and Jean thanks for your good wishes, I've updated my recent thread.
Love Helen

Well Dia

I think this is good news if anything it will buy you a bit of time i am glad your nuets are good and the purdah can end I have the velcade subcut once a week much less side effects PN etc after my sixth cycle UCH want me
to have velcade once every two weeks stretching it it out to 9 cycles less agressive they say then thalidomide…[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 Dai that's great for you and am sure Janet is delighted. And an extra bonus you can do visits – great 🙂 Hope all goes well

Helen good luck with the treatment. Will be thinking of you

Love Jean xx

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]

Dear Dai
I hope it works for you again, i await your musings with interest as I start the same regime with added cyclophosphamide next Tuesday, I'm not looking forward to it, but suppose I must get on with it. I currently have pins and needles in my hands and feet and a black eye which I woke up with on Friday, just what is all that about?
Love…

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]