Hi Christine

My names eve and my husband is very much the same, I know how you are both feeling we are waiting on second BMB,first showed. 10 percent .Slim had his SCT in May he only got 6 months after 100 days,he had trouble getting his platelets up did not connect the two things.

Chris should be eligible for Muk 5 trials had right chemo 1…[Read more]

Hi Maureen

Well worth the phone call,everything helps.

Slim is not on treatment,that is the annoying thing,because the only way to tell what is going on is in BMB,had one in February which showed 10 percent ,another one 7 May,we are waiting on results.bloods showing small changers ,but not drastic,on a personal level I have learnt to go by…[Read more]

Hi Georgie

Welcome to the Myeloma Forum,I was going to say it,s not a nice place to be,but it is,and you have come to the right place for support.

What your consultant is telling you is true,chemo will do the job,radiotherapy is only for people who are in danger of having more damage or the pain becomes to much .

If you want to help your…[Read more]

Hi Rach

It's hard but do not panic it takes time plus blood test to see if its on the rise,2 sounds a nice number,has your mum been on medication or been off colour,it all effects the blood results,its never just about blood.

I also think its a natural reaction because your mums had a SCT its not the end of worrying ,I some times think its…[Read more]

Hi Karen

I am so sorry to hear the outcome of Myeloma,that should never of happened ,we need to hear from people like yourself,people who if they had been diagnosed earlier who would be in better health as less damage would possible not have happened,I think you GP owes you answers!!!

Do you remember the name of the private osteopath ,may be…[Read more]

Hi Maureen

I am glad Ellen could help you,it is nice to be able to ask questions and get a different view ,most people on here are Myeloma patients or carers,then family members who need answers.
When Myeloma is first diagnosed,you read the leaflets and think how an earth are you ever going to understand any of it,specially medical jargon, you…[Read more]

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]

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]

Dear Maureen and Ian

I do wish you well in your battle. I'm glad that you, Maureen, have the emotional energy to carry on with it.

I was misdiagnosed for months as worsening arthritis, when the fact I had reported weakening and falling (not results of arthritis) should have alerted GP. I also begged for Private Appointment with Consultant,…[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]