Hi

I am sorry to hear about your news,it’s not very nice when all hopes seem to fade,!

You must be absolutely shattered with all that’s been going on since last January,with hardly any time to take everything in,your experiences of hospitals is becoming more commen place,waiting hours just to be put on a drip,when your husband was so ill,it is…[Read more]

Dear Karen,
I may have misunderstod your consultants views or your interpratation but having monitored the internet for the past 6 years on myeloma I have to disagree; reality (in the uk at least ) is way behind the information about progress in myeloma available on the internet.If I needed treatment soon there is fifty percent chance it would…[Read more]

Hi Helen

Apart from serious mobility problems I am doing well. Still in remission though keeping my fingers crossed for my Consultant appointment in December when PP results will be available.

I’m with Andy about “quality of life” issues. I remember dear Dia saying once, that he regretted his SCT as it had only bought him ten months remission…[Read more]

Hi Matt

When Frank applied for policy, he had to answer loads of questions. One they kept harping about was “are you on very strong pain killers”. He asked what they called strong. They never had an answer for that and as Frank was only taking paracetamol – they accepted that. He got the yearly policy and when they sent the renewal policy it had…[Read more]

Hi Matt

My husband has been in remission for over 2 years. We love cruising and we got the best deal from All Clear – a yearly policy. When we asked about cruising in the Caribbean – I can’t remember what it cost but I know it was astronomical – so we stay with in Europe. Hope someone comes along and can give you more info

Best wishes
Jean

Hi Rosie
So sorry to hear your sad news,it heart breaking if you are not expecting it to be so sudden,I had Time with Slim to prepare are selves for what was going to happen,you can never tell with Myeloma all it takes is an infection or pneumonia ,I nearly lost Slim at the very beginning with pneumonia,so we felt lucky to get another 3 years…[Read more]

Hi all ,
Ive just been stateside(internetwise) on the myeloma beacon and Dr Rajkumar (mayo clinic , number 1 myeloma expert in the world in my opinion)states that the above criteria apply ONLY to patients at initial presentation .So if you have had smouldering myeloma for over two years these criteria may not apply .Which is as I expected;…[Read more]

Dear Chrissie,
Yes your cells will mutate but the next dominant clone that takes over may not be as clinically agrressive /significant presumably by suprressing the bad clones .We are all here because of mutations millions of years ago .
Mike

DEAR MARTIN ,
This is the thread which may resolve your concern about about 80% risk which has now become 90% risk according to the experts who indeed have access to the best retrospective patient data to make that guideline

Dear Smoulderers .

We all have two contrasting thoughts.Fistly we hope we will smoulder forever and never require…[Read more]

DEAR MARTIN ,
This is the thread which may resolve your concern about about 80% risk which has now become 90% risk according to the experts who indeed have access to the best retospective patient data to make that guideline

Dear Smoulderers .

We all have two contrasting thoughts.Fistly we hope we will smoulder forever and never require…[Read more]

Hi Angela and Graham

Move over Sir Bob. I really enjoyed that. Real good feel video. All looked if they were enjoying it.

Great well done
Jean x

P.s the drummer was brilliant

Dear Rosie

So sorry to hear of Chris’s death. So tragic it came so quickly and leaving your son so young.

I will pray that you are given the strength to cope at this aweful time.

Much love.

Mavis x

Hi Helen

I’m glad you have popped in again, but so sorry to hear about your Dad. However it is great news that you have actually retired! I do hope and pray it is a long retirement in spite of MM. So glad you have your daughter’s wedding to look forward to.

Go well with the treatment.

Lot of love.

Mavis xxxx

Hi K

Your Paraprotein isn’t too high so you may not start on treatment yet.

You should ask if your blood counts are normal as these affect your ability to ward off infection. Also if there are any problems with your kidneys.

MUK has a free treatment diary that gives good information about blood results. You can get one by ringing the Help…[Read more]

Hi John

I think it must be Zometa infusions not Blood that you are having. I have been having infusions for over three years. At the point I started having them I was told my bones were in danger of breaking at anytime. However I gradually got more confidence and although I am still careful I can now lift heavier loads. I’m glad to say that…[Read more]

Dear Chrissie,
Like Helen ,your question highlights the complexity of myeloma and the gaps in our knowledge in predicting the outcome in smoulderers(SMM)
The largest study on SMM was published in 2007 and this is still regarded as a sentinel reference and was published on both sides of the atlantic . The retrospective study was conducted at…[Read more]

Dear Chrissie,
Like Helen ,your question highlights the complexity of myeloma and the gaps in our knowledge in predicting the outcome im smoulderers(SMM)
The largest study on SMM was published in 2007 and this is still regarded as a sentinel reference and was published on both sides of the atlantic . The retrospective study was conducted at…[Read more]

hi helen
I think your posts explaining why you have smouldering mm and not mgus illustrates the complexity of myeloma and why there is understandble confusion in establishing the criteria of each diagnosis ‘modern technology (flow cytometry) however is starting to fill in the gaps in the knowledge of the above .Unfortunately the complexity makes…[Read more]

hi helen
I think your posts explaining why you have smouldering mm and not mgus illustrates the complexity of myeloma and why there is understandble confusion in establishing the citeria of each diagnosis ‘modern technology (flow cytometry) however is starting to fill in the gaps in the knowledge of the above .Unfortunately the complexity makes…[Read more]

Hi Vicki,

I have not been posting much as we are still watching and waiting but Phil’s relapse has now been happening since August 2013 and new treatment is now imminent. PP up to 10 but fatigue is getting worse and bone pain is increasing