My condolences to your family.

As many have said on here,Scott always seemed to be beating the odds,I remember him talking about SCT although kidney functions were not great.

He gave lots of people hope and this is what this site is about,hope for a cure plus watching people who seem to be full of hope and beating the odds,Scott is one of many…[Read more]

Hi john

Like Andy I haven’t had SCT and I am in remission following six lots of CDT. Everyone is different. I feel you have to weigh up quality of life against gains. I am in my fifth year post diagnosis.

Best wishes in your decision making.

Mavis

Hi Mervyn

I just caught up with your post. You didn’t say what age you are. I was 65 at diagnosis, had a plasmacytoma removed from my spine then radiotherapy. 18 moths later I went on CDT and after six lots was in complete remission. I am now in my fifth year post diagnose. I didn’t have a SCT and seem to have done as well, if not better,…[Read more]

Dear Jeff

So sorry you have lost your Dad, and so soon after diagnosis.

Do be kind to yourself. It does take time to accept the reality of loss and then begin to gradually come to terms with your loss.

Love and best wishes.

Mavis

http://myeloma.org/ArticlePage.action?articleId=4359
there you have it !!Mike

Dear Jane and Chrissie .Thank you for you support.
davefletchers thread on yvonnes topic is worth a look .
Mike

Dear Dave
Thank you very very much for your imformation.I have had a negative mri but positive pet scan which I can now regard as a genuine first myeloma bone lesion and not a false positive .There are few references in the literature comparing mri and pet scan in myeloma (usually comparisons with skeletal xray survey .There are proposals to…[Read more]

Woops bone marrow 60% plasma cells !! pet scan uptake on T11 (thoracic spine ) not seen on mri , hb down again to 11.5/115 (11.1/111 = 2gm /20dm drop =anemia =active myeloma )
on the edge of the cliff
appointment on thursday to discuss options
Mike

Hi All

I am happy to say that my first clinic visit went well and bloods were fine. Thanks Peter and Matt for your kind messages. Thanks for the advice Graeme, since coming home I have hardly been able to do anything as it’s so much effort! It was quite a challenge to get ready and go to clinic and I certainly won’t be going out for a while…[Read more]

Hi All

Thank you for all your kind messages and support. I am actually home now, earlier than expected! I did take all the advice given here and it certainly helped. I think I have been extremely lucky so far. I had the expected side effects from the Melphalan, mainly sickness and a slight sore throat but apart from that I am fine! The care I…[Read more]

I was shocked to hear of your dads passing. My deepest sympathy to your family

Jean

We also have the Braun ear thermometer. My DIL brought a wand thermometer – doesn’t touch the skin – just wave it across the forehead. She said it’s brilliant

Jean

Hi kath,
ERRor BMB plasma cells 1% (?0.77%) not 77%
Just read you r other thread on newcomers !!
Apologies Mike

Hi Karen,
Sorry to hear your news but you seem to have accepted your fate and indeed got on a good regime(?outside a trial ?).
I am just about to have BMB today and pet scan tommorrow ;so I think I am not far from treatment.
pProtein 38 hb 11.9
see smouldering forum
Regards Mike

Hi Kath and Yvonne
Just to confirm the papaprotein levels can fluctuate a bit by one or two each visit ;but a sequential rise at each vist is more significant and this best assessed by more frequent and shorter interval testing (4 or2 weeks).
I know this from personal experiance over the last 10 months and am having a bm today and pet scan…[Read more]

Thanks Vicki and Colin. I have a double room and bathroom to myself, wifi sorted and central line put in. All good so far!

Best wishes
Andrea

Thanks Michele and Suzi, I feel alot better with these tips! All I have to do is ring tomorrow morning to check there is a bed available!

Best wishes

Andrea

Thanks Rebecca, I have bought a nice fleece blanket and also a fluffy warm bed jacket. My daughter is going to make a countdown calender I like that idea! I have lots of books so hope I will be up to reading. That’s really good you are enjoying your remission,long may that continue!

Best wishes

Andrea

Thanks for your kind message Dawn, I will let you know how it goes. My paraprotein only got down to 11.5 after 9 cycles of CTD. I think this may be because I have a Chromosome 13 deletion which may respond better to Velcade which I still have for future use.

Best wishes to everyone

Andrea