Hi David,

I recall a few occasions where it has taken a few months for the readings to record a true value due to residual leftovers after the SCT's. I am coming up to 12 months SCT (mid-March) and I often have aches, pains and stiffness. My consultant has told me not to worry about such things as they are residual aches and pains due to the…[Read more]

Hi David,

I was fortunate to achieve (0) after my CDT and was still there when I went in for my one and only SCT. I have just had my 10th post SCT consultancy and I am still at (0)… but I have Bence Jones – which means I have never had any problems with paraproteins… my reading are based on other values but the results are the same and I…[Read more]

[i]'Smouldering/asymptomatic myeloma, MGUS (Monoclonal Gammopathy of Unknown Significance), AL amyloidosis, Plasmacytoma, Waldenstrom?s macroglobulinaemia and POEMS syndrome.'[/i]

Hi Ellen,

I don't know if peripheral neuropathy is a related condition or a side-effect… it certainly feels llke a condition to me.:-) I honestly believe that…[Read more]

Hi Gaye,

I hated taking the dex when I had my CDT, until Janet proposed mixng them in a small pot of yoghurt – which sorts of glides down without being chewed.8-)

I know you will keep us posted re the pompoms (there you are Min) and I want you to know just how much I appreciate your commentaries on these treatments etc.:-)

Much love xxx

Dai.

Hi Sean,

I remember the nightmares of filling in all the requisite forms especially those concerned with pride but my brother who works for the DHSS (or whatever it's called now) insisted I did it – and he was right.

I am registered disabled with full DLA benefits. I can walk for short periods but my back seizes up and my peripheral…[Read more]

Hi John,

I've not heard of the survey but I'd be interested. I was told that MM is not hereditary and I was also told that my history of anaemia was also purely coincidental… I'm due for my eight week check-up next week, I'll enquire about the survey then.

Dai.

Hi Phil,

I enjoyed the video. I'm a great believer in serendipity and over the last few months I have got in touch (or rather they have found me) with my old band from the 80's and we are looking to do a similar 'tour'.:-) 'Sod's Law Alive & Limping' – hopefully in the spring when our lead singer gets back from his winter break in Spain -…[Read more]

Thanks Andy,

One reassured member.:-)

I realised that it was possibly/probably not this myeloma forum but the admin and Andy bits made me suspicious.

Dai.

I agree Michelle, that's why I have posted it here… so that anyone who receives anything similar can avoid it until proven safe… although I imagine it is bogus.

Bogus emails are bad at anytime… but targeting a forum such as this?

Dai.

This is the email I received from admin at M UK. including the message from my mail blocker.

The following is an e-mail sent to you by an administrator of "Multiple
Myeloma Forums". If this message is spam, contains abusive or other
comments you find offensive please contact the webmaster of the board at
the following…[Read more]

I wish you all the best for the trial, both of you.

You are an inspiration Gaye, whether you like it or not (but I suspect that you like it really 😉 )

You have been a rock for me since I joined this gang and I truly appreciate your selflessness in sharing, guiding and generally bucking up.

Whenever we are feeling :'-( you always offer…[Read more]

They say that Teignmouth is beautiful in the spring… why not book a few days – make a date and work towards it, as Tom says, one day at a time.

Do whatever feels right for you Roz – perhaps it is time for you to be self-centered, even selfish… in terms of what you want, where you go and what you do. Its allowed you know. 🙂

Dai.

Excellent news David. It sounds like you are good to go… wherever you like… within reason.:-)

As the great, late Woody Guthrie used to say… 'Take it easy but take it'. 😎

Dai.

Hi Roz,

My thoughts were with you on Friday, I appreciate how difficult it must have been but well done you for getting through your reading.

I agree with the advice about taking a holiday and perhaps the best way to do it is to go to Teignmouth, in the early spring, when life is recycling and take Michaels ashes with you. It could be…[Read more]

Hi Keith,

I'm sorry my take was proven wrong but I wish you all the best in catching it quickly and maintaining a repression of your MM.

Regards

Dai.

Hi Amelie,

It is good to hear John's positive news. I think that we are more perceptible to infections in general because (I believe) infections and bone marrow are closely connected and our bone marrow is weakened by the disease.

There is a product here called Vick's 'First Defence'. It is a nasal spray used to fight infection at first…[Read more]

Thank you for that Min, I'll be on to them first thing tomorrow.

Dai.

I have my dog Morris a 13.5 year old Border Collie who is Okayish. We took him to the vets when we came back from our holiday because he was getting very stiff after walks. The vet said he didn't want to treat him at this time, that his stiffness was simply a sign of older age and that while he had cataracts in both eyes there was not much to do…[Read more]

Good luck with all your tests Keith – unlike the lucky Mr Perky… who ONLY had a great big turnip of a tumour on his neck, I had a tumour which had crushed a vertebrae in my lower back and widespread damage, from pitting to opencast mining scattered around my skeleton. Now the reason I mention this is because my consultant told me that nearly…[Read more]