[DaiCroParticipant]

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 am happy to continue to stay in remission.

An interesting thread and I wonder how many other Bence Jones(ers) we have on board?

Dai.

[DaiCroParticipant]

[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 my daily life would improve by about 80% without it.

Still, while that is all I have to worry about I will gladly bear it.:-/

Dai.

PS. I am not sure whether Poems syndrome is a condition or an invitation – but I hope that if its the latter we are not expected to make the list above rhyme.;-)

[DaiCroParticipant]

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.

[DaiCroParticipant]

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 neuropathy turns my feet into lumps of clay after a couple of minutes of straight walking. I don't need (or won't use) sticks but my mobility has been severely compromised.

DLA has nothing to do with sickness benefits, it is due to your condition not your circumstances. Its best to register now… even if you only get the lower level it is relatively easy to step up rather than start the process if or when it kicks in for real.

The online DLA site is pretty good IMO.

Dai.

[DaiCroParticipant]

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.

[DaiCroParticipant]

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 – alright for some.

Good luck with your treatment.

Dai.

[DaiCroParticipant]

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.

[DaiCroParticipant]

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.

[DaiCroParticipant]

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 address:

*****@myelomaforums.com

Include this full e-mail (particularly the headers).

Message sent to you follows:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I have had to restore the website from backups twice and I know we have
lost a few posts from some real people along the way. I need your help to
keep these attackers off of our website. email me at ********@hotmail.com
if you start seeing spammers or people abusing. We have been getting
thousands of registration attempts. I have made it harder to register but
it seems that someone is custom programming their attacks and If I dont get
your help to keep up with it I will be forced to shut down the website…
I cant do this on my own with 500 members.

Thanks,

Andy

P.s. if you want to be an active moderator, please email me.

—
Andrew Smith

http://www.myelomaforums.com

[DaiCroParticipant]

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 a 😀 and a 🙂 with an occasional >:-).

We need you sister. 😎

Dai xxx.

[DaiCroParticipant]

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.

[DaiCroParticipant]

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.

[DaiCroParticipant]

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 beneficial in helping you in getting out and about again as well as finding Michael somewhere to rest where you know he would like to be.

Of course he will always be alive in you and at the end of the day that is what really matters.

Dai. xxx

[DaiCroParticipant]

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.

[DaiCroParticipant]

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 signs of a cold. I tend to use it when someone near me has a cold and I often use the spray as a preventative when I go to crowed places (malls, cinema, social events etc.).

It may well be all in the mind but it has worked for me (so far) 🙂 so I swear by it.

Dai.

[Author]

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