Well done Keith, I was told at my last appointment, 3 weeks ago now, that I was in “excellent remission” so I know how you feel, “Good init”. My next appointment is 27th June so keeping my fingers crossed that it is supported by the latest blood test.

kindest regards – vasbyte

David

Not quite sure I understand “he is recommending you have Chemo but it is not because of the money”. Revlimid is very expensive.

If your Myeloma has relapsed, and you do not give any details of that, you would naturally go onto the next phase, provided that is you want to.

Sorry I could not be more helpful

Kindest regards – Vasbyte

David

Like your Dad I have Myeloma and Prostate Cancer. I am on third line Myeloma treatment, I was diagnosed with Myeloma 2009, and with advanced prostate cancer 2011. I am in complete remission with the Myeloma on Revlimid. something I have never achieved in 5 years of SCT and Velcade. My prostate is an agressive one and I am being treated with…[Read more]

I guess your MUm’s appointment must be coming up this week. Are you gong with her, if not you should? Take paper and pencil if you have not got a good memory to make notes, some people even take mini recorders, it might be a lot to take in at the first meeting.

I wish your mum all the best of luck

Kindest regard – vasbtye

David

That is good news Andy. I have always marveled at your pp readings balanced against the things you do. 11.25 is not too bad and for you it is a bl888y miracle. I bet you go lower at the next treatment. I think your totally committed, with that touch of devil may care, attitude certainly helps you live with Myeloma.

all the very best -…[Read more]

I think all forums go through phases. The change over of forum format was a little traumatic some people just gave up posting I think. It will come back.

Kindest regards to all – vasbyte

David

I have had the taste problem since 2009. I found I could only really taste strong tasting food. I developed a passion for Peanut butter and raw Spanish onion sandwiches!

I have now moved onto Revlimid and surprisingly went into remission after the 2 cycle, I have now done 9 cycles.

My poison of choice has always been Guinness which I stopped…[Read more]

Best of luck for huby’s cement job and SCT.

The SCT can be a bit dauntin but it is well worth the effort in my opinion. I did not get into remission from it, pps only went to 2.9, but they stayed that way for a number of years.

kindest regards – vasbyte

David

Hi Maureen, cannot help you there I did only 3 cycles of Velcade and got pulled off it, I had PN bad.

However the good news is I went onto Revlimid and at my last consultation, Friday last, I was told that “On Paper (i.e. my blood reading) I am perfectly normal now.

Kindest regards – vasbyte

David

Sorry to disagree with you Eve but AA is not a right. You have to establish with the issuing authority that you have a need for it. This is done by filing a very complicated and detailed form. The best people to fill this form out for you is a Macmillan adviser.

Sorry you have had to join us David but take the advice and get in touch with…[Read more]

Hi Rosie,

I was interested in your comment that “he has been on Revlimid for 2 years now”. My understanding is that the MHS gets Revlimid free after 16 or is it 18 cycles of treatment. Is this the case with Jeff he would have done 24 cycles in 2 years. And, as a matter of interest has he reached Good Remission on it or just a low PP…[Read more]

Hi Michellew, Slightly confused 2% of all newly diagnosed cases of cancer? Does that mean 98% of all cancers are other cancers? If that is the case then Myeloma is surely a rare cancer, which is what I have always understood. Approximately 4,000 pepole being diagnosed a year is the standard figure I believe.

What about the other long time…[Read more]

I was going to post ant then I read everybody’s efforts and thought they have covered it all.
However, my penny worth is:

Definitely buy the folding walking stick. Myeloma attacks the bone and failing over and breaking a shoulder bone is really not an option you want to live with.

Definitely drink the water, I was told 3 litres a day, and it…[Read more]

Hi Rosie, I have been on this site since 2009 and I have not heard of “myelomatous deposits”. Sorry, I realise that is not much help to you. That just may mean that they, whatever they are, are generally referred to as something else! You do not say whether any treatment was recommended which would give a clue to what myelomatous deposits…[Read more]

Aha. But I have the answer.

Many years ago, I was being recruited for a job. The recruiting company put me up in a very 10 star swanky cottage hotel, in Wales. This was around 1980 and the wine list started at £60 a bottle! Two guys discussing buying Oil Wells sat discretely over the room from us. We had a wonderful dinner but the wife…[Read more]

Well you guys are really going through the mill – I feel like a fake when I have my few problems. However, I know what you mean about the difference in treatment. Andy’s is excellent through to Slim who is wasting every-bodies time you would think.

Recently I had a pain in the leg my wife dialed 111 and we were asked to go to hospital to see…[Read more]

Hi Tina, have your friends had Myeloma? Listen to your body Tina it is its opinion that counts.

What does the Consultants say about your Back Pain?

Kindest regards – vasbyte

David

Hi Sindy, Welcome(?) to the Myeloma site.

You will find all the information you could ever want to know about Myeloma here and added into the mix you can talk to other suffers about their experiences so do not be shy if you have a question Ask.

Kindest regards – vasbyte

David