[PerkymiteParticipant]

Hi Amelie, I am assuming you are referring to the Paraprotien number and if that is the case 5 is not that high, mine went up to 33!. Lately I note people referring to a Bone Myeloma measurement that is in percentages and again 5% would not appear to be high.

Every time I have talked to my Consultant about my Paraprotien measurement I have always had the answer, ?It is just not about Paraprotien(PP) in your blood, we take into consideration all sorts of things, like White Blood Cells etc.. to give us a picture of what is happening. So your PP could be going up but that is not necessarily worrying at this point in time.?

Try not to worry.

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

Hi Dave, Welcome (?) to our little group. Myeloma affects everybody differently so you cannot set out any rules or firm guide lines. Everybody goes roughly alone the same path but that is about it. The good thing is that the group here has a wide experience of Myeloma and somebody will have been there before you. You sound as if you have the one thing you do need however in abundance and that is determination.

I did not find the SCT process that bad. I had a real bad sore throat and was ill with a bug during mine but all in all it was well worth doing, and I am 68.

The Myeloma UK site is excellent and you do not really need to look any further for good, accurate up-to-date information. They also have a resident Myeloma Nurse so if you have any problems that need a discussion with ?somebody who knows? then you can telephone her for free. I do not know where you can get a better deal 😉 😀

Kindest Regards ? Vasbyte

David

[PerkymiteParticipant]

That is interesting I had a DVT and a following PE about 3 years ago. As it happened I had to go to a chiropodist some months later and she comented on my very dry feet and ankles.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Yes, it is about 6 days if my memory serves me right. 0.5 is the go home point for neutrophils I believe but do not forget the rest of the blood measurements have to be correct as well such as White Blood Cell count.

It is a difficult time; I know what you and your mum are going through, having been there and bought the t shirt myself. Just hang on in there it will come good I am sure.

I lived on Protein shakes, made with milk, jelly, ice cream and bananas or tangerines for some days. My throat was so bad I could not get anything else down. Sickness and diarrhoea are almost par for the course although I was lucky and did not suffer too much from either.

12 months since my SCT and I am leading a near normal life. I only take antibiotics at the weekends and of course my bone strengtheners Loron every night. So it is worth it.

Kindest regards ? Vasbyte

[PerkymiteParticipant]

Hi Helen, Sorry for the late reply my wife and I have been at Mousehole, Cornwall for the last two days celebrating our 49th wedding anniversary, a real nice trip.

I was diagnosed with Myeloma when I broke my neck getting out of bed, yes literally. Fortunately, although I was a fit as a fiddle, I knew something was serious wrong and I just lay back on the pillow holding my head square. They repaired my neck and after about 6 months trying to get enough pesky Stem Cells I did go the STC route. It was not pleasant but I would do it again if I had to although, at 68 I do not believe I will be given the chance, toooo old. I am on a plateau at the moment ? we apparently do not talk about remissions or partial remission at my Cancer Centre. I have the bog standard Myeloma ?g? and my PPs at the time I broke my neck was 33 it is now 2.2. I go for my next check up early January 2012. My original prognosis, I asked the consultant to give it to me straight, was 2 to 3 years, as I had already had it approx 2 years, that was July 2009. I am determined to make my 50th Wedding anniversary next November. At the moment I feel great and am completing a full life. I do a 3.5 mile walk most mornings and my body just fought off a nasty cough and cold without any help!

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Taunton, Somerset (and NO I drink Guinness not Cider;-) ). I am being treated at the Beacon Centre Musgrove Park Hospital.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Thanks Helen, so my Tumour was in fact a Plasmacytoma. The Consultant informed me that after looking at my medical records I had had undiagnosed Myeloma for at least two years, hence the 2/3 year prognosis. We live and learn. Or at least we hope we do :-/

Kindest regards

David

[PerkymiteParticipant]

Congratulations and thanks for the pictures. The very best of luck to you both.

Kindest regards

David

[PerkymiteParticipant]

Keep strong Roz. I am sure it will all work out for you in the end.

Kindest reagards – vasbyte

David

[PerkymiteParticipant]

What is the difference between a Plasmacytoma and a Tumour.

I had a large tumour which ate the 4th vertebrae in my neck. The following skeletal survery showed no other tumours or lesions. None of the Consultants has ever mentioned the word Plasmacytoma when discussing my tumour.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

What is Lyrica?

Kindest reagards – Vasbyte

David

[PerkymiteParticipant]

Hi Dave, Welcome to the site. I would not worry about the SCT I had one 11 months ago, I am 68, and I coped all right. I am not saying it is a walk in the park, like Tom, because people all react differently to it, so be wary and ask lots of questions when you get near the date to arm yourself.

kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Eve, Actually the number 4 bus is the one we use to go into town sometimes. However, I actually use the term ?if the No4 bus does not get me first? as a euphemism for all the things you can die of, not including Myeloma, which I think would fill a No 4 bus easily!!!! I think euphemism is the right word?

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

found it, was a plumbing term used to refer to a tap that turns off water supply 😀 😀

[PerkymiteParticipant]

Thanks all for your condolences, you are a great bunch.

It just seems weird one minute I am laughing and joking with my Niece about MY funeral and how I was going to take my computer and mobile phone with me so she could keep in touch and the next I am helping her husband plan hers!

Over the years on this site I have come to realise how lucky I am, I am very fit and can keep up an almost normal life. Others of you, I know, have had to struggle so hard and my heart goes out to you. I know that the inevitable will happen, if the No 4 Bus does not run me over first, but I just pray, like us all, for a bit more time.

But, I have taken my Surgeons advice to heart and I have just about everything planned, from my wife doing the internet banking to knowing where the tap is to turn off the water if necessary, I have ordered the kerb set for my family grave, sorted out the Order of Service book and my funeral. And, finally I am making my own coffin. My Son, Daughter and Grandchildren are going to paint/decorate the panels and then I am going to assembly it all in my workshop. Now that is organised! However, not withstanding all of that, the most important thing is that they know how much this old man loves them all.

Kindest regards ? vasbyte

David

[Author]

Posts