Hi Eve, Yes I take your points and agree with them.

Now you mention it when I was first diagnosed, JUL 2009, I had a chart given to me with the blood readings on and I would ask to have it filled in each appointment. If I remember rightly it always seemed a lot of trouble, for the Consultant that is, at the time and I think I gave up in the…[Read more]

Well the way it works here Eve, in the Beacon Centre, Taunton, Somerset, is that I give blood 5 days before my Appointment. I then get the results, if I ask for them at the appointment. I find, and perhaps it is my age, that I have not got time to think about the implications then. Normally, I ask for the PP count and I get the rest IF it is…[Read more]

I have read the brief several times and correct me if I am wrong but this is a meeting of Laboratory staff, and or, people who work in the background, who supply information to Doctors who then supply that information to us.

When in a chain of information the question is always one of interpretation. We have all, I think, have heard of the…[Read more]

Sorry about this answer Sarah, but "how long is a piece of string?" :-/ . We are all different and as such some take longer than others.

Personally I would not let anyone near the house for the first 4 weeks, my wife and I had a Christmas on our own ( I came out of the hospital on 15th Dec 2010) the first time in 18 years ? no children or…[Read more]

Hi Sarah, Welcome(?).

My first piece of advice is to stop looking on the internet! A lot of the information is out of date and the treatment of Myeloma has moved on since most of it was put up. Two sites worth investigating are this one; it has a host of information on it and is up to date and specific to Myeloma, the other one I would…[Read more]

Glad to hear everything is going well Keith. As you say keep going.

Kindest regards – Vasbyte

David

Hi Kieth,

Remission is not just the PP level as I understand it, although that is a main indicator. I have been told that they look at Blood Measurements of various indicators like White Blood Cell count, Neutrophils etc… . If the PPs are ZERO and the rest of the measurements are within their correct zone or parameters then that I think…[Read more]

Sorry to hear the bad news Gina. May your God walk with you at this difficult time.

kindest regards – vasbyte

David

Hi Glyn and welcome. Your hubby seems to be going for the full monty, auto SCT and Allo SCT. I wish him the best of luck.

Kindest reagards – vasbyte

David

Sorry getting mixed up in my old age. I was thinking of a Kazoo which was like a penny whistle but made an orrible noise! Gazoo was a little green man in the Flintstones I think LOL 😀

Kindest regards – vasbyte

David

I think you mean Gizoo.co.uk Min. They are under Electronic Gadgets sub menu "phone and TV gadgets" at 29.95 each.

Kindest regards – vasbyte

David

p.s. If you want to buy a Gazoo (can any body remember them)Gazoo.co.uk is the place to go. All sorts of Gazoos in different colours 😀

Hi Ted, I am with you on this one, when a thread gets tooooo looooong it becomes a real pain scrolling down to find replies you might have missed 🙁 .

I think PP level is one area all the Consultants seem to agree on. The stock answer seems to be "they look at the decease?s progression and PP level is just one indicator". I used to always…[Read more]

That is really great news John, Celia is quite a trail blazer:-D

I think it is also good news for the Forum and all the people who make the effort to post their various bits of information, it must be very rewarding for them as well as yourself to know, by participating, they have actually helped another sufferer.

Kindest regards ? vasbyte

David

I know your problem Gill I too have no sense of tone and am as such a very lousy singer, but as no one was home I sang it out loud and it felt great LOL.

Kindest regards – vasbyte

David

Hi Jim, Just a welcome I am afraid, I was not on the Myeloma XI trial or anyother trial come to that. I think at 69 I am tooooo old:-D . I wish you the best of luck with your treatment. You will find all the information you need, up to date information that is, on this site and you will find on this forum a real nice bunch of…[Read more]

I had my SCT in Nov last year and I still get the odd itchy spot. It is normally one or two or sometimes just a single spot. They seem to come up and disappear just as quick. I would seek medical advice if it is a persistent rash you might need a stronger dose of Anti Virus tablets.

Kindest regards ? vasbyte

David

Hi Peter, thanks for the information I have never attended a Myeloma Information Day. My nearest will probably be Cardiff I think, but I cannot make 5th November. I played with the idea of going to Birmingham on the 26th, after you kindly did all the research, but decided to wait until Cardiff comes around again next year.

I have been trying…[Read more]

I think you are correct their Bridget, nothing is going to get done until the normal Mon- Fri staff are back. You are really put into a holding situation with the On-Duty Doctor, who could be a Gynaecologist -Mon to Fri – keeping an eye on you? But, and it is a big but I suppose they do have access to a Haematologist consultant IF…[Read more]

Hi Gilly, glad to hear you are doing ok. I am slightly behind you with my SCT in Dec last and my PPs are still low at 2.1.

What are supposed to be the beneficial effects of Manuka Honey then? I should say I am not really into alternative medicines etc… but I am always willing to listen 😀

kindest regards – vsabyte

David