[PerkymiteParticipant]

Hi Webb Team/Admin,

Just a thought could you expand the Personal Profile section to include a small "who are you" section. I note that a member has started the "Who are you" posting again and it would be nice to have that sort of information in the profile so you could look it up when reading a post.
Kindest regards

David

[PerkymiteParticipant]

Actually, that is a very, very good idea Mavis. 😛

Kindest regards

David

[PerkymiteParticipant]

yes – it did brighten my day:-D
cheers

David

[PerkymiteParticipant]

Yes Amelie, that is what a very experienced Consultant said to me. The Paraprotien level norm for most people is between 0 and 5. And, I still believe that to be the case. It is just where does the Bone Marrow measurement fit into all of this!

At my last appointment I asked if I would be required to give a Bone Marrow sample and my Consultants word were "No, we do not bother with that". Not said in an offhand way, more a statement of fact.

Kindest regards

David

[PerkymiteParticipant]

Yes, it is one of my questions for my next appointment.

Since asking this question it would seem the two measurements (bone Marrow Myeloma activity and Paraprotien activity in the blood stream) are independent however I do not know. I always thought that one reflected the other but it would appear not so!

kindest regards
David

[PerkymiteParticipant]

I did ask about this at my last appointment. My Consultants words to me were "You can now mix with the human race, just avoid people with colds etc if you can and be fussy about hygiene – otherwise enjoy life". And, yes, colds and bugs in general are more dangerous to an MM sufferer as you would expect them to be.

[PerkymiteParticipant]

for a bit of fun (must get myself a life sometime!) I googled it and it came up with this:-

[i]Falsely attributed to Gaius Petronius Arbiter. Quote is from Charlton Ogburn, Jr. (1911-1998), in Harper's Magazine, "Merrill's Marauders: The truth about an incredible adventure" (Jan 1957)[/i]:-S

Gaius Petronius Arbiter did exist and he was a Roman governor of some sorts.

[PerkymiteParticipant]

Thanks to everybody that replied.

If you read all the posts and from the information I have from other local sufferers it just reinforces the individual nature of this decease. I have yet to find two people who are similar never mind the same. I thought there might be a pattern of PP measurement after an SCT , but far from it! Ahh well back to trying to sort out my electricity bill.:-(

[PerkymiteParticipant]

Hi John,

I understand, and everybody is different and each hospital has their own way of doing things, that the normal process is that you have CDT (chemo) to reduce the number of Myeloma cells in your body, generally measured by Paraprotien but not always. Once they are down to a level acceptable to your Consultant he/she then puts you in for a Stem Cell Transplant (SCT).

I hope this helps

Kindest Regards

David

[PerkymiteParticipant]

whoa there. No, you are in remission I just got confused, sorry:-D

[PerkymiteParticipant]

Hi Gill,
I was very interested in your Bone Marrow being myeloma clear when your Paraprotien level was 4. I thought PP was a measure of the myeloma cells in your blood and hence bone marrow. Have a got something wrong here, which would not be unusual for me!

kindest regards

David

[PerkymiteParticipant]

Hi Keith, do you know why it has gone or has it just gone of its own volition?

kindest regards

David

[PerkymiteParticipant]

the very best of luck what ever it is Kay.

Kindest regards

David

[PerkymiteParticipant]

You know Sarah this site can make me so sad sometimes, not depressed sad just sad that some people can be so cruel or others can have such rotten luck that nothing seems to go right for them. And, it makes me realise that although I have a terminal cancer which will, if the No 4 bus does not get me first, be responsible for my death I have been so lucky in life. Please do not misunderstand I have had the heartaches and ups and downs of life just as we all have but I have always felt that somehow my dear wife and I would get through it together and we did.

I have so much support from friends and family that when I was diagnosed and given 2 to 3 years (if things go well) I felt I had started a journey, a walk. The path has holes and boulders on it that will make it difficult sometimes as it gets ever steeper. But all along the way are my friends and family walking with me, encouraging me, picking me up when I stumble, cajoling me when I get tired, helping me when I cannot reach up for help, but, all the time with me. I wish sometimes I could give just a little bit of my support to some of my friends on this site. And, that is why it makes me sad.
Kindest regards
David

[PerkymiteParticipant]

Hi Laura, Welcome(?) to our group. As has been said you are in the right place.

You probably have been researching on the web to find out more about Myeloma, a lot of it is quite scary and out of date. You have bags of good information on this site and they will send you a free information pack that will give you all the details about Myeloma you could ever need. So my first tip is to get yourself really well informed about the disease and its affects, like doing an O level. This will allow you to counter your Mum?s fears.

Next tip is to get some support, you will need it. As has already been said introduce yourself to the Macmillan nurse, [u]this is really a must[/u]. You have two other lines of support available; one is the MyelomaUK nurse – the free phone number is on this site. The other is this group. Most of what you are about to experience we have been there, done that and thrown away the t shirt. So feel free to post; frustrations, anger, good times, bad, just want some advice it does not matter you will always find somebody here that will llistern and where they can help.

Kindest regards
David

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