[jeapal23Participant]

Interesting thread, My husbands paraprotien is around 50 on average has been as high as 69 but he has no treatment. They say because it is not causing damage to the bones or kidneys they are holding off. I find this hard to get my head around, why wait when you can see such differences in the levels after treament, why wait until the damamge it there before treatment. He tells me not to worry, the doctor but I still do.

[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.:-(

[AmelieParticipant]

Hi David,

John's protein was 37 when he was diagnosed. After sct it dropped to 3.7 and further down to 2.4. Now we are awaiting the result of his latest blood test.

I still haven't figured out what the paraprotein level means regarding to response. John was told there was no evidence of the disease in his bone marrow – but whether that or the paraproterin level counts the most I can't find out. I have been reading a lot and I asked the nurse from this site, but the answer wasn't completely clear to me.

Love
Amelie

[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

[AmelieParticipant]

Ok I am looking forward to hear what they tell you! Somewhere I read that "normal" people have a M component between 0 and 5 which means as long as it isn't more than 5 everything is fine.
However I find everything I have read quite unclear and contradictory.

Kindest regards,
Amelie

[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

[GillypearceParticipant]

Hello David, you where right and I was wrong – it appears I heard what I wanted to hear at my last consultation and got the words remission mixed up with partial response !! Just received a copy of my clinic letter and its there in black and white – now I have to tell my family I got it wrong – s – At least I am in a good stable plateau phase and I'm back at work so thats something. My last pp result was also 4 again. My bone marrow trephine result was 5% polytypic plasma cells whatever that means. Never mind onwards and upwards – tomorrow's another day.

Love and best wishes
Gilly xx

[mhnevillParticipant]

Hi david

I'm very glad you opened this thread because for all my reading i can't make sense of the different readings. My Consultant just gives me the para protein level and I was just told, when originally diagnosed, that my bone marrow just showed traces of protein. I have been trying to make sense of all this – especially as I read the American site "Myeloma Beacon" and they seem to go overboard with blood readings. I wondered if I should as the Myeloma UK Diary does give space for keeping all the readings!

Maybe it is something we could ask the Myeloma Publication to tackle – how the various readings relate to each other, what they really mean in the different situations we all experience. What i need is a book like the "Idiot's Guide" I have with various computer programmes!!!

Keep asking the questions.

Very best wishes.

Mavis

[PerkymiteParticipant]

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

Kindest regards

David

[AmelieParticipant]

When is your next appointment? I am really curious to hear what they tell you.
Here I have copy pasted my question and the response from the nurse:

My friend aged 59 was diagnosed with mm this March. At that time his M component was 37. In August he got a sct and at the first monthly check the M component had dropped to one tenth: 3.7. On the next check it was dropped to 2.4. He was told there was no visible sign of the disease in his bone marrow (they made a biopsy). However the doctor didn't tell if he got a complete response or very good partial response. Could you tell me that? Thanks in advance!

Dear Amelie

Thank you for your email. My name is Ellen Watters and I am the Myeloma Information Nurse Specialist here at Myeloma UK. Although I am unable to comment or give advice on individual cases I hope that the following will help clarify things for you.

A complete response (remission) means that there is no evidence of myeloma i.e. that a bone marrow biopsy shows less than 5% of plasma cells or that there is no paraprotein detected from blood tests. However, most doctors are very pleased if a patient?s paraprotein reaches a stable plateau after a stem cell transplant. This means that there is still some evidence of paraprotein but it is at a low but stable level. If there is a greater than 90% reduction in paraprotein this would be classified as a very good partial response.

It is important to note here that it is not just how much the level of paraprotein has dropped by after treatment but also how long it remains at low levels (known as the duration of response). Patients can continue to respond to a stem cell transplant for up to about 6 months after the procedure, so your friend?s paraprotein may fall even further.

I hope that this has been of some help, but please do not hesitate to get back in touch if you have any further questions or would like to talk things over. I can be contacted directly by email as before or on the freephone Myeloma Infoline 0800 980 3332, which is open Monday to Friday 9am to 5pm.

Kind regards

Ellen Watters (RGN)
Myeloma Information Nurse Specialist

[AmelieParticipant]

Just read a bit more on this topic here:

http://www.myelomabeacon.com/news/2011/02/02/bone-marrow-examination-can-predict-progression-of-multiple-myeloma/

[DeepaniParticipant]

Hi,
My Father is Sri Lankan and was diagnosed with MM just 6 months ago. I don't think that the indian subcontinent is immune from MM.

[Author]

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