[PerkymiteParticipant]

Hi all, I am doing a little bit of research trying to find out what Paraprotien level most people experienced right after Stem Cell Transplant and then 3 months after that, so, two readings.

Anybody who can remember that far back and would like to let me have their readings please post here, I would be grateful.

Sorry the research is not going to end in a medical breakthrough in the cure of Myeloma:'-( . A Myeloma friend and I have just gone through SCT and we were discussing it and thought it would be interesting to find out.

Thanks for any help
David

[brochoParticipant]

Hi David I cant give you an exact figure but I do remember being told they were too faint to quantify .Good luck with your research it will interesting to hear what the consensus is love Bridget x

[NettieParticipant]

Hi David

After my first SCT my paraprotiens were down to 5 (started out at 55!) and after three months went down to 3. Following my second SCT there was no paraprotien detectable and this has remained the case a year later (it had gone up to 13 prior to treatment). Hope this helps with your research but as this is such an 'individual' cancer I think that any results you receive may not actually prove anything but certainly well worth investigating!

Love Nettie

[EvaParticipant]

Hi David,
My paraproteins were zero before the SCT. Afterwards they went up to 3G/L which was considered quite alarming by my onc. They stayed at that level for two months and then began a decline over the next three months to zero. We don't know what caused the blip. I had a very bad fall in the week after I came home from the SCT. Some people believe that jolts can cause a rise in paraprotein. Some people also get some pp after the SCT which then can go down again.
Best,
Eva

[KeithH17Participant]

Hi David,My PP was at 28 when first diagnosed then was undetectable after SCT and remained so for more than 2yrs until relapse when it was at 7.
Statistics mean little as we all know MM is a very individual disease that effects different people in different ways.
Here's another statistic to baffle you…MM is hardly known in India/Pakistan and the people of these countries have in the main a different blood group to most of us in Europe and the USA.
Now is this because of the blood group it'self or the diet and conditions they live under or a combination of both?
The mind boggles and the only certainty I know is I start my 2nd Cycle of Velcade on Friday and good old Dex,what would I do without him?
Happy days are here again…….

Keep on researching dear friend…Keith.

[GillypearceParticipant]

Hello David, I had my SCT in September 2010 so am now 4 months post – I have had 3 blood tests since that have all showed that my para protein is at 4 – my bone marrow biopsy was myeloma clear which meant (according to my consultant) that I am in remission. I am now on no treatment or medication and returned to work yesterday. Just have to keep my fingers crossed until April when I have my next appointment.

Love and best wishes
Gill

[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

[GillypearceParticipant]

Hello David, – Ive got a leaflet from the myeloma UK nurse which is called 'How do I know if my treatment has worked?' and on table 2 – Measuring response to treatment it says Complete remission response (CR) No detectable paraprotein in the blood and normal percentage of plasma cells in the bone marrow OR absence of myeloma cells in the bone marrow – which I'm guessing is me. All I no is I feel ok when I wake up in the morning and the less treatment I have to have the better. My PP was 24 at diagnosis in August 2009. I did tell my consultant last week that unless my levels rise dramatically there is no way I'm having a bone marrow biopsy done again and he said that was ok. Hope this has helped – maybe Ive got it wrong and I'm not in remission .

Love Gill

[PerkymiteParticipant]

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

[zasrsParticipant]

Hi David

Gordons pp went to nil after his 1st sct quite quickly i think then rose again 6 years later, spent two years on rivlamid and 'friend' dex, then rose again, 6 or 7 cycles of velcaid the another sct, we went to kings two weeks ago but dont know what the pp was as it takes quite a time for the result, as i am sure you know!

Have no idea what the values were at each time, we always seem to and still do try to ignore this wreatched mm,and hope it will go away, it never does though!! Youd have thought we would have learnt by now!

Today is gordons 9th anniversary of mm diagnosis, hopefully a cheery thought to old and newcomers, he is still working with his beloved red tractor.

Love to all
Sarah
Sarah

[GeorginaParticipant]

Thanks Sarah. Knowing Gordon has been living with myeloma for 9 years is comforting. I hope he is having a great time on his red tractor. My nephew would be very jealous as he loves tractors (he's 4!).

to answer the question on paraprotiens, my mum's were too faint to quantify after her transplant and remained at that level even when she relapsed 10 months later. It was her serum level test which started rising.

Best wishes
Georgina

[konrad01Participant]

David,

Thanks for this thread – is it possible to get SCT if one is still on the borderline (23/24)?

John

[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

[DaiCroParticipant]

Hi David,

I was fortunate to achieve (0) after my CDT and was still there when I went in for my one and only SCT. I have just had my 10th post SCT consultancy and I am still at (0)… but I have Bence Jones – which means I have never had any problems with paraproteins… my reading are based on other values but the results are the same and I am happy to continue to stay in remission.

An interesting thread and I wonder how many other Bence Jones(ers) we have on board?

Dai.

[brochoParticipant]

Hi David and Dai I have never been told I have Bence Jones yet my paraprotein levels bear no relation to any myeloma ativity My consultant uses the serum-free light chain test but even that was showing low values despite very significant myeloma progression and a large tumour My doctor now jokes I am the most difficult patient they have , at least I think he means as far as monitoring !! love Bridget x

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