[GillParticipant]

Can anybody give me some idea of when pp levels are classed as high/low/OK?

Gill

[PerkymiteParticipant]

When I broke my neck my PP level was 39, that was its highest point. Now I have had my SCT my last reading was 2.2. The lowest reading I have ever had was 1.8 two months prior to my SCT.

I was told early on in my diagnosis that most people would have a 1.5 pp rating – the difference being the PP is not active, I think, but I do not know.

Kindest regards

David

[adminKeymaster]

Hi Gill, my pp level before treatment was 6 (I am day 24 of ctd). Just 6 weeks previous to that, it was 2 and this was classed as 'very low'. At that stage, I was still being investigated for what was thought to be a common kidney problem and a pp level of 2 was not suspicious. I have amyloidosis, a complication of myeloma, and I understand that in conjunction with pp levels, my light chain levels are also monitored. Tracey x

[DebsParticipant]

Hi Gill,

I think it is REALLY individual. I was up at 32 when I was first diagnosed but was still asymptomatic. It rose to 50 before I started treatment (and even then it was touch and go whether I really had bone pain). I know others who didn't start treatment until their pp was 70. I think it's about the other symptoms surrounding you, and your bone marrow readings.

I'm down to 23 (and have just started new treatment on velcade) but they would have done a transplant on 23. Phew, pleased to get velcade after all, even though I'm feeling very tired so far.

Deb x

[MariParticipant]

Dear Gill,

I think as Debs says its very individual. Steve was diagnosed with smouldering myeloma in 2004 with PP levels of about 7. These increased slowly until he ended up with a tumour on his spine in autumn 2009. He was told they would not start treatment unless his PP levels reached 30. However they were 24 in Novemeber 2009 and they decided to do nothing despite his back pain. When he had the surgery on his back in Jan 2010 his pp's were 33. This is the highest they have ever been. He started CTD in Feb 2010. This was successful and by June he was down to 'undetectable' but by August when he was having the work up for his SCT they had risen to 17. We were all over the place as you can imagine, however they decided to still go ahead with the SCT and after that his pp's are still undetectable after 6 months. I think the doctors decisions depend on so many other things such as general blood chemistry and bone marrow biopsys and trephines.

I hope all is well with you and Stephen, and his current batch of treatment is going well,

Love Mari xx

[PerkymiteParticipant]

That is interesting Mari. Did I read your positng correctly, that Steve's PP level was 17 prior to SCT. Can you remember what his pp level was when he did the Stem Cell Harvest?

kindest regards

David

[BADGERParticipant]

Hello Gill

I wasn't told what my paraprotien levels were on diagnoses only my Bench Jones figures which were 22% after my CDT treatment my para's were in a band to fient to measure and still are I stayed on 100mgs of thalidomide for twelve months stopped because of PN not had any treatment for a year now except a monthly infusion of pamidrinate. I was diagnose Jan 2009 not had an SCT due to major kidney damage

[GillParticipant]

I am not sure if Stephen heard his chemo nurse correctly (I shouldn't let him out on his own:-| )

He remembered to ask about platelets and pp levels and was told that his platelets were up from 40 to 70 and should be 140 and his pp level was 70 which sounds high. He also got told that his bp was fine. mm or not that man is always so laid back he'd face a third world war calmly!!

Thanks for your replies All the best Gill

[MariParticipant]

Hello David,

Yes it was 17 the week before he had his Stem Cell Harvest. We were told that the myeloma cells do not survive the feezing and defrosting process so any included in the harvest would not have gone back in.

It was pretty scary that they came back so quickly between CTD and SCT tho

Mari

[MariParticipant]

Dear Gill,

I find they are very good at Kings, and will give you a printout of the blood work if you ask for it. We also get a copy of the letter from Dr S ( now prof :)) and that usually has pp readins in it

Mari x

[GillParticipant]

Thanks again to all for your replies. Stephen will be in Kings later this year for a second SCT but never has to go there at the moment. Maybe we can get a printout regarding pp etc from the hospital he attends regularly thanks for the iformation Mari

[PerkymiteParticipant]

The flow of information is interesting. After each appointment the Consultant writes to my GP informing him what is happening and the latest blood readings etc… I get a copy of that letter.

Kindest regards

David

[adminKeymaster]

Deb keep us up to date – I went down from 14 to 5 in one cycle, 5-3 in the next, 3 – 2 and I'm around 2 still. SCT in late May, though I'm not in hurry though with the PP levels so low.

[adminKeymaster]

David, here in France I centrallise all the information and take it from the labs to the consultant, so its easier for us to keep an eye on, whihc would be great if I wanted to; in fact what I would like is for the medical staff to have the time to monitor it for me and take the decisions – such days are undoubtably over and mmodern patients have to be much more active in their healthcare.

[MinParticipant]

Hi Nigel,
When Peter was on velcade, his bloods were done in house so to speakThe machine and equipment were in the day ward. (State of the art new hospital) and depending on the results depended on what dose if any he got on any given day. He had days when he got half a dose and other days when his platelets were too low for any velcade at all.
The final decision was down to a registrar in the day unit, and she used to ring the consultant just to check for sure.
Whilst we grasped some of the figures it was impossible as a layman to understand the significance of them.

[Author]

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