Myeloma

Myeloma is a cancer of plasma cells in the bone marrow. If you're suffering from myeloma, or know someone who is, join this support group.

Paraprotein

Pb42
Posted by

Hi, diagnosed last Dec with pp 39, Xmas Eve showed pp 41, jan 28 it was pp 34 and May pp, 24.  Is it normal for pp to drop without treatment? - was going through chemo for breast cancer Jan-May.

greg777
Posted by

Hi Pb,

Really good to hear from you again and I hope you are doing ok?

I’m not sure there are many people here with two cancers, but hopefully someone will be along soon with some experience. What chemo did you have for BC? Sometimes, one of the drugs in the myeloma treatment regime is a generic one (ie, it can work in fighting several cancers). So it may be a drug you had for BC has also helped the myeloma too. This news is really positive as hopefully it will mean you will be really responsive when you get a Myeloma-specific drug. What is the plan of action for you now?

Greg

Pb42
Posted by

thanks Greg, it was FEC t chemo. 

greg777
Posted by

Hi Pb,

What is the C, is it cyclophosphamide? If so, that drug is commonly prescribed in myeloma regimens, so it’s entirely possible this has been working its magic on the myeloma as well as the BC. This is really good news as if you are now going to add in a Myeloma specific drug (eg, velcade, revlamid, etc), it should be a good sign your body is going to knock the myeloma into remission. Is that the plan now, to add in some myeloma drugs, or are you having a break from treatment?

Greg

Pb42
Posted by

Hi, I have just checked and yes the C does stand fir cyclophisphamide.  I think I'm a bit gutted to be honest!  I changed my diet, I'm taking supplement as using 'off label' drugs, doxycycline mebendezol, atorvastatin and metformin. I have had no treatment for myeloma so far as dealing with chemo and radiotherapy.  Be interesting to see what my pp is at next appointment in September. Part of me doesn't want to start treatment as feel I will be on a slippery slope! Also, I'm not keen to put my body through a second lot of chemo.  

Pb42
Posted by

I had only had one cycle of chemo when my pp dropped from 41 to 34.  Would the cyclophisphamide have worked that quickly? 

greg777
Posted by

Hi Pb,

Really sorry, it didn’t cross my mind that you were hoping the pp had gone down naturally. Please don’t take anything I say as the medical truth, I am very far from being a medical expert. What little I have learned over 4 years on this path is that there is still a lot to learn! Also, I have the light chain version of myeloma so my pp has never been particularly high. I do know that the drugs can have a good effect in a short space of time but that is by no means a guarantee of what has happened to you. Also, I do know pp can fluctuate naturally so the medical teams are much more interested in the overall trend rather than one isolated result. 

It’s probably best to wait and see what the medical teams say in September. I can understand you wanting to be drug-free. It may be they will keep you on a watch and wait for the time being. If you do have to start treatment, please be assured that the treatment for myeloma can often be well tolerated and depending on the strategy, once you have been on treatment and knocked the myeloma cells down, you may go treatment free again - eg, I haven’t taken anything for myeloma for almost 4 years now.

Greg

Pb42
Posted by

Thank you Greg for reply. Im glad to hear you haven't had to have treatment for quite some time. I will update you after September appointment. 

Pb42
Posted by

HI Greg, well think you may have been right about my breast cancer treatment helping to lower my pp.  My last blood taken last month I have just found out my pp has went back up to 41 after dropping from 24.  My consultant wants to do them again but said all other blood is fine.  I feel great too.  If all other blood fine does a increased pp something I should be worried about?

greg777
Posted by

Hi Pb,

Good to hear from you again although not in the context of what you write in your post. I have the light chain version of myeloma so I am not that up to speed on paraproteins unfortunately. I may be wrong but I think they normally want to do something if it is above 20. But you can get odd one-off results which may be why they want to do it again. Myeloma can be an odd cancer in that it can be asymptomatic - ie, it is active but you don’t have any symptoms. I suppose it all depends on what their advice is and what you want to do as the patient. It may be they will do watch and wait and see what happens. Or they may suggest some preventive treatment while you’re feeling well. 

I’m really hoping you don’t need to go back on treatment Pb, and please take everything I write with a pinch of salt as I’m not a medical expert and my pp has never been particularly high.

Hopefully someone with more experience of pp’s will come along soon to give you some more insight.

Greg

Pb42
Posted by

Thank Greg for taking time to reply.  I still do not fully understand myeloma and will arrange to get another blood test done.

Pb42
Posted by

Well, my lower pp was short-lived! 2/9 showed an increase to 43 so consultant asked for another test which was done this week and showed 63 but also it said' significant burden of disease and ' serum immuntyping indicates igg kappa pp with immunoparensis. From what I've googled not great. I feel absolutely fine health wise. Apart from gloomy reading I haven't found out much else. Anyone she'd more light on this? 

janef123
Posted by

I have myeloma measured by paraproteins, (IgG lambda). I had few symptoms at diagnosis (anaemia and some kidney damage) and my pps rose gradually up to 43 (then fell, presumably due to curcumin I take) until my bone marrow biopsy indicated over 60% marrow infiltration at which point I became very stressed and my consultant decided treatment should start. 

I too have had a second cancer at the same time- a papillary thyroid cancer, fortunately caught early. I suspect a specific gene mutation has caused both.

14 months after starting treatment, and having had a stem cell transplant and thyroid surgery since, I feel great, I wish I'd believed I could feel so normal again.  Don't lose hope, give credence to all your hunches about your health, and plan things for after treatment as something to look forward to. 

Wishing you well Pb42

Jane