[doylerozParticipant]

hi there,

I have a complicated history. I had a kidney transplant in 1995. It has been fine until the last few years and my creatinine has been starting to creep up. I have been complaining of bone pain for a good few years with some fractures. I have lost feeling in some of my toes. I have been told I have neuropathy. I get dreadful IBS and struggle with my breathing when trying to walk up hills or stairs. I am continually tired and find myself confused and get very dizzy. Lots of different things. I went to a rheumatologist a few weeks ago and got a call yesterday to see a haemotologist this morning as my monoclonal level was elevated. Turns out it was 6. He said I was also anemic. He thinks the kidney probs can probably be put down to my old probs and transplant. But I am scheduled to have a a bone marrow biopsy on Tuesday. He is hopeful I don’t have myeloma.

I am a bit worried and wondering where my levels fall on the scale and would love some info and advice.

 

thank you

 

DoylerOz

[paulapurpleParticipant]

I’m afraid I can’t really help you. Ring the Myeloma UK info line or post on the UK Myeloma Support Group Facebook page and I’m sure you will get a much better response.

[finnParticipant]

Hi

Sorry to hear about your troubles. PP level 6 is quite low and it could be just MGUS, a precursor of myeloma which does not require treatment and may not even lead to a full blown disease. However, anemia is a common problem in myeloma. Do you know your hemoglobin level? Anemia could explain lots of your symptoms, such as getting tired when walking up the hills, being tired generally, and feeling dizzy. Good that they are doing a bone marrow biopsy, then you will know for sure how things are. Hopefully it is just MGUS and nothing more serious.

[sabsParticipant]

Hi,

From what I have learned over the passing months,  finns comment is right a pp level of 6 is low and usually no treatment (chemo) is given or suggested until its above 10 or 15. I met an elderly lady who had levels of 6 for around 8 years before it went up to 17 and then she started having a few troubles but for those 8 years nothing was done she was just monitored.  Until you have your biopsy I guess it could swing both ways MGUS / MM I do hope for what its worth that you get good news from your test results, the waiting and not knowing is the worst part of it all but sadly its something that everyone has to go through, but there is a lot of help and support out there, I am not a sufferer of MM but my other half is and I look over the forum nearly every day just to read up on things or ask questions as and when something happens that i am worried or unsure about. Its also good to hear of people progressing and give you a lot of hope. Just remember times are changing but for such a rare cancer a lot of progress is being made.

[graham-cParticipant]

I have been MGUS since January 2012 and the paraproteins have varied between 3.00 and 10.30 in that time. One similarity we share is that I have had kidney problems relating to kidney cancer in 2007 and I now have just the one kidney. One good thing is that the blood tests for MGUS include eGFR which is effectively a reflection of kidney efficiency though, like paraproteins, unless the figure is dramatic then it’s a matter of keeping a watchful eye on trends. My eGFR has varied between 54 and 73 in that time.

I have two blood tests a year for MGUS and I get the results by phone and this procedure is an indication that I am at low risk and thus a low priority and I am happy with that. I consider it the best of all worlds – low risk, I avoid treatment but I am still monitored.

One thing you could also ask about is free light chain levels as they can be a separate risk to anyone with kidney weakness. My figures have varied between 109 and 195.

At 64 I have plenty of aches and pains in joints and bones and I know that I have done serious damage to my lower back through sporting endeavours in younger days, but I think I can determine what is caused by the ravages of time and what isn’t.

[doylerozParticipant]

Hi Graham

Thank you so much. I am getting a little anxious now. My biopsy is in the morning. I have been living with chronic illnesses since I was 22. And I think I do pretty good. But you never want to hear the big C. But like anything you will deal with what happens and figure it out 🙂. So fingers crossed! Just another journey to negotiate.

xx

[paulapurpleParticipant]

Your biopsy will tell you for sure where you are at. Fingers crossed it isn’t. xx

[graham-cParticipant]

One quick point DoylerOz.

Have you considered a DEXA scan ? That measures bone density and seems appropriate considering you have mentioned fractures. Just because your symptoms haven’t led to a diagnosis it doesn’t mean that you are imagining them. Age, sex and other details determine if it’s appropriate for you but no reason you can’t discuss it with your GP.

[doylerozParticipant]

Hi

Had my bone marrow biopsy this morning. Also had a bone marrow aspiration and bloods. Came home and slept on and off for most of the day which was probably no harm! Back to see the haematologist next Wednesday so fingers crossed. I did have a dexa scan Graham which my GP said was ok. I thought this was odd as my last one in 2012 in Australia showed ostapenia. But they did scan different areas.

 

xxx

 

[graham-cParticipant]

In simple terms you could say that osteopenia is to osteoporosis what MGUS is to myeloma.

My mother has osteoporosis which is how I know about the DEXA scan. Perhaps your GP could recommend some simple dietary changes, but always keeping in mind your kidney situation. I take a vitamin D supplement but, in the UK that’s fairly standard and most people have a deficiency of Vitamin D.

Free Light Chains are something to keep an eye on and they will be measured as part of any myeloma blood test. It’s always a case of looking for significant results or unusual or continuing changes.

I’m with Leicester Royal Infirmary and I feel confident in them even though I receive minimal attention. Reassuringly that’s what my figures indicate is appropriate for me, and long may that remain the case.

Last year I had what they term a ‘spike’ and the hospital reacted very quickly but it simply turned out to be an isolated result, but it showed me that they are there watching over my results.

Best of Luck with the BMB.

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